Between Reason and Illusion: Demystifying Schizophrenia (Copernicus Books) 9783031245558, 3031245555

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Illusion

Reason

BE T W E E N

AND Demystifying Schizophrenia JORGE CÂ NDIDO DE ASSIS CECÍLIA CRUZ V ILL AR E S RODR IGO AFFONSECA BR E SSA N

Copernicus Books Sparking Curiosity and Explaining the World

Drawing inspiration from their Renaissance namesake, Copernicus books revolve around scientific curiosity and discovery. Authored by experts from around the world, our books strive to break down barriers and make scientific knowledge more accessible to the public, tackling modern concepts and technologies in a nontechnical and engaging way. Copernicus books are always written with the lay reader in mind, offering introductory forays into different fields to show how the world of science is transforming our daily lives. From astronomy to medicine, business to biology, you will find herein an enriching collection of literature that answers your questions and inspires you to ask even more.

Jorge Cândido de Assis • Cecília Cruz Villares Rodrigo Affonseca Bressan

Between Reason and Illusion Demystifying Schizophrenia

Jorge Cândido de Assis São Paulo, São Paulo, Brazil Rodrigo Affonseca Bressan Department of Psychiatry Federal University of São Paulo São Paulo, São Paulo, Brazil

Cecília Cruz Villares Department of Psychiatry Federal University of São Paulo São Paulo, São Paulo, Brazil

English translation of the 3rd original Portuguese edition published by Grua Livros, São Paulo, 2023 The translation was done with the help of artificial intelligence (machine translation by the service DeepL.com). A subsequent human revision was done primarily in terms of content. Copyright of the 3rd original Portuguese edition: Grua Livros 2023 ISSN 2731-8982     ISSN 2731-8990 (electronic) Copernicus Books ISBN 978-3-031-24555-8    ISBN 978-3-031-24556-5 (eBook) https://doi.org/10.1007/978-3-031-24556-5 © The Editor(s) (if applicable) and The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 This work is subject to copyright. All rights are solely and exclusively licensed by the Publisher, whether the whole or part of the material is concerned, specifically the rights of reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors, and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, expressed or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. This Springer imprint is published by the registered company Springer Nature Switzerland AG The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland

Foreword

Reason and illusion are part of our lives. However, some people have disorders of reason and illusion in the form of delusions and hallucinations. When these phenomena take over a person’s life, they are called psychosis. Psychoses, particularly schizophrenia, are still poorly understood and subject to a great deal of prejudice. Jorge, Cecília, and Rodrigo had the courage to tackle a difficult theme and write an educational book about schizophrenia. The book’s originality lies in the fact that it was written taking into account the experience of the person with the disease and his or her family members in the face of this new reality in their lives. The authors’ claim for realistic hope in schizophrenia affirms the importance of hope, renewed in everyday achievements, in increasing adherence to treatment and dialogue with health professionals. Altogether it paves the way to deep understandings that lead to integration between inner experience and family and social relationships. My wish is that, with this book, people with schizophrenia and their families can learn about schizophrenia, live with the difficulties, and seek treatment to lessen the stigma of the disease. Professor Emeritus, Escola Paulista de Medicina Federal University of São Paulo (UNIFESP), São Paulo, Brazil

Itiro Shirakawa

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Preface to the First Edition

The human condition is not linear and rational as we would like to believe but is given in the coexistence between logical-rational aspects and the subjective and timeless dimension of the mental world. The balance between these aspects and dimensions allows us to maintain a certain “mental sanity” that enables us to exercise our social roles with creativity. We fear madness because it is very close to us—we all go through emotional or physical situations that put us in contact with the limits of sanity. However, when certain dimensions of the mental world, such as thoughts and perceptions, gain preponderance and subjugate rationality, limiting even subjectivity, we enter the field of madness called psychosis. In this book, we address the experience of schizophrenia, a form of psychosis in which subjective aspects, such as hallucinatory and delusional phenomena, tend to distort the understanding of reality. What are these phenomena? To what extent are they restricted to people who experience psychosis? The experience of schizophrenia is extremely complex and difficult to understand both for those who experience it and for those who accompany it from outside. It is also frightening as it means impairment or loss of the capacity for self-management and free will. As psychotic states oscillate in intensity over time, those affected live in states of sanity and insanity. They literally live between reason and delusion. The experience of going mad as a result of the acute effect of psychotropic drugs has been widely explored in various texts and books. This book goes further by presenting aspects of a singular human condition, schizophrenia, through narratives of the journeys of characters who live with the disease. It also seeks to show how “another understanding of things” and living with vii

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Preface to the First Edition

madness can lead to great learning, both from a personal point of view and in terms of understanding the people around us. The process of madness that occurs in schizophrenia is a constant challenge to overcome and to search for the best way to promote acceptance among different points of view. In addition, acceptance does not necessarily imply agreeing but rather understanding that the other’s different view makes sense to them, and, based on this, building a common territory of understanding. Between Reason and Illusion is an invitation for you to construct an understanding of what the process of going mad, becoming psychotic and living with this condition throughout life, is like. Thus, the themes are presented from four main points of view: (a) those who experience the process; (b) those who live with people who experience the process (family and community); (c) those who treat people going through this process (mental health professionals); (d) those who study schizophrenia (researchers and neuroscientists). The book uses simple language and many illustrations on subjects related to schizophrenia. It describes aspects of the lives of people with schizophrenia and their families, from early symptoms, the path to diagnosis, an understanding of what the illness is, seeking help, relationships with health care professionals, and treatment strategies. It offers ideas on how to deal with situations and feelings that concern what is deepest in each of us to maintain a possible and healthy balance. The book deals realistically with the paths to recovery with the aim of offering understanding and hope.

Preface to the Second Edition

In this second edition, we modified the title of the book from Between Reason and Illusion: Demystifying Madness to Between Reason and Illusion: Demystifying Schizophrenia. We followed the choice of the Portuguese edition as Madness seems to have such an intense stigma that makes it difficult to read the book. In this edition, we have added a new chapter that meets requests from readers. This new chapter, Chap. 3, seeks to demystify schizophrenia from the understanding of its neurobiology. We present in a didactic way the main scientific aspects because understanding them greatly helps people with schizophrenia and their families to better comprehend the disease and to better use the available therapeutic resources. We have also included a glossary with a number of terms used by health professionals and updated the appendix with links to websites, services, projects, and associations. We hope that you, the reader, will find in this second edition useful information and a view of schizophrenia as an experience that can be understood and which there are ways to overcome.

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Preface

This third revised edition will have separate publications in Portuguese and in English. This book is the result of the collaboration between three friends who brought together their expertise and experiences around the theme of schizophrenia in order to produce a text that is both informative and hopeful: Jorge Cândido de Assis, who knows the way in and out of delusion and has used the medical, psychotherapeutic, and peer group resources to give him the motivation that has allowed him to actively participate in academic projects as a professor, lecturer, and speaker; Rodrigo Affonseca Bressan, a distinguished psychiatrist and neuroscientist, who is recognized for his contributions to the knowledge of schizophrenia; and Cecília Cruz Villares, occupational and family therapist, who has been developing projects with people with schizophrenia and their families to combat the stigma of the disease and generate activities that help them to come out of isolation, recognize and develop their skills, and follow paths toward overcoming it. The process of writing the book took 18 months, between 2007 and 2008, based on the challenge of producing a text to show the complexity of the experience of schizophrenia, to convey scientific concepts in accessible language, and to present perspectives of overcoming the disease to those who suffer from by it. We had in common the professional background and a long period of practice and experience, and we knew that the stigma that marks schizophrenia causes suffering many times greater than the disease itself, hindering the search for help and long-term treatment. But beyond our mutual interests, we worked hard to welcome and integrate our differences. These guided us in a constant exercise in dialogue between different points of view, knowledge, and experiences, in which we xi

xii Preface

sought to build multivocality within a narrative guided by the concept of shared understanding that is necessary in order to cultivate hope in schizophrenia, a realistic hope that is renewed through daily achievements. This organizing principle has made its writing process a unique experience of mutual trust and respect, uniting collaboration and creativity, and has resulted in a text that invites readers, whether they are people who live with schizophrenia, family members, lay people, or professionals, to enrich and broaden their understanding, to dialogue, and to work together to face the difficulties and sufferings brought about by schizophrenia. In this sense, the collaboration of 19 people—health professionals, people living with schizophrenia, and family members—who wrote texts based on their experiences, was also fundamental. These accounts sustain and reinforce the polyphony and integrate the visions and experiences of each of them in the coexistence with people living with schizophrenia and their families. This new edition has enabled us to revise and expand the glossary with terms used by health professionals and to update the appendix with links to websites, services, projects, and associations. This revised third edition is also published in English. In this third edition, we would like to give special thanks for the collaboration of Professors Ary Gadelha de Alencar Araripe Neto, Cristiano de Souza Noto, and Bruno Bertolucci Ortiz from the Department of Psychiatry at the Federal University of São Paulo. We would like to thank Professor John Milton of the Faculdade de Filosofia, Letras e Ciências Humanas of the Universidade de São Paulo for his collaboration in the revision of the text in English. And we are grateful for the contribution of a person living with schizophrenia and a family member whose texts are based on their experiences. It is therefore with great satisfaction that we present this third edition. If we are here, it is because the book has fulfilled its aim of presenting a difficult and complex theme while balancing scientific rigor, ordinary language, and a message of hope. Our brave Gabriel, the central character of the narrative, and his family members, friends, and colleagues, the professionals who accompany him on his journey to understanding, acceptance, treatment, and recovery, were inspired by the stories of hundreds of people we met along our path of study, work, and living with schizophrenia. We reiterate here our deepest gratitude to each and every one of you for what you have learned over the years. The experience with this third edition reaffirms to us, the authors, after 14 years, that friendship and dialogue are fundamental, and that it is possible to have hope in schizophrenia, a realistic hope. São Paulo, Brazil  

Jorge Cândido de Assis Cecília Cruz Villares Rodrigo Affonseca Bressan

Introduction

Abstract  This book presents our approach to address schizophrenia through characters based on real stories, considering different views: the affected person, health professionals, and family members, as well as society. It presents the main issues that this perspective can present and shows the approach to the topics treated in each chapter. Keywords  Schizophrenia · Treatment; Rehabilitation · Recover  We understand that there are four distinct views of the context in which people with schizophrenia are situated, those of the person with schizophrenia, their family members, health professionals, and the community in which they live. It is important to stress that each is correct based on its own point of view. Much of the misunderstanding about schizophrenia is due to the difficulty in bringing together the experiences and explanations of these four views. In this book, we will present each of these perspectives, with the purpose of promoting approximation and dialogue between them. We propose that in the first two chapters, our readers follow the trajectory of a character that we shall call Gabriel. This trajectory will illustrate the experience of schizophrenia in the various visions. In the following chapters, other characters will appear. Gabriel and these other characters have been created based on the experiences of several people with schizophrenia we have known for years and on what they have in common. We will try to show throughout the book that: • The person who becomes ill when going through an acute crisis believes the thoughts and perceptions they have. More than believing, they feel that they are actually happening. This is not an ordinary experience but rather xiii

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one in which the person lives very difficult moments of confusion, perplexity, and disorientation. • When a person has schizophrenia, the whole family is affected. Family members invariably want the best for the person but find themselves in very difficult situations and ask themselves: What can we do? What is the best course of action? How can we live with the person with schizophrenia? There are no ready answers to these questions, but we hope to point out possible ways to deal with the issues experienced by family members. • Professionals (psychiatrists, psychologists, occupational therapists, social workers, and nurses) seek to help the person with schizophrenia, and their family members learn to cope with the illness and restore their health. Each professional in their field has a different point of view. Together, they seek to support each other so that the results are as good as possible. In this book, the community is made up of people with whom the family and the person with schizophrenia have a close everyday relationship. In large cities, it may be defined by the neighborhood, and in small towns, by its inhabitants. Each community has its own way of functioning and directly influences how the person with schizophrenia and their family members relate to each other and how they are welcomed. The community has its own views, which also play an important role in influencing the family attitude toward the illness. The experience of schizophrenia by the person and family members leads to the need for much understanding and search for support from health professionals. It promotes great changes that require new learning in family relationships so that the person with schizophrenia has the welcome needed to redesign their life path. It is also necessary to learn to live in the community because experience shows that an attitude of acceptance of the disease and of not being ashamed or isolated is a great help for people in the community to understand that schizophrenia is a human experience like so many others. This helps to reduce discrimination and to establish social relationships that improve life. It is possible to approach schizophrenia and treatment practices from a scientific point of view as schizophrenia is the most studied illness in psychiatry. It is also possible to talk about schizophrenia from the point of view of personal experience as there are many books and autobiographical texts on internet sites today. Our goal is to fill the gap that exists between these two ways of approaching the disease. Thus, we have taken care both to inform ourselves of scientific method and to speak from the experience of

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schizophrenia, and to begin with, we present the main questions that have guided us in the construction of this book. How does schizophrenia appear? What are the difficulties for the person to perceive that what they are experiencing is a disease? Does this awareness lead to acceptance, or does it instead reinforce denial? How does the family cope with the situation of one of its members having schizophrenia? Does this coping change over time? Can the family help the person with schizophrenia? What can be done? How to act? What can and should be avoided in a relationship with someone with schizophrenia? What can I expect from treatment? Why is there no laboratory test to determine the presence of the illness? If there is no such test, how does the doctor know that the person has schizophrenia? How do they prescribe medications? Why are medications important? Are there other treatments for schizophrenia besides medical treatment? How do these treatments “work”? Do they replace the need for medication? Can families benefit in any way from treatment? When is hospitalization necessary? What does hospitalization look like? Who are the professionals involved in caring for the person with schizophrenia? How should the family deal with the possibility of hospitalization? Is schizophrenia a disease of the brain or the mind? Can it be both? Can the brain get sick? What happens in the brain of the person with schizophrenia? What about the mind, can it get sick? What goes on in the mind of the person with schizophrenia? Does schizophrenia change over time? How does recovery in schizophrenia happen? For how long are treatments needed? Why is it possible to have hope? These are some of the issues addressed in this book. Through practice we realized that understanding issues that directly affect the way we live and see life is the most difficult type of understanding because it only occurs when we manage to promote changes in our way of being, making room for the new. This process begins with the recognition of our experiences in what the book transmits as it was not written to say what is right or wrong. This is the first step. The next step in the process is to think about one’s own life and the possibilities it offers and then to move toward change. In this journey, which is necessarily individual, each person has to find their own path. Between Reason and Illusion is organized into seven chapters, with each addressing a topic we consider important to understand and be able to live with schizophrenia. They can be read independently, but we believe that reading them from beginning to end will provide a more complete view of the approach given to the theme. The following is a brief presentation of the contents of each chapter.

xvi Introduction

In the first chapter, we present what schizophrenia is, how it appears, and how it evolves, leading to the need for psychiatric and mental health care. In this chapter, it is possible to understand, through the experiences of the created characters—Gabriel and his family—what are the main symptoms of schizophrenia when the person suffering from the disease has a crisis. We do not provide a rigorous scientific description as this would make the subject incomprehensible for those who are not specialists. Even so, the description follows a scientific framework but is presented through the experiences and context in which the person with schizophrenia is involved. Our aim is to show that schizophrenia is a disease and that it can be understood despite the misunderstandings it brings. In the second chapter, we present the difficulties of understanding and accepting the illness and its treatment. It is by overcoming these difficulties that it is possible to sustain the initial phase of treatment until a secure diagnosis of schizophrenia is established (differential diagnosis). We present some of the factors that lead to a delay in starting treatment and examples of ways that people can overcome these factors. To diagnose schizophrenia, a considerable treatment time is needed to eliminate the possibility that the person has other types of illness. We show that with the correct treatment and medication, a person can come out of acute crisis if they and their family are given the guidance to deal with the care that schizophrenia requires in order to control its symptoms. The third chapter presents what the disease is from a scientific point of view and objective data that allow the demystification of several aspects related to schizophrenia, including its prevalence and the burden to individuals, families, and society; the brain mechanisms associated with the symptoms such as hallucinations, delirium, and cognition alterations; the action mechanisms of the medications; the environmental and genetic causes of the disease; the brain repercussions of the evolution of the disease, neuroprogression; and the possible ways to attenuate this evolution through neuroplasticity. The fourth chapter shows how it is possible to redesign one’s life path while maintaining the necessary care for schizophrenia. It also presents a very common mistake in all diseases that, like schizophrenia, require indefinite treatment: to think that one is cured and abandon the treatment. Our character will have a relapse, and, due to the conditions in which this happens, will need to be hospitalized. We show how hospitalization follows the current treatment procedures. We will present two other characters who are in situations different from Gabriel’s but which are very common in schizophrenia: the person who does not accept the treatment, represented by the story of Francisca, and the person who does not respond well to medication,

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represented by the story of Carlos. We follow the story of Gabriel when he leaves the hospital and show how he resumes life, the rehabilitation process, and the losses that will be, in part, overcome with time. In this chapter, we will also provide important information about the medications, their effects, and what they are, including the commonly used doses. The fifth chapter addresses a subject that has a great influence on the lives of people with schizophrenia and their families: stigma. The way we have chosen to address this issue is to show how people feel in different situations. We will also present ways to deal with the labeling and discrimination that stigma brings. Our character Gabriel seeks drugs as a way to be accepted, which will require action on the part of the family and health professionals. We show that there are ways to deal with stigmatizing situations and that it is necessary to avoid being a victim of society’s lack of comprehension of mental disorders, especially schizophrenia. The sixth chapter has as its theme family life, the relationship of family members to each other, emphasizing that the person with schizophrenia is part of these relationships. This subject is very extensive, and so we have chosen a number of important themes that may help the person with schizophrenia and their family to think about ways to build good ways of living together. Through the characters, we shall address issues that involve coexistence from real situations that we know and ways to solve problems. We will show the importance of the family trying to solve problems, as well as the value of using the resources of the community to establish a network of rewarding relationships and to seek to ensure that the disease does not occupy a central place in relationships so that all can live with quality and care only for the issues of schizophrenia in relation to the demands it brings. This is what we understand as paths of overcoming. The seventh chapter, which closes the book, presents recovery and new perspectives. We bring information that allows an understanding of the disease based on science as we believe that this information helps to undo misconceptions about the disease and about psychiatry. We have left them for the last chapter because we consider it necessary to understand the process of becoming ill and seeking treatment in an experiential way so that this information can be better used. Experience shows that recovery in schizophrenia must be understood as the result of a process over time, maintaining the necessary care for the disease to be controlled, in which the person and his family learn to deal with situations and to redesign paths that allow for a life with quality. This is illustrated by the recovery story of each of the characters, based on real stories we know. We shall address the importance of participating in associations and support groups to come out of isolation and exchange

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experiences in common, as well as organizing the defense of rights. Finally, we will discuss the most recent research on the early detection of schizophrenia, which will enable the prevention of the disease in the near future. We hope that reading this book will present useful information and bring new ideas for caring for schizophrenia and living a good quality life. This was the central motivation in our work: to contribute to a better life for people with schizophrenia and their families and to present this illness as a human condition that can be understood and with which it is possible to live well.

Acknowledgments

This book is the result of what we have learned from people with schizophrenia and their families through years of contact in various activities, in the clinic, and in life. With their stories and battles, suffering, and overcoming problems, these people have taught us and instigated us to write, trying to transmit these experiences in a language very close to the conversations we have had during these years. To all family members and patients of the Schizophrenia Program (PROESQ), Federal University of São Paulo (UNIFESP), and the Brazilian Association of Family Members, Friends and Bearers of Schizophrenia (ABRE) and to ABRE’s associates and helpers, our thanks for the opportunity to meet, share, and learn through this rich dialogue. To Simone Rocha and Christian Schneider, for believing in our proposal from the beginning and for the incentive and support to the project throughout almost 2 years of working together. To Dr. Itiro Shirakawa and Nilton Vargas, for sharing with us the dream of building a better world for people living with schizophrenia and their families. To our colleagues and friends: Ary Gadelha, Cecília Attux, Cristiano Noto, Elaine Vieira, Fernanda A. Pimentel, Fernando S. Lacaz, Fernando Paz, José Alberto Orsi, Larissa C. Martini, Lucas Moya Ventura, Luiz Cláudio Freire, Maria Eduarda Caruso, Marlene Apolinário, Miguel R.  Jorge, Marcelo Q.  Hoexter (Dr. Marcelo), Romilda Viana Lima, Stella M.  Malta, Vânia Bressan, Wagner Barbosa de Souza, and Wulf Dittmar for the contributions, trust, and partnership in the study.

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Contents

1 The  Experience of Falling Ill  1 What Is Schizophrenia?   1 Different Points of View   2 Everything Has a Beginning    4 A Path That Begins to Change    6 The Other Path   7 Perceiving the World Differently   9 Positive Symptoms  10 Another Understanding of Things   11 Reality Can Be Very Confusing   12 Faded Colors  14 Lost Energy  16 Negative Symptoms  17 Cognition and Schizophrenia   18 Neuropsychology  18 Paths and Possibilities   19 The First Step   20 2 The  Path to Diagnosis 23 How to Understand the Unknown?   23 Disease or Spiritual Evil?   25 Coming to the Aid   26 But What Is the Disease?   28 One Way  29 Coexistence Is Not Always Easy   30 xxi

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The Start of Improvement   31 Occupational Therapy and Rehabilitation   33 Is He Crazy?   33 The Path to Diagnosis   35 The Importance of the Doctor-Patient Relationship   36 Is It Curable?   37 A Necessary Learning   39 3 W  hat Is This Disease? 41 Scientific Understanding Decreases the Stigma of the Disease   41 Epidemiology and the Impact on Society   42 Which Body Organ Is Affected by Schizophrenia?   44 Genetics and Schizophrenia   45 Ary Gadelha de Alencar Araripe Neto   45 Changes in the Operation of the Brain: Dopamine   46 Treatment of the Alteration in the Brain: Antipsychotics   48 Neuroprogression  49 A Realistic Hope: Neuroplasticity   50 4 T  reatment 53 General Aspects  53 Another Path: The Return   54 A Very Common Error   55 The Importance of Medication   57 Prevention of Relapses   58 Another Form of Care   60 Demystifying Hospitalization  61 Experience of Hospitalization   63 Humanized Care: The Role of Nursing   63 When the Person Does Not Think They Are Sick   64 When Medicines Do Not Work   66 After the Acute Crisis   67 The Importance of Healthcare   69 What the Experts Say   69 Lecture  70 Long-Term Monitoring  74 Medicines: New Perspectives   74 Psychotherapy  75

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Rehabilitation  76 Recovery  77 Road to Recovery   79 5 Stigma:  How People Feel 81 Labels  81 Testimonial  82 Concept  82 Lack of Awareness: Where It All Begins   83 Acceptance of Limitations   84 Madness: A Word That Can Hurt   86 Awareness Is Difficult   87 Discrimination and Concealment   89 Difficult Social Relations   90 Experiencing Stigma  91 Insulation  92 Missed Opportunities  94 Schizophrenia and Drug Use   95 Experience with the Use of Marijuana   96 Facing Stigma  97 Two Aspects of Stigma   98 6 F  amily Interaction101 Family 101 The Questions of Each Person  102 What Is the Magic Formula?  104 An Acute Schizophrenic Crisis Disorients Everyone  105 Addressing a Time of Crisis  106 When Treatment Is Refused  108 Preventing Relapses  109 Creating a Welcoming Environment  111 Family Relations  112 Finding Resources in the Community  113 Encouraging Autonomy  114 A Successful Experience  115 Ways to Overcome  117 Learning from Living Together  118

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7 Recovery  and New Perspectives121 Recovery 121 The Recovery of Carlos  121 Francisca’s Recovery  122 Gabriel’s Recovery  124 Following a Path  125 Medicines: New Perspectives  126 Early Treatment  127 Together, the Toad Gets Easier  128 Participation and Advocacy  129 The Future: Early Detection  130 Perspectives 131 Realistic Hope  132 A  ppendix135 G  lossary143 I ndex151

About the Authors

Jorge Cândido de Assis  has been living with schizophrenia for 38 years. He is an Industrial Technician in Electrotechnics, a member of the Schizophrenia Program Team (PROESQ) of the Department of Psychiatry of the Federal University of São Paulo (UNIFESP), and Guest Professor in the Medicine Course at UNIFESP. He was Vice-President of the Brazilian Association of Relatives, Friends and Patients with Schizophrenia (ABRE) (2009–2020). Cecília Cruz Villares  Cecília is a mental health practitioner and family therapist from São Paulo, Brazil. She has a background training in Occupational therapy, a master’s degree in Mental Health, and is a certified practitioner and trainer in Open Dialogue by the Institute for Dialogic Practices (NY, USA). As a Director at NOOS Institute, she coordinates Training Programs in Dialogic Practices and Open Dialogue in Brazil, Portugal and Spain, and Latin America. She worked at the Department of Psychiatry of São Paulo Federal University (UNIFESP) from 1984 to 2017, as a team member of the Schizophrenia Outpatient Team. Since 2000, she has coordinated a project that established strategies and actions ranging from research to education and advocacy aimed at reducing the stigma associated with schizophrenia in Brazil. One of the main accomplishments of this effort has been the launching of a national Schizophrenia Association (ABRE) dedicated to support and empower people with schizophrenia and their family members, and to disseminate information to the professional and lay community. Rodrigo  Affonseca  Bressan Rodrigo is a psychiatrist and neuroscientist Professor at the Federal University of São Paulo (UNIFESP) and the King’s College in London. He has leaded the Schizophrenia Program at UNIFESP xxv

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About the Authors

and a Integrative Neuroscience Lab (LiNC) and a Integrative Neuroscience Lab (LiNC) or 10 years and authored more than 400 scientific articles, some of them focused in “hope.” He is the president of Instituto Ame Sua Mente (Love Your Mind Institute), focused on the prevention of mental disorders and advocacy of mental health in schools. In 2016, Rodrigo was awarded the Legislative Merit Medal, the highest honor bestowed by the Brazilian Congress, for his educational work to destigmatize people with mental disorders and ensure their rights.

1

The Experience of Falling Ill

What Is Schizophrenia? We begin the answer to this question with the consideration that it is technically very difficult or even impossible to answer questions such as “What is it?” When we answer this kind of question, we invariably formulate a definition, leaving out various characteristics and experiences that the definition does not account for. One way around this difficulty is to try, as well as possible, to answer the question of “How does it happen?”; then we can outline a description that helps the reader. This is what we shall begin to do now and which will be developed throughout the book. Here, we make the invitation to the beginning of a conversation that leads us to a positive understanding of schizophrenia. This chapter addresses the experience of going mad. The first paragraph of the preface presents, in a few words, what we will try to present in more detail throughout this chapter. “Madness” is a term used for centuries to qualify © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 J. C. d. Assis et al., Between Reason and Illusion, Copernicus Books , https://doi.org/10.1007/978-3-031-24556-5_1

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J. C. d. Assis et al.

attitudes and behavior that do not correspond to what is expected and natural and, by not making sense or not being accepted in the community, generate suffering for those who live them and fear for those who do not understand them. In this sense, schizophrenia, as will be clear below, represents well what people understand as madness, and this justifies the title of this first chapter. Our goal is to change the view that people have of madness as something that is incomprehensible and causes fear. We will show that schizophrenia is a human experience that is possible to understand, and, more importantly, we shall show throughout the book that it is a disease, that it is treatable, and that recovery is possible. Some people may think that we are being idealistic and that we do not know the reality of people who have schizophrenia. However, it is from our knowledge of and work with people with schizophrenia that we have outlined several understandings that can in practice contribute to improvement and recovery. We have not written about theoretical knowledge, with which one seeks to intellectually solve problems; we have sought to present a way to build understanding and to promote change, both for the person with schizophrenia and for their family. It is necessary to describe and explain what we mean when we use the term “schizophrenia,” which is both a disease affecting primarily the functioning of the brain and a very unusual and difficult experience of reality. We will clarify both aspects throughout the book. First, we will present some information that provides an initial understanding of the nature of schizophrenia. Schizophrenia as a disease is the result of several interrelated factors throughout a person’s history. Among the known factors, there are problems during pregnancy and/or delivery, genetic problems, problems in the maturation of the brain throughout life, and stressors beyond what the person can bear. When this set of factors acts in a specific way and period of life of a person, they may develop schizophrenia. It is known today that one of the effects that promote the behavior alterations of the person with schizophrenia is an increase in dopamine function, one of the many chemical substances that make the transmission of information in the brain. All medications to control schizophrenia (antipsychotics) act by regulating the dopamine function. Schizophrenia is, therefore, a complex disease, but it can be controlled so that the person with it and their family members can build a quality life. The most recommended treatment of schizophrenia requires a team with various professionals: psychiatrist, nurse, psychologist, occupational therapist, and social worker. More information on the multifactorial causes of schizophrenia will be presented throughout the book and especially in Chap. 3. Schizophrenia approached as a different experience of reality will be clarified during this chapter through the experiences of our character Gabriel and

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his family. Now the invitation to the next item of this chapter is the dialogue between the different views people have about schizophrenia.

Different Points of View The view that each person has about a subject or a type of experience is related to their past lives. There is no single truth that provides us with guarantees about what reality is like. Even in mathematics, the most exact of sciences, there are different views about its principles. As we said at the beginning of the Introduction, in the context in which people with schizophrenia live, we understand that there are four different viewpoints: the viewpoint of the person with schizophrenia, that of their family members, that of professionals, and that of the community in which they live. It is important to stress that each one of them is correct based on their own perspective. We will now try here to show a little of each of these viewpoints. Our aim is to present some considerations that facilitate the dialogue between these views. Legitimate dialogue is only viable when it has its origin in the acceptance of the other person’s point of view even if it is different from yours, promoting a shared understanding. On one occasion a person with schizophrenia came to us asking for a booklet we had published on the subject to leave with her father so that he would understand that she had a disease and that she was not lazy as he had said. We do not know the result of this initiative, but we are sure of one thing: if this person did not talk openly with their father, it would be difficult for him to change his view. The person with schizophrenia experiences different phases of the illness. One of them is the acute crisis, which can last from weeks to a few months; in this case, the dialogue will require from other people an acceptance focused on promoting care; at this time, the person is going through a very difficult and disorientating situation. Dialogue, in these conditions, can serve more to establish bonds of trust than to convince in any way. Another stage is the stabilization phase, which can last for years if the person with schizophrenia follows treatment. In this case, dialogue based on acceptance may serve to establish a bridge between the issues the person experiences and the views of others with whom they live, decreasing isolation and promoting a more satisfactory type of relationship, which may improve over time. Family members are often at a loss as to how to act when a family member falls ill with schizophrenia. It is a new experience and brings many difficulties, and family members can be found between two extremes: conformity, which leads to not looking for ways to improve relationships, and nonacceptance,

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which leads to wanting things to be solved overnight, either by changing medication, relying on only one type of health professional, or not accepting the illness. It is necessary to find a middle path: to understand the presence of the disease without conforming—“that is just the way it is” and to always try to find the best solution for each situation. One of the characteristics of schizophrenia is that it is a chronic illness—that is, it requires care over time. The results are frequently slower than we would like, but improvements are only possible with the constant and daily search for problem-solving and dialogue. Health professionals are trained to promote care and help the person with schizophrenia and their families cope with the problems arising from the illness. Each type of professional has more training for one type of action. It is always very beneficial to the patient when they dialogue among themselves, seeking the best solutions. In practice, this dialogue is not always ideal for several reasons, but, to a certain extent, it always contributes to more integrated care. Another important aspect is the dialogue of health professionals with the patient and their family, which, by promoting the formation of bonds—a type of relationship of trust and attention—allows the issues brought to the treatment to be dealt with in the best possible way. Each community has its own way of functioning. When people have access to the correct information about mental disorders, it is possible to establish relationships of solidarity, decreasing the isolation of patients by reducing prejudice and undoing the fear that that ignorance brings. To inform and educate are the missions of the Brazilian Association of Families, Friends and Bearers of Schizophrenia (ABRE). We will approach this subject in more detail in Chaps. 4 and 5. Let us see, next, the story of Gabriel, which illustrates well everything we have said thus far.

Everything Has a Beginning The person with schizophrenia experiences reality in a different way, and such experience invariably causes many conflicts in relationships. We will try to describe how this process begins, following how it happened in Gabriel’s life. This beginning takes place well before the appearance of symptoms. Gabriel finished his school studies and started working. Until then, his life had followed a natural course. He was going through the transition between the school and work environment, now with more responsibilities and a more

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rigid routine, and it was through these changes that he began to feel certain difficulties that he had not noticed before. He begins to have difficulty relating to people at work. At home, his behavior begins to change; he talks less with his brother and sister and parents. Gabriel starts to isolate himself and feels lonely. He increases his distance from people, avoids going out with friends, and does not talk much when relatives come to his house. His decline in performance and his gradual isolation mark the beginning of the onset of schizophrenia. This is not to say that every young person going through a difficult time will have the illness, but most people who develop it report experiences similar to Gabriel’s before the onset of symptoms. This situation starts to become increasingly problematic and stressful. Then, Gabriel decides to stop working and stay at home to study for the university entrance exam. The family notices his difficulties but always finds an explanation for what he is going through. They believe that it is a period of change, a difficult phase that he will surpass. Gabriel spends most of his time in his room, studying. He loses interest even in watching the soccer games of his favorite team. This behavior worries his parents, but they hope that after the university entrance examination, their son will make new friends and again become the happy and lively person he always was. Gabriel’s family is no different from others; teenagers usually become more independent and do not share everything they experience with their parents. The attitude of Gabriel’s parents to be more tolerant and hope that this phase of their child’s life will resolve itself over time is natural. Unfortunately, Gabriel does not pass the university entrance exam. He sees this as a great defeat, and it increases his isolation and inner suffering. Far from his friends and distant from family relationships, he finds no one to share the difficult situation he is going through. His parents talk to him, try to offer support, and say that he needs to be patient and not give up on his projects. His brother and sister also try to talk to him so that he does not take everything so seriously, distract himself, and understand that the university entrance exam is important, but that he will be better prepared for the next year. However, Gabriel’s suffering is very deep; he cannot express what he feels and share this feeling with other people. What family members tell him reinforces the feeling that they cannot understand what is going on in his inner world. The family should not feel guilty when a person develops a mental disorder; the most appropriate reaction is to develop resources in relationships to help him.

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It should be noted that many young people go through difficult phases such as that described in Gabriel’s case and end up conquering the difficulties. People who have a predisposition to the schizophrenia have greater vulnerability to stress and disappointment in life, and when they happen, they are the elements that trigger the process that brings the symptoms of schizophrenia. We will show, in the last chapter, that research already exists to identify situations such as Gabriel’s, which are called high risk, and to offer support for the onset of schizophrenia or even to prevent it or treat the illness early on. The future of these studies points to prevention work at the beginning of the process that triggers the disease.

A Path That Begins to Change Before the onset of symptoms of schizophrenia, there is a period we call the prodrome. In this period, the person gradually changes the way they perceive the world around them and the relationship with others. We could see that the changes in Gabriel’s life ended up resulting in isolation and difficulty in sharing with those close to him the difficult experiences that life has placed in his history. Let us see how this situation evolves. Gradually, Gabriel began to have different perceptions of things and events around him. He begins to find evidence that the behavior of other people relates to him. We, naturally, do not give importance to what people say to each other or their attitudes; this only happens when people address us. In Gabriel’s case, he becomes suspicious and begins to believe that every event around him is related to him. Along with this distrust, Gabriel also begins to perceive the environment differently. People, the colors of things, and places, as well as the sounds he hears, are sensed with greater intensity. He begins to enter into a way of being in the world marked by great perplexity, which he cannot explain to other people. These new perceptions lead him to isolate himself even more and make his experience of life even more difficult. It is important to remember that these changes in perception and behavior are not due to Gabriel’s way of being; they are not in his control. The changes are taking place, and he sees himself involved in the situation. These changes are related to the imbalance in the chemicals that are responsible for transmitting information in the brain, called neurotransmitters. His family notices his difficulties, and everyone worries about him and the changes in his behavior. His parents try to talk to him, to determine what is going on; they advise Gabriel to escape from this isolation, to try to go out

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with his brother and sister and friends. However, what Gabriel is experiencing is an inner conflict; he himself is not clear about what is going on, and his parents’ advice does not help him much. His parents and brother and sister are well-meaning and try to help him, but Gabriel does not know how to define the things he is experiencing; it is not a clear problem for which help can be asked for to solve or a feeling that can be improved by talking to someone he trusts. It is a set of things that Gabriel is feeling and that he cannot explain to other people, even if it is family members who offer help. People in the community also notice that young people are different, more distrustful, and they do not talk like they used to. However, people do not usually give much importance to acquaintances; they are more concerned about their own lives. This withdrawal from social relationships is one of the factors that feed the stigma about the disease as distance favors the maintenance of prejudices, which are a negative and preconceived view of people. Gabriel continues to isolate himself and distances himself even from his relatives. His perceptions are very different, and his thoughts are marked by a distorted view of what is happening around him. It is important to emphasize that our character has no notion at all of what is happening to him. Gabriel finds himself on a path that begins to change. He has no inner resources to deal with the perceptions and impressions that situations and relationships present him with. In addition, the people who love him, his family, do not see any results in their attempts to help him out of this situation. This is a phase that disorientates everybody in the family, and the most common reaction is to believe that things will get better and that the person will overcome the bad phase they are living through. However, in the case of schizophrenia, things are more complicated than the person and family members’ ability to find a way out. Ideally, they should seek help from health care professionals, but usually, until they receive this kind of help, people resist and maintain hope that the problem will be solved.

The Other Path Schizophrenia presents itself in a person’s life as another path with which they will need to learn to live. For many, at the beginning, it is a seductive experience, but it soon becomes frightening. The symptoms form a network of experiences in which each symptom gives meaning to the others. Only with time and treatment does the person learn to live with this path. Through

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Gabriel’s experience we shall describe some of the main symptoms of schizophrenia and, whenever appropriate, how they are related to each other. Gabriel begins to attribute meaning to the different perceptions he is experiencing and to feel that the things that happen and people’s behavior actually relate to him. This is a very difficult experience, and the way to make sense of it is by thoughts that justify it. His thoughts sometimes get confused, and he cannot interpret correctly what people tell him. In addition, the perceptions of the senses present a completely different reality, marked by sensations that are also different. Gabriel perceives sounds more intensely until he begins to hear voices. The smells and tastes of food are no longer the same. His behavior changes: Gabriel begins to react in a way that makes sense to him but which is very strange to his family members. Our character is experiencing a crisis period in the process of schizophrenia, technically known as an acute psychotic episode. Unfortunately, there is great misinformation about mental disorders and especially about schizophrenia. People usually do not associate the marked changes in other people’s behavior with a disease that needs treatment and are unaware of the resources in their community where they can take the person for an evaluation, and, frequently, fear and prejudice regarding treatment delay the request for professional help. This is what will happen in Gabriel’s case. In an acute psychotic episode, the person can suffer a series of losses; therefore, it is important to seek medical help. The fact that they believe in the experiences they are living and that their critical capacity is obscured by their symptoms causes harm to relationships and damages that are difficult to repair in their inner life. Important relationships that serve as a reference for the person often break down in such a way that the situations created are difficult to surpass. The internal experiences of the crisis are so real, frightening, and deep that they can take a long time to be understood and cause social maladjustment and loss of self-esteem, both of which are difficult to overcome. The changes Gabriel goes through cause strangeness in his family members, and this leads to conflicts in relationships. For family members, it is as if he were out of reality; his behavior does not make sense in everyday situations. This period is marked by a deterioration in relationships because people react to Gabriel according to his strange behavior. It is only when the family can no longer cope with him that they seek help from a doctor, who recommends a psychiatric follow-up. This will be the beginning of a long journey to recovery. The beginning of other path that schizophrenia imposes on the person contains great difficulties, both in their inner world and in their relationship with

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people. As we can see, this path has its roots in changes that involve the person’s life as a whole. People in the community who only look at the actions of the person with schizophrenia when in crisis label them as crazy. In addition to this person causing strangeness, they also generate fear. Thus, the community moves away from them, which furthers their isolation. Next, we will better understand what is going on with Gabriel and the main symptoms of schizophrenia.

Perceiving the World Differently There is a relationship of mutual influence between what a person perceives, thinks, and feels. However, to facilitate understanding, we will separately address each of the elements of inner experience. Here, we will address the perceptions of the senses and the way they can appear in schizophrenia through the experiences of our character. Gradually, the way Gabriel perceives the world around him changes without his realizing it. He begins to perceive sounds with more intensity so that sounds to which he did not pay attention before naturally start to be noticed and attract his attention. He starts to hear strange noises, such as knocking on the wall of his room, which makes him think that the neighbors want to annoy him. This process intensifies and brings changes in his way of thinking. He then begins to hear voices. The voices talk among themselves about Gabriel’s behavior; some praise him and say how special he is, and others criticize him and point out his innermost defects. The voices are very real for him; although he cannot see who is talking, he finds himself involved in this experience, which becomes increasingly frightening. Doctors describe this type of experience as auditory hallucinations. What doctors do not always realize is that these voices are not just an auditory experience but take place in a complex context that mixes emotions and thoughts with sensory perceptions. As the auditory hallucinations take shape, Gabriel begins to perceive the things he sees with greater vividness. The colors, the perception of the outline of things, and the movements of people give him the impression that the world has changed and that it is presented in a different way, which is much more intense. This perception also leads him to change his way of thinking. Visual elements to which people do not normally attach importance take on a special meaning. Certain shadows in his house appear to him as the presence of people. When he looks at the blue sky, he sees small transparent shapes

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like faces and places. In his room, when he looks at the lamp, he sees little bugs that he interprets as “intelligent life forms.” Doctors describe this type of experience as visual hallucinations. Gabriel also begins to smell and taste food differently, which, as we shall see, will take on a very difficult meaning for him. Doctors describe this type of experience as olfactory and gustatory hallucinations. These perceptions are lived by Gabriel in a lonely way because he cannot share with his family members what is happening to him. His family notice his different behavior and feel that he is not well but do not know how to approach him and break down the barrier that he himself has raised. The perception of the world in a different way, through hallucinations, changes Gabriel’s life, and he believes in these hallucinations. The world in which he is living is not the same one shared by the others; he is involved in sensations and perceptions that put in doubt the reality he has always lived. It is a very intense experience, and anyone going through what Gabriel is confronting would be disorganized and feel lost. It would be easier to understand much of Gabriel’s different behavior if it were possible to put yourself in his place, undergoing the experiences he is living through. Unfortunately, the people who are living with him in this period become absorbed by his unusual behavior and do not know how to act or help. When living with a person in an acute psychotic episode, most of the time the most important thing is to decide what the best attitude to take is, know what to do to improve the situation and deal with the conflicts, and understand what the crisis is. We shall now address some ways of how to deal with a person in a moment of crisis.

Positive Symptoms W.B.Before I was 16, I was leading a normal life; suddenly I started to have a strange sensation, and I had the impression that the television was talking to me, saying that I was a special person (Superman) and that I was being watched from all sides; I had the impression that I was being filmed. First, I found it very strange and told my parents what was happening. They, like me, did not understand anything. When they told my uncle, my father’s brother, a psychiatrist, I decided that I had schizophrenia. However, the deliriums and hallucinations were intense; I was receiving messages from the television and radio saying that I was the savior of humanity and that I was saving the world. I had the impression that people around me, including my family, wanted to kill me and that there was a conspiracy. I also heard voices praising me, and I heard others saying that I was nothing and criticizing my actions.

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Once, in my room, I had a bizarre hallucination; I saw my soul leaving my body and fighting with this body, and I had the sensation of my soul winning. After that, I reflected and remembered the movie Superman III, where the same thing happened. I had the feeling that people knew what I was thinking and that I had a microchip in my brain. The next day I was watching television when I saw a spiral, and then I felt like I was being abducted by aliens. One of the delusions I had was that I thought my soul had the power to control time with my ideals. I thought I was the composer of the Backstreet Boys’ songs and had the feeling I was the center of the world. I also thought that Renato Russo’s songs were made for me, and that, in his other incarnation and in this one of mine, we would meet and love each other, only he would be incarnated in a woman’s body. What most fed my deliriums was one of his songs—Lost in Space—saying that my soul, like his, came from another planet, just like Superman. I had several deliriums and strange hallucinations that made it difficult to lead my life in a normal way. Today, with the medication, I still hear voices, but the intensity is less. I attend the welcoming group and help my parents at home with small things. I go to my farm, and I am a DVD collector. I manage to lead a happy life.

Another Understanding of Things In addition, that Gabriel begins to perceive the world in a different way through his hallucinations, he also begins to build explanations for these experiences. He begins to have very unusual thoughts and certainties. At first, the perceptions different from the senses are understood by Gabriel as a special ability, as paranormal capacities, and such understanding is initially seductive. However, these experiences go from seductive to frightening, marked by ideas of persecution. Gabriel’s feeling that what people said and did had something to do with him became a certainty, so that now everything that happens around him is understood as part of his experience. Thus, the conversations of people on the street, his mother cleaning the house, television programs, and music from the radio all form part of a plot in which Gabriel feels himself to be at the center of events. Doctors describe this type of experience as a delusion of reference. The voices that say nice things tell Gabriel that he has special powers and the mission to change the world. Everything he feels and the certainty that everything around him happens in function of him confirm what the voices say. These are delusions of grandeur.

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However, the voices that say nasty things to Gabriel claim that even with these powers, he is doing nothing and that it is his fault that bad things such as crime and wars happen in the world. This is the delusion of guilt. Gabriel comes to believe that he is being filmed and that there is a plot between organized crime and the police to persecute him because if he used his powers and solved humanity’s problems, they would be reduced and lost. Although Gabriel sees no camera or physical evidence that he is being filmed, he feels that this is happening; it is an unquestionable certainty. In this context, there is no one to turn to for help, for even the police are suspect. When he begins to smell different smells and food tastes different, he begins to believe that his family wants to poison him so that they will not be affected by the persecution. Gabriel feels cornered and threatened on all sides. These are the persecutory delusions. In these conditions, in which alterations of perception (hallucinations) confirm the different thoughts the person with schizophrenia is having (delusions), it is useless to argue that these things are not happening. One characteristic of delusions is that they are certainties in which the person deeply believes, and there is no way to convince them to change their way of seeing things. Gabriel is going through great suffering, tormented by voices and certain that he is being watched and persecuted. His reaction is to isolate himself in his room as a way to protect himself and escape from these extremely threatening sensations and thoughts, from which he cannot escape. This other understanding of things that Gabriel is living is a very striking experience. Many people with schizophrenia, even after years of treatment, cannot accept that these experiences lived through during the acute psychotic episode were a creation of their brain. The change that this kind of experience provokes causes disorientation in terms of the form of existence in the world, so that the only way for the person to situate themself is to believe that these things actually happened and, thus, to continue constructing explanations for them. This is one of the great difficulties to be overcome during treatment: it is necessary to understand that, for those who live this type of experience, it is difficult to reconstruct an understanding that makes sense in the reality shared with most people. Under these conditions, Gabriel’s family no longer knows what to do and cannot talk to him. He is completely strange, saying things that make no sense to them, spends most of the time locked in his room, and no longer talks to his friends, not even when they call. His parents and siblings suffer for not being able to help him, but deep down they keep hoping that this crisis will pass.

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Reality Can Be Very Confusing Gabriel’s experiences result in a very different relationship with the world, in which his inner reality is disorganized and does not correspond to the external reality shared by other people. The experiences of hallucinations and delusions cause great confusion in his thoughts and perceptions. This process can be perceived in the way Gabriel communicates, how he understands what people say, and how he talks to them. Doctors describe this type of experience as disorganization or disaggregation of thinking. The experiences of delusions and hallucinations are usually lonely, difficult to share, and frightening. People can only tell that an individual with schizophrenia is not well by the way they communicate and react to what they are told. This occurs because of differences in what people share, especially in the content of what the subject says and how they understand what others are trying to communicate. The most common feeling is that it is impossible to have a conversation; such is the extent of misunderstanding. It is a frustrating and exasperating experience for everyone. Gabriel is surrounded by a very different reality; therefore, his way of understanding what people say is affected, and there is a distortion in the interpretation of information. Thus, when his parents try to talk to him, they do not understand the reason for his silence, and when he answers, what he says has no connection with what has been asked. Gabriel is involved in perceptions and thoughts that put him at the center of things; thus, he cannot realize that other people have their own ideas and perceptions which do not refer to him. This self-reference generates an incongruent way of communicating. His brother and sister cannot understand why Gabriel is so different, and when they talk to him, he says incomprehensible things. This is because he jumps from one subject to another without a clear line of reasoning and because he talks about completely unknown or very strange subjects. His brother, Renato, cannot understand what is happening to Gabriel and soon becomes angry, argues, or walks away upset. His younger sister, Julia, realizes that her brother needs help and tries to agree with the things he says even though they do not make sense to her, but she hopes he will get better and realize how confused he is. When Gabriel goes out onto the street and talks to his acquaintances, they soon realize that he is not well and that he is saying absurd things. Quickly, people start commenting that he is going crazy and that it is a pity that such a young man is losing his mind like that. This is the image and the idea that

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people have of the person with schizophrenia: someone with a very strange behavior, who says incomprehensible things and who does not understand the simplest things that are said to him. Friends end up distancing themselves because his behavior is so strange, and everyone is embarrassed, some feeling sorry for him, others afraid. They think it best to avoid being near Gabriel; his company does not please young people of his age. However, Gabriel is living perceptions, thoughts, and feelings that only make sense to him, and just as people do not understand him, he also does not understand what they say and do. His experiences are very intense and cause discomfort, fear, and disorientation, and people do not realize how difficult this is for him. The attitudes of others reinforce the feeling that everything is about him, confirming what the voices tell him and the thoughts of persecution he has. Gabriel is going through a very difficult time, in which the disorganization of his thoughts further alienates him from people and reinforces the symptoms of the disease. He feels increasingly trapped. His parents and brother complain to Gabriel, telling him to stop saying nonsense and to take what they are saying seriously. The only one who can tell that Gabriel cannot act any differently is his younger sister Julia, for he tells her his thoughts and how he is perceiving the world. The disorganization of thought generates many misunderstandings and conflicts in relationships because the behavior of the individual with schizophrenia does not correspond to what people are accustomed to in a given situation. Family members cannot understand that the subject is living a very intense and difficult experience; they expect him to act in a way that corresponds to daily habits; however, he cannot, which generates great anguish.

Faded Colors As Gabriel perceives the world around him differently and his thoughts change, the way he expresses his emotions also changes. He has difficulty expressing what he feels and in perceiving how people express their feelings. Doctors describe this type of experience as emotional blunting. When people talk to Gabriel, they realize that, in addition to his disorganized way of expressing his ideas and thoughts, he also seems insensitive to the world around him. This causes many difficulties in our character’s relationships, especially with his siblings and parents. They feel that Gabriel does not react, both to happy and sad situations; it is as if he had no feelings. An important part of the exchanges in relationships is due to the emotions and feelings that people can share. Gabriel cannot communicate well, and the fact

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that he cannot show emotions makes it even more difficult for him to get along with other people as he is always so distant. His inner reality is marked by great suffering and very intense emotional experiences that are impossible to express in words. He feels persecuted and watched all the time; everything that happens around him is related to what he thinks and perceives. Voices constantly comment on his behavior and reactions. Gabriel lives a reality that is threatening and finds himself immersed in situations that constantly disorient him. The relationship with people is also part of this disconcerting experience that has taken over his life, and he is unable to correspond to the emotions and feelings of those around him. It is from his inner experiences that Gabriel reacts emotionally. Although it may seem to others that he is not feeling anything, in reality his perception is very sharp, and he can perceive the details of the attitudes of others. He can sense when people are ironic, avoid him, or expect reactions from him that he cannot give. Emotional blunting is one of the most painful experiences for people with schizophrenia, and not being able to express this suffering leads to even greater isolation. When people think nothing is happening, there is a whole life that cannot express itself. Gabriel’s family has noticed that he has been wasting away in recent months; he isolates himself in his room most of the time, can no longer talk, often talks to himself, is not in the mood for the simplest of tasks, and is careless about his appearance and personal hygiene. It is as if his colors are faded. It is difficult for those who live with the person who has schizophrenia to understand what is going on in the inner world of their family member, and it is also difficult to realize that these changes are the result of an illness. That is why it is difficult to see a doctor. His parents do not know what to do to help their son get out of this state of indifference toward everything, even himself. For Gabriel, the only way to protect himself from the reality that threatens him and the difficulties with people is to isolate himself, spending most of the time alone in his room. People in the community notice the individual with schizophrenia changing and behaving strangely. Their way of understanding what is happening is to label the person as crazy, and they do not consider the suffering that they are experiencing. The lack of knowledge about the disease keeps people away; they do not realize that with this type of attitude, they are contributing to the worsening of the disease. It is important to understand the importance of dealing with mental disorders with respect; this helps a lot and facilitates the search for and acceptance of appropriate treatments. The family and the community are very important in helping the individual with schizophrenia overcome the difficulties imposed by the disease.

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When people are informed about what schizophrenia is, how it manifests itself, and what its symptoms are, it becomes easier to understand and live with the patient and to know how to help them overcome the difficulties generated by the isolation due to the distressing set of circumstances they are living through. The lack of knowledge is one of the factors that generates stigma in the community on the one hand and delays the search for help by family members on the other.

Lost Energy One symptom of schizophrenia that causes misunderstandings is lack of willpower. In the situation in which he finds himself, Gabriel cannot perform the simplest tasks, such as making his own bed or helping his mother with the daily household chores. This is perceived by his parents and siblings as laziness. Gabriel feels a lack of energy and motivation to do the things he used to do naturally. It is necessary to understand the context he is living and that his lack of will is not simply laziness, as people interpret it. The “lack of will” is a symptom that doctors call abulia. He is living a situation in which his inner world is marked by experiences in which reality appears threatening: his perceptions, thoughts, and feelings show him situations in which he feels persecuted, guilty, and invaded by the voices he hears. Added to this is the difficulty of communicating, understanding, and being understood by others. Gabriel has isolated himself and distanced himself from relationships with other people; he feels misunderstood. The will is a result of the stimuli we find in our relationships with people and in the results we achieve in the tasks we carry out. Gabriel, in the situation in which he finds himself, cannot accomplish things that for others seem simple because he has lost the fundamental conditions to have motivation. He spends most of the time in his room doing nothing; he seldom leaves the house. This is the way he finds to defend himself from a reality that oppresses him, which he cannot fit into. Unfortunately, lack of will reinforces other symptoms that lead to more lack of will. It is a vicious circle in which he feels trapped. His family fails to understand what is going on in Gabriel’s inner world; his parents think that forcing him to do the things that his siblings do will help him to get out of the inertia in which he finds himself. However, these demands from his parents increase his anguish because he is unable to correspond to what they expect. This situation generates in him a feeling of

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inferiority in relation to his siblings and that his parents do not like him as much as they do them. In the community, his friends are starting their professional lives, working, studying, and dating. Gabriel’s parents do not understand what is happening to their son; they wonder where they went wrong in his upbringing. They do not know how to help their son. This lack of willpower is seen as a problem of laziness and generates anguish for him and his parents. However, it is a symptom of schizophrenia. It is not Gabriel’s fault, just as there were no mistakes made by his parents in his upbringing.

Negative Symptoms J.A.O.I have a schizoaffective disorder, which is a mental disorder that mixes symptoms of schizophrenia and bipolar disorder, alternating moments of mania and valleys of depression. In my case depression gets mixed with negative symptoms, discouragement in general and the lack of will to perform routine activities occur very frequently. I often spend a good part of my day in bed or cannot even leave the house for professional activities. The manifestation of my first bipolar disorder crisis and its respective negative symptoms began to occur in the second semester of 1994, after a spiritual retreat in Rio de Janeiro. It started with a crying crisis and a strong cognitive disorientation. Back to work in São Paulo, I began to face serious difficulties in performing routine professional activities and organizing myself on a daily basis. Even with medication, the symptoms persisted until mid-1995, when they finally subsided when I decided to go on a study trip to the United States. After this first crisis, I stopped taking medication and lived a normal life until mid-1998, when I had a second crisis. I went back on the medication and began to have strong depression and existential lack of motivation. I stopped the medication again and had another crisis at the end of 1999 and beginning of 2000. I only adhered to the treatment at that time, but even so I had one last crisis in May 2001. Today, I have been taking three types of medication, an antipsychotic neuroleptic, a mood regulator, and an antidepressant. I still live with mood ups and downs, but the groups I attend at the Brazilian Association of Families, Friends and Bearers of Schizophrenia (ABRE) have helped me a lot to overcome the disease, and I am also one of the facilitators of the welcoming group. This is held weekly in the dependencies of the Schizophrenia Program (Proesq) of the Escola Paulista de Medicina of the Universidade Federal de São Paulo (UNIFESP/ EPM). The negative symptoms of my schizoaffective disorder still persist, but I have been able to control them satisfactorily with medication and individual

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and family therapies. For the future, I have been drawing plans to motivate myself and to reacquire the joy of living as returning to study is one of my goals, taking occasional subjects at the university. The readings I do because of my intellectual curiosity have also helped me combat the negative symptoms of my disorder, and I believe I am gradually overcoming difficulties and regaining a quality of life compatible with my existential expectations.

Cognition and Schizophrenia Some people with schizophrenia complain of changes in attention and memory. Are these cognitive changes part of schizophrenia? The following text discusses cognitive aspects involved in the illness.

Neuropsychology Stella M.  Malta—NeuropsychologistNeuropsychology can be defined as the study of the relationship between the brain and behavior. It is a recent science, which only around the 1980s expanded its field to include psychiatric disorders. Although cognitive disorders have been described since the beginning of the history of schizophrenia, only now do the scholars of this disease have no more doubts that cognitive problems are central in  schizophrenia, to the point of being characterized as symptoms of this pathology. Cognitive impairment in schizophrenia includes problems with attention and concentration, memory and learning, language, and executive functions, for example, having the will to do something, planning how to accomplish it, the ability to solve problems as they arise, and slower task performance. A decline in cognitive abilities is present in most people living with schizophrenia, but there are also those with normal cognitive functioning. This decline seems to begin shortly before the onset of the illness and does not become much worse over time. The importance of diagnosing cognitive deficits is related to the fact that they interfere in various areas of the person’s life, such as in their activities of daily living, in social and occupational functioning, in training for work, in interpersonal relationships, and even in treatment adherence. Based on this recent knowledge, it is more and more common to make a neuropsychological evaluation of the individual living with schizophrenia. This evaluation is performed by applying neuropsychological tests that evaluate cognitive functioning, i.e., attention, memory, learning, executive functions, language, etc. The aims of this evaluation are to verify which abilities and difficulties this person presents and to help in the planning of a specific therapeutic project for this patient, based on the use of the skills that the person has and on the discovery of alternative ways to compensate for the difficulties encountered.

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Another form of neuropsychology performance is cognitive rehabilitation, which is a treatment to recover or decrease cognitive deficits and, consequently, reduce the duration of the social and personal consequences of the disease. Neuropsychology is one of the newest tools in the diagnosis and treatment of people living with schizophrenia that will surely bring great benefits in the recovery of these people.

Paths and Possibilities We have presented, through Gabriel’s experience, some of the issues involved in the experience of developing schizophrenia. Faced with a difficult situation, we know that there is always something that can be done and there are always ways and possibilities. It is important to seek help and not to be ashamed of having schizophrenia or of being a relative of someone who has it. It is a human experience. Renato was at a friend’s house and commented on the difficulties his brother was passing through and how this was affecting the whole family. The friend’s mother, who works in a hospital as a nurse, heard the whole story. She explained that there is a specialty called psychiatry that addresses problems like that Gabriel was experiencing and recommended that they take him for a consultation. From this conversation, Renato told his parents what he had heard. Gabriel’s parents were initially reluctant to accept the proposal to take their son to a psychiatrist as their idea of psychiatry was very negative due to the stories they had heard about psychiatric hospitals. They had relatives who had stayed for a long time in psychiatric hospitals and never recovered, and they were afraid that this would also happen to their son. Until a few decades ago, the only treatment for cases such as Gabriel’s was long hospital stays and ineffective treatment methods. Fortunately, this picture has greatly improved. Today, medications are much more effective and cause fewer side effects, treatment methods have greatly improved, and it is recommended that the person be treated in the community, that is, they go to the hospital for consultations and treatment but continue to live with their family, as with any other disease. However, seeing the son’s suffering, recognizing that they had already tried everything they could and that the problem was only getting worse, they decided to take him to a psychiatrist. Today, it is known that schizophrenia is a disease that has several causes. We know that people who develop the disorder have less resistance to stressful situations, but we also know the effects of

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important biological changes, which have been widely proven. Thus, treatment with a psychiatrist and the use of medications are fundamental for the person with schizophrenia to get out of the acute crisis and achieve stability with the disease. Normally, the psychiatrist should be the first professional to whom to turn to in cases such as Gabriel’s. The consultation with the psychiatrist was long. Initially, he listened to Gabriel alone and then with his parents. The psychiatrist explained to them that the problem was serious but stated that there was a very effective treatment. He tried to explain that the young man had symptoms of psychosis, a disorder that affects the brain and hinders the person’s experiences and that both treatment with medication and follow-up with other professionals, such as occupational therapists and psychologists, would be necessary. The psychiatrist has extensive experience making a general identification of the disease that Gabriel presents. The consultation was more than a simple conversation; the physician was performing what is technically called a “mental state examination” and identified several clear elements widely studied in psychiatry to determine the  precise diagnosis and  the treatment  options. During the conversation with the parents, he sought to reconstruct what had been happening to the young man since the problems had begun. This is a medical procedure in psychiatry. However, Gabriel and his parents left the consultation with a series of doubts about the illness. On what basis was the doctor diagnosing psychosis? What does psychosis mean? Is psychosis the same thing as madness? Did the illness occur because Gabriel’s parents did something wrong in his upbringing? How does this illness progress? Can it be cured? Is this a spiritual problem? Is it really necessary to take medicine? Are these medicines strong? Can they be harmful? Both Gabriel and his family will have to overcome these doubts and resistance until they accept that these are the best treatments for him to recover. In the next chapter, we will address these issues in more depth and discuss the difficulties involved in both the diagnosis and initiation of treatment for the disease.

The First Step Gabriel’s story thus far shows how schizophrenia can present itself as a serious illness that disorients the person and the family. However, this is only the beginning of a change of path in the individual’s life. Throughout this book, we seek to show that hope is possible and that the everyday situations

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experienced by the person with schizophrenia and their family can improve over time. Schizophrenia is not a disease that is naturally resolved just by taking medication as happens, for example, with an infection. In schizophrenia, recovery occurs along a path of this inner construction of the person as well as of the family members. This construction is a learning process that is acquired by living together and through relationships. This happens in the family, with health professionals, and in the community. The first step, whether in a first crisis such as Gabriel’s or during treatment if things become difficult, is to seek a psychiatrist so that together they can investigate what is happening and outline a line of treatment, always based on dialogue, so that family members and the patient understand what the doctor is proposing and report what is working in the treatment and what is not. Medication is essential for the person to be able to recover. For this, the psychiatrist has a deep knowledge of how the brain works and how the medications act and always looks for what is best for each case. Psychosocial approaches, such as occupational therapy and psychotherapy, are also fundamental. These treatments help the person and their families to redesign their paths toward acquiring a quality life. It is very common for people to go for a long time without treatment, looking for alternatives, or solving problems on their own. Unfortunately, in the case of schizophrenia, the longer it takes for treatment to begin (duration of untreated psychosis), the longer and more difficult recovery will be. Gabriel and his parents will need to progress slightly further down the road to reach a clear understanding of the issues that remained after the consultation with the psychiatrist, but the young man will find a path to recovery from schizophrenia with the passage of time and the new relationships he will establish. This journey will be presented in the next chapters of this book.

2 The Path to Diagnosis

How to Understand the Unknown? Our understanding of the world and of things in life is based on what we have experienced and learned. In less than 6 months Gabriel’s disease changed his life and that of his family, entering their lives as something unfamiliar and full of difficulties. The unknown, in this case, a mental disorder, brings with it a lot of anguish, disorientation, and fear. The first consultation with the psychiatrist brought a series of doubts. Gabriel does not think he is sick and feels that the doctor does not understand what he is going through. His parents find it difficult to accept that one of their children needs psychiatric treatment; no matter how difficult it is to live with their son, deep down they were trying hard to keep the optimism thinking that this bad phase would get better soon. In our society there are many individualistic values that are assumed by people and create the false notion that we can solve everything by ourselves. Getting rid of these ideas, accepting the help offered by mental health professionals including a psychiatrist, and understanding that one is facing a mental disorder are very difficult, and people have considerable resistance. The difficulty in accepting the physician’s explanations and the search for alternatives to deal with the situation characterize this period of indecision, which, in many cases, drags on for years, jeopardizing the recovery of people with schizophrenia. In our case, the effective beginning of Gabriel’s treatment will be delayed for some months as a consequence of the doubts and

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 J. C. d. Assis et al., Between Reason and Illusion, Copernicus Books , https://doi.org/10.1007/978-3-031-24556-5_2

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confusion in which the family finds itself. This type of situation is very common, but it harms the evolution of treatment and should be minimized as much as possible. Gabriel refused to take the medication prescribed by the psychiatrist. He believes in the ideas he has created to explain the different perceptions and thoughts he is experiencing. He believes he is being filmed all the time and that there is a conspiracy against him. The voices that only he hears sometimes praise him, sometimes criticize him, and give orders. He interprets everything that happens around him as having some relation to his life. The more intense perception of the senses gives a new meaning to facts that are commonplace for his relatives. Within this context, Gabriel cannot understand that what he is experiencing are symptoms of an illness. Doctors call this difficulty in understanding the disease a lack of insight or criticism of the disease. His parents cannot convince him to take the medication and do not insist because they also have doubts about the need for psychiatric drugs. Ignorance and fear are the main factors that lead Gabriel’s parents not to follow the physician’s orientations. These doubts will have to be overcome, but this is not an easy process. First, Gabriel’s parents will search for solutions, and only when they fail will they look for the psychiatrist again, thanks to the correct advice of an experienced and knowledgeable person. His siblings see Gabriel’s difficulties in a different way. Renato, 2 years older, no longer knows how to deal with his brother, does not understand what he is going through, and, to prevent arguments, starts to avoid him and because of that feels very guilty. Julia, 3 years younger, always had a close dialog with Gabriel and became the person he trusts the most in this new period, the only one to whom he can tell what he is going through and who listens to him and takes him seriously. Neighbors and acquaintances in the neighborhood begin to say that Gabriel has gone crazy. Some are moved by the difficulties that the family is going through; others do not get involved, either because they are afraid or because they are focused on their own problems and do not pay attention to what is happening in the community. There is great ignorance in the community about healthcare in general and even more so in relation to mental disorders. Today, it is known that educating people about health problems and encouraging care greatly reduce the suffering of the population and the costs to the health system. If people in the community understood what Gabriel is going through, they could make an important contribution to helping him and his family find professional help.

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Disease or Spiritual Evil? Religion, in our culture, has the important role of helping people deal with situations of suffering and disorientation. It offers explanations that give meaning to the unknown. Gabriel’s parents will seek help from some religions as an alternative to the doctor’s explanation, and in this they will find a positive orientation. Gabriel believes that he has been sent by God to save the world. Such certainty makes it difficult for him to go to religious services; he refuses to accept this kind of help. However, this belief is a deep religious experience, a very intense faith, in which he takes upon himself the responsibility for the world’s problems. This experience will be better understood in the future and will be very important in his recovery. In addition, a couple who are neighbors, learning of Gabriel’s difficulties, go to his parents to offer help. In a long conversation, they hear about the difficulties the family is going through and talk about the importance of seeking religious help and keeping the faith that some way God will show them. Gabriel’s parents seek help from several religions. The explanations are always similar: he is the victim of a spiritual evil, the harassment of obsessive spirits, or negative energies. They began to pray for their son and to attend church services. Even so, after some months, the family situation worsened. Unfortunately, in the case of mental disorders, there is still much misinformation in the religious environment. As we said earlier, religion plays an important role in many people’s lives. We do not consider scientific explanations to be opposed to religious explanations. The ideal in people’s lives is for the two views to be complementary. Science seeks, through safe and widely tested methods, to propose therapeutic procedures in the area of health to control disease and promote a better quality of life. Science and medicine do not have all the knowledge; there is always research to improve both medications and clinical techniques. Next, we will show the vision of a person with common sense who greatly helped the understanding of Gabriel’s parents. It was at the end of a church service that an elderly woman asked Gabriel’s parents what was troubling them so much. Surprised by the question, they told her about their son and the difficulties the family was going through. The lady listened with great attention, asked some questions during the story, and, finally, after some thought, shed some light on their quest. She said that faith is important and the church is a place of light, where enlightened spirits, or, as many call them, the saints, help people overcome

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their difficulties. However, we cannot forget that we live in a material world and it is in this world that we need to find the way for divine help to occur. She then said that in Gabriel’s case, the way to this help would also be in following medical treatment: “God gave men the ability to learn, and medicine exists to help people.” She concluded: “You must ask with faith that your child’s treatment be good and that God enlighten the doctor so that he will find the best ways.” This simple conversation illuminated the understanding of Gabriel’s parents, which was only possible because they went in search of help for their son. First, they went to a psychiatrist, following the advice of Renato’s friend’s mother, but they had many doubts and delayed the beginning of the treatment. Now, after seeking help in religion, they found an explanation from a person with common sense who gave meaning to all their searches and new courage to face the problem and help their son. Even if people consider schizophrenia to be a spiritual evil, one must use common sense and try to follow treatment for health as it effectively helps to control and improve the situation of the person who has schizophrenia and their family.

Coming to the Aid Gabriel’s parents returned with him to Dr. Marcelo, the psychiatrist. As in the first consultation, the psychiatrist first talked only with Gabriel and then with both him and his parents. The physician noticed a change in the attitude of his parents, who were now more open to dialogue, reported in detail the difficulties they had with their son, and asked how the treatment could help him. With the parents now interested, the psychiatrist was able to explain the seriousness of the situation. He said that Gabriel’s case required immediate action and that he could try treatment at home if the parents collaborated and followed the treatment to the letter, but if the case worsened, it would be necessary to hospitalize him to control the crisis. He explained that during hospitalization Gabriel would be monitored by a team of health professionals 24 h a day. The change in the parents’ conduct is because now they are sure, and they believe that the treatment will help their son to get out of the situation he is in. This attitude is very important for the family to become aware of the need to intervene and help the person with schizophrenia. During an acute crisis, the family cannot count on the person’s lucidity, must always negotiate, but

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must maintain the firm posture that the treatment must be followed and the results must be communicated clearly in psychiatric consultations. Dr. Marcelo explained the difficulties of starting the treatment at home, considering the situation Gabriel was in at the time. It would be necessary to monitor him closely, observe how he would react to the medication, be careful not to let him go out alone, and make sure he took the medication at the prescribed times. In addition, he explained that the medication could have some adverse effects, mentioning the main ones and warning that if they occurred, it would be necessary to immediately take Gabriel to the hospital. People in general have a mistaken idea of psychiatric treatment mainly for two reasons: the first is that there is no laboratory exam that proves that the person has the disease; the second is that the use of pills has become something banalized in our society and people do not take their use very seriously. In reality, during the consultation, the psychiatrist is performing a detailed technical analysis of the person, called a mental state examination, and gathering important information from the family to perform a careful clinical evaluation before prescribing the medication. The drugs that the psychiatrist prescribes are controlled by the authorities due to the need for a physician responsible for their use. They have very specific actions on the functioning of the brain; it is therefore essential to follow the psychiatrist’s prescriptions and report everything that can help you know how the person being treated is reacting. The parents agree to take care of their son at home. Gabriel’s father, Paulo, after Dr. Marcelo’s explanations, decides to take a vacation from work to accompany his son. His mother, Marcia, listens to everything very carefully. This is a difficult moment for Gabriel’s parents as they realize that their son has a serious illness. However, it generates relief because they now leave the phase of doubts and start to face the problem with a view that he can get better. Hospitalization is necessary when the disease poses a risk to the patient or other people and today is prescribed for a short period, just long enough for the drugs to take effect and the person to come out of the acute crisis. (Hospitalization will be discussed in detail in Chap. 4.) Treatment at home has difficulties, as we will see below. The psychiatrist calls Gabriel and, together with his parents, explains that it is important for him to take the medication because it will help reduce his suffering. In front of the doctor and his parents, the young man agrees to take the medication and return for an appointment the following week.

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But What Is the Disease? Both Gabriel and his parents hear the doctor say that he has an illness and that medication will help him recover. They agree to follow the treatment and cooperate with the doctor’s guidelines, but they want to know: what is this disease? This is an important explanation. The physician knows the need to clarify the aspects of the disease based on the reports of Gabriel and his parents, with the purpose of starting a relationship of trust with them as this is essential for a successful continuity of the treatment. Based on Gabriel’s and his parents’ accounts, the psychiatrist explained that the strange things he has been feeling for the last few months are symptoms of an acute psychotic episode. The fact that he hears voices, good or bad, that nobody else hears, is a symptom called hallucination. His belief that he is being filmed all the time and that there is a conspiracy against him is another symptom, called persecutory delusion, as well as the attribution of a new meaning to ordinary facts, as on the occasion when the neighbor put a yellow towel on the window ledge to dry, and Gabriel thought that the man was trying to say that he was effeminate. He thought that the neighbor was doing it on purpose to provoke him and spread the word that he was gay to the whole neighborhood. The impression that everything that happens around you has some relation to your life is another delusional symptom called self-reference. Gabriel is not convinced by the doctor’s explanation and contests by saying that a friend of his has also heard voices and is not taking medicine. Dr. Marcelo asks in what situation his friend heard voices, and Gabriel replies that it was when he used an illicit drug. The psychiatrist then explains that some drugs trigger hallucinations, but this symptom disappears when the effect of the substance wears off. In Gabriel’s case, the symptoms have been occurring for at least 3 months most of the day without any drug being used. In addition, the symptoms have greatly disrupted Gabriel’s life, preventing him from doing everyday things such as meeting his friends, dating, studying, or working. He is becoming more isolated with each passing day. Gabriel’s parents have heard about an acquaintance who had a daughter with similar problems and was diagnosed with schizophrenia. They ask Dr. Marcelo if this is the case for Gabriel. The doctor explains that the symptoms are similar to those that occur in schizophrenia, but in Gabriel’s case, this diagnosis cannot yet be made because it is necessary for the symptoms to last at least 6  months for the diagnosis of schizophrenia to be confirmed. Dr.

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Marcelo says that at this point Gabriel has a condition called an acute psychotic episode, and confirmation of the diagnosis will occur with follow-up over time. Gabriel is not very convinced by the conversation because he believes his experiences are absolutely real and not symptoms, as the doctor says. His parents understood that his strange behavior was not madness but symptoms of a disease that can be treated. This was of great help for them to understand the importance of treatment. The experience of the acute psychotic episode is very striking, and when the person is in this state, they have difficulty accepting that what they are experiencing are symptoms of an illness. Dr. Marcelo’s strongest argument is that the medication will alleviate Gabriel’s suffering. This makes sense to him as he can no longer put up with living in this way. However, the family can help the person a great deal by giving support, trying to understand the situation, always accompanying and negotiating when necessary so that the medications are taken every day and at the right times.

One Way L.C.F.My journey with schizophrenia begins in 1996, when I was 23 years old; I started having sensations that were different from the ones I normally felt. Just like Gabriel, the character in the book, I had a productive life, I studied and worked. As the years went by, responsibility increased. When I finished high school, I took a course to enter a public university; in the first year, I did not succeed. In the second year, I took the course again, and in July I quit my job to dedicate myself exclusively to the university entrance exam. At the end of the year, I took the exam and got into a public university. For the first 2 years of university, I did not work because the course was full time, and I believed I was doing something productive. In the third year, the difficulties due to the first symptoms of a mental illness began. I felt different; I commented on this to my classmates: one thought it was funny and that it should be normal, in another it aroused curiosity. As a result, I thought that I should be observed by mental health professionals; I soon made an appointment with a psychologist. I started seeing a psychologist on a regular basis; we discussed my issues, and she assessed my possible disorders. After several evaluations, she concluded that I should be treated with medication, so she referred me to a psychiatrist for treatment. I made an appointment to see a psychiatrist. At the first appointment, we discussed my situation, and he made another appointment, but I did not go as my crisis state was quite advanced, and my family realized that I was quite

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altered and should attend a psychiatric emergency room (Psychosocial Care Center [CAPS]). I was taken away by my family members, interviewed, medicated, and stayed the day under observation. The next day, I went to a psychiatric hospital to be admitted and took the indicated medication, but after a week of treatment, the picture only got worse. Then, my family took me to another hospital that had a psychiatric clinic, and there I was observed by a psychiatrist. He started prescribing antipsychotic drugs because he diagnosed me with psychosis. After 2 years I had a second crisis and went back to taking the typical medication. In 2000, I joined PROESQ, and after some consultations, I started taking another medication, and my diagnosis of paranoid schizophrenia was closed. With the diagnosis, I sought information about the disease and how to treat it and started to adhere to the treatment.

Coexistence Is Not Always Easy Family life, when one of the members is affected by schizophrenia, is marked by difficult moments. A great deal of patience and understanding is needed from everyone. It is necessary to understand that the person is going through a disorienting situation and that their reactions do not correspond to what the family members expect. There are no rules to have a good relationship, but there are some situations that can be avoided, as we will see in the case of our character. Returning from the consultation, Gabriel’s father opens the medication provided by the psychiatrist and takes it to his son’s room. However, to his surprise, the young man refuses to take it. Paulo is irritated as he believes his son must obey him and do what all have agreed is best. Even after a heated discussion, Gabriel still refuses to take the medicine. In time, both will learn that in these situations it is no use “fighting” with the person who has schizophrenia; the best way is to try to understand the cause of the refusal. Marcia does not know what to do when she sees Paulo arguing with their son. She talks to her husband, saying she will talk to Gabriel later. After a few hours, she goes to talk to her son in his room, saying that she and her father are worried about him. She asks him to take the medicine, but he flatly refuses. Already weakened by the consultation and Gabriel’s argument with his father, Marcia begins to cry in front of her son, and her husband has to take her into the living room to console her. Gabriel’s parents are repeating a pattern of behavior that they are not aware of. This is the best way they have learned to deal with their children. In these situations, it is common for relationships to be emotionally intense. Although

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they are trying their best for their child, it is known that very intense discussions do not help the person with schizophrenia. The most promising path is to understand the person’s experience with the illness and to negotiate. Gabriel’s younger sister Julia came home from school and heard from her parents what was happening. She went to talk to her brother and asked him what was happening to him. Gabriel, who could tell his sister about his experiences, said that the doctor was well-meaning, but the voices told him that the medicines had been replaced by poison. For this reason, he would not take them. When Julia understood why Gabriel did not want to take the medicine, she was able to negotiate with him. Julia noticed, on the box of one of the drugs, a customer service phone number. Next to Gabriel, she called the laboratory and said she suspected that the medication might be adulterated. The person who answered her asked for information that was on the package and on the medicine’s labels; after a while waiting, she confirmed that it was not adulterated. They did the same with the other two drugs. Julia tried to show Gabriel that it was not the first time that the voices had deceived him and that the medicines were meant to help and not harm. Only then did Gabriel agree to take them. As difficult as it may be at first, it is necessary to establish channels of dialogue with the person with schizophrenia and understand their motives. This is not always an easy path, but over time it is the most effective. The person with schizophrenia, even in an acute crisis, is able to tell when attitudes and conversations with family members are well-intentioned. The person may have difficulty accepting certain things, for example, if family members say that what they are experiencing is not real and that it is just an illness. Whenever possible, it is good to avoid confronting the person with the illness. The understanding that what one is experiencing is an illness comes with time, and the help of health professionals greatly improves such understanding, as will be seen later in this chapter.

The Start of Improvement Once treatment has begun, people, especially family members, expect results to appear quickly. In schizophrenia, for the treatments to show results, the process occurs on a scale of weeks to months; it is necessary to maintain realistic hope and patience. However, improvements can be noticed within a few days, as we will see in Gabriel’s treatment. The start of treatment was closely monitored by Dr. Marcelo. Gabriel feels his symptoms decreasing. The voices appear less frequently, and the feeling of being filmed and persecuted decreases. He can organize his thoughts better

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and understand conversations with his brothers and parents. A certain fear still persists, and Gabriel cannot understand where it comes from; and he still cannot organize himself properly in his daily tasks. His parents accompany him to the doctor’s appointments. Gabriel speaks very little in the consultations. His parents report that he has improved, but he is quieter and different, more withdrawn, as if he were in another world. The physician explains that this is due in part to the disease and in part to the medication and that it is necessary to monitor Gabriel and gradually adjust the doses of medication as his symptoms improve. He indicates occupational therapy treatment and explains what this consists of and why the young man will benefit from it. Gabriel and his mother then went to their first appointment with the occupational therapist, Fatima. She received them in a room full of paintings, clay objects, and mosaics, among other objects, some ready-made, others not. She explained to them that the main aim of the treatment was to help Gabriel organize his daily life and perform projects with a beginning, middle, and end. She explained that each piece in that room was part of someone’s project. She said she had talked to Dr. Marcelo, and a first activity would be for Gabriel to go to occupational therapy alone. Gabriel starts going to consultations with Fatima once a week. Every Wednesday, he gets up early, takes a shower, and gets ready for these appointments. They talk about Gabriel’s daily life and how it can be improved. During the sessions, they start working with painting techniques. As the treatment with Dr. Marcelo and Fatima progresses, Gabriel begins to come out of the isolation he was in. He goes back to watching television with his family in the evening. He helps his mother by washing the yard and in other small household activities. He still finds it difficult to talk to his neighbors. Sometimes he hears voices and, depending on the situation, still thinks that what people say is about him, but the intensity of these perceptions has greatly decreased compared with the beginning of treatment. This beginning of improvement is very important because it is from this that the person with schizophrenia builds the foundation for a satisfactory recovery in due course. There is no way to skip this phase; many people with schizophrenia cannot go through it in a constructive way. Because of this, they live in a more isolated manner, have difficulty in relating to others, and live without projects and perspectives. It is necessary to understand that this is a stage to be overcome before achieving things that require more from the individual with schizophrenia. In this sense, psychosocial treatment such as occupational therapy and psychology is complementary to psychiatric treatment.

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Occupational Therapy and Rehabilitation Fernanda A.  Pimentel—Occupational TherapistThe rehabilitation process in schizophrenia requires a set of care activities for people living with it to help to improve their quality of life and consequent social reintegration as its consequences include important ruptures in the course of their lives. This care, built from the relationship of listening and exchanges between those involved (family, professionals, community), has people with schizophrenia as the protagonists of this construction. Among the professionals included in this process is the occupational therapist. When we hear the term “occupational therapy” (OT), we are reminded of ideas such as “occupying our minds is good, we forget our problems,” “I'm going to crochet, it is therapy for me,” or “doing something productive is good, we feel more useful.” From these conceptions, the importance and value of occupations and activities in our daily lives can be perceived, but OT as a profession has aims that go beyond these conceptions. Occupational therapy is based on people doing things, being occupied, and their relations with people’s daily lives. It intends, through the construction of the relationship between therapist, patient, and their activities, to create a welcoming space in which it is possible to promote the construction of projects that aim to discover and conquer new paths, discover and rescue the potentialities and abilities of each subject, and recognize limits and possibilities. The doing, in this therapeutic process, enables the rescue of the power to act and thus transforms not only the activities but also the relationships and daily life. Occupational therapists take part in public services such as the CAPS— Psychosocial Care Center, mental health or specialty outpatient clinics, basic health units (BHU), psychiatric wards, and in private clinics and offices. The interventions of these professionals can be individual or in groups inside and outside the institutions, together with other professionals who make up the multiprofessional team. OT provides this network of care for people living with schizophrenia and is an important tool in the rehabilitation process of these people. It works as a bridge that facilitates the resumption or creation of goals to achieve an active, productive, autonomous, meaningful, and pleasurable life.

Is He Crazy? People give many meanings to the word “madness”; in general, they associate it with a change in one’s way of being, a permanent loss of reason and autonomy, which can lead to a loss of control over one’s actions. Many people think that madness has no cure, and as a consequence, people who go crazy should

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be hospitalized permanently because they are not trustworthy and can become dangerous. Gabriel’s family does not know what to think about him. They know that the neighbors say that their son has gone crazy, and this causes great discomfort. They go to Dr. Marcelo, distressed by this question: after all, has Gabriel gone mad? The doctor listens to what the parents have heard from the neighbors and realizes how difficult this is for them. The psychiatrist explains that “madness” is a word that people have used for centuries to explain what they do not know; they call people who have behavior that is not the same as everyone else’s, generally associated with lack of control (inattention), crazy. He explains that Gabriel did not become “crazy”; he has a disease that requires treatment. This disease can cause moments of lack of control, but with treatment it is possible to control the symptoms, and in time Gabriel will be able to understand what is happening to him and deal with the disease. With the appropriate treatment, he will spend most of his life free of situations in which the symptoms become more intense, and only on rare occasions will he present situations of lack of control. The parents talk about the difficulty, especially the elder brother, of living with Gabriel. The physician realizes that the young man’s disease is distressing the whole family and that explaining the mechanisms of the disease at this time will not help them much. He says that at the hospital there is a welcoming group for families, and it would be good if all the family members could take part in it as it may help them deal with what is happening. The first session in this group was remarkable for everyone as they were able to talk about their experiences and hear the experiences of other family members of people living with schizophrenia. The parents talked about how difficult it was to cope with their son’s problem. Julia thinks that her brother is just different and that everyone has the right to be the way they want to be. Renato remained quiet until his brother spoke. Gabriel said that he is very afraid, he hears voices, and he feels that he is being persecuted and that people are always talking about him, but now he is much better, and before he could not even leave his room. Julia said that she likes her brother just the way he is and hopes that the treatment will help him to suffer less. His parents agree. Renato was then able to open up and said that he likes his brother, but he was afraid to speak his mind because he realized that it only made things worse, so he avoided problems; however, he said that he would change and stop avoiding his brother. The therapist was able to show, based on these statements, that Gabriel has his problems but that everyone has their own problems to be understood and clarified and that this was a space to stimulate everyone to talk openly about their problems and broaden the dialogue to daily family life. By doing this,

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each person could discover the problems of the others, and it became easier to deal with difficulties. This understanding is fundamental: the illness affects the person with schizophrenia, changing their way of being in the world but also brings issues to other family members, and each person has to make an effort to understand and learn to deal with their own difficulties so that living together does not revolve around the problems of the ill person. This, on the one hand, makes it possible to deal in a more focused way with the individual with schizophrenia, and, on the other hand, it opens up space for each family member to continue their life, with the natural demands and activities of daily life. With this understanding, the family is less vulnerable to attitudes of incomprehension, discrimination, and stigmatizing comments from people in the community who ignore the human issues to which everyone is subject, and mental disorders are some of these issues. Schizophrenia is not madness but rather a disease. “Madness” is the incomprehension, neglect, and lack of dignified treatment for people who live with the difficulties imposed by schizophrenia and do not have access to quality treatment such as that Gabriel and his family are receiving.

The Path to Diagnosis The path to the diagnosis of schizophrenia does not always follow the course that Gabriel and his family took as it is necessary to follow treatment with a psychiatrist for at least 6 months so that it is possible to know if what the person has is really schizophrenia or whether the person has another mental disorder with similar characteristics. Many people drop out of treatment when they improve a little or refuse to take their medication. In addition, it is not always possible to follow so-called psychosocial treatments such as occupational therapy and psychotherapy, and neither is it easy for the person and their family to deal with the diagnosis of schizophrenia. Let us see how this process happens in the life of our character. Gabriel showed a progressive improvement with the treatment. Gradually, during the final months, the voices became less frequent until they disappeared. He no longer feels so persecuted, and the thoughts that he was the “center of things” that happen around him are losing strength. However, he is becoming aware that he no longer has the same speed of reasoning, that he has more difficulty than his brothers in the things they do together, and that he has problems talking to people and keeping the conversation going. This makes him somewhat disgruntled with life.

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In the consultations with Dr. Marcelo, in which he attends with his parents, Gabriel complains about these difficulties. The doctor tells him to be patient and not to give up. He asks him to gradually go back to doing the activities in which he has more difficulty because he should improve with time. This may be a long and exhausting process, but it is essential not to be discouraged so that he can explore his full potential. He says: “Gabriel, we all have limitations, but we must learn to deal with them and, as far as possible, overcome them.” Gabriel’s parents always ask what the diagnosis of their son is. The doctor carefully evaluated the case until he was sure of the diagnosis. In a long consultation, he showed that the diagnosis of the disease that the young man presents was schizophrenia. In this consultation, he took care to clarify all the doubts of Gabriel and his parents. Their first reaction is disappointment because they think schizophrenia is a very bad diagnosis. They remember the daughter of an acquaintance who has the disease and a severe impairment. The physician explains that schizophrenia manifests itself in each individual in a different way; one cannot compare people. There are some cases that evolve without major impairments in the functioning of the subject. He said Gabriel has had a good evolution thus far and that should follow the treatment to maintain what has already achieved and improve even more. Accepting the diagnosis of a chronic illness is difficult for anyone. In the case of schizophrenia, this diagnosis is accompanied by a series of negative definitions that people end up assuming as an irremediable reality. For this reason, we avoid, throughout this book, working with definitions and prefer to focus more on experiences and possible paths, through which we can present practical and real experiences of problem-solving through the experiences of the characters. The psychiatrist shows Gabriel and his parents that the diagnosis is not a sentence handed down by a judge. He explains that it is only to improve Gabriel’s understanding of the things he is experiencing and to improve his treatment. He says, “Schizophrenia does not define who you are, Gabriel, just understand it as a disease you need to take care of; you are much more than the disease you have.”

The Importance of the Doctor-Patient Relationship Marcelo Q. Hoexter—PsychiatristThe diagnosis and adequate treatment of any psychiatric condition depend on two very important factors that should never

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be separated: the technical-scientific knowledge of medicine (signs/symptoms; medications; side effects) and the relationship established between the physician and the patient. Without the appropriate technical-scientific knowledge, the physician will not be able to research, together with the patient, life circumstances, behavior, family and personal relationships, and signs and symptoms that will help the appropriate diagnosis. If the medical diagnosis is not made correctly, it is unlikely that the proposed treatment will benefit the patient and reduce their suffering. However, having only technical-scientific knowledge is not enough. Another very important ingredient for the success of the treatment is the doctor-patient relationship. This relationship is based on the establishment of a bond of trust between the physician and the patient and occurs when the professional is able to recognize, welcome, and provide continuity to the suffering of the patient and their family. Proper communication between doctors, patients, and family members is essential to maintain this bond. If the bond and communication are not adequate, the question is as follows: who would follow the advice of a professional if there were no trust? Who would take medications if the beneficial effects and side effects were not explained? Who would undergo treatment if their doubts and anguish were not valued? Thus, it is up to the physician to express themself in an appropriate manner, with a clear understanding of the facts. It is up to them to clearly guide patients and family members using appropriate language, as well as to be prepared to be questioned about the diagnosis and therapy. It is up to the physician to give orientation regarding the symptoms and behavior of the patient and explain why the diagnosis is “A” and not “B.” It is up to the physician to explain why they chose medication “X” instead of “Y,” as well as to provide guidance on the possible side effects of medications. It is up to the physician to recognize that the suggested therapeutic interventions do not always have the best results. Finally, it is up to them to listen and respect the difficulties of patients and families, together seeking the best alternative. This is the doctor-patient relationship.

Is It Curable? Gabriel and his parents ask Dr. Marcelo if schizophrenia is curable. This is a very important question, and it is necessary to more closely understand what it involves. The doctor knows that this is a very important moment in the treatment because the way Gabriel and his parents understand this question will determine the way they will relate to schizophrenia and its treatment. The doctor explains that medicine knows the cure for few diseases, but it proposes treatment for many of them so that people can live better and with

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quality. In the case of schizophrenia, some of the carriers (13%) presented only one psychotic episode and afterward returned to their normal functioning. For the other carriers, medicine still does not know a cure, but there are efficient treatments that help them to live with quality because they prevent relapses. Gabriel asks Dr. Marcelo if he will return to normal. The doctor answers that it is not about normal or abnormal: schizophrenia is a disease that changes the path of life; the question is whether it is possible to live well and be happy. It is possible to live very well, provided that the person who has schizophrenia learns to live on this new path. Gabriel asks him to explain further. The doctor answers with examples: “Gabriel, with Fatima you have learned to paint very well and to make beautiful pieces in clay and mosaics, in addition to organizing your daily life, in which you are productive. You help your mother at home, you help your father when he brings work home from the office.” Gabriel asks, “However, my sister studies, my brother works, and I can no longer go to college or work, is that what I mean by normal?” The doctor replies, “Gabriel, we all have limitations, that does not mean we are not normal. Most of my doctor friends failed at least twice in the entrance exams to get into medical school. The important thing is to take care of yourself, taking one step at a time. It is not written in any medical book that you cannot work or study, you do not have to give up your aspirations because you received a diagnosis of schizophrenia.” Gabriel then complains that he no longer has friends as before because people think he is weird. Then, the physician reminds him of the times he went to the movies with his sister and her friends; he also remembers the times he had fun with his brother watching his team play at the stadium. He said that it does not matter what others think; the important thing is that he gets along well with the friends he can make and who accept him as he is. It is like this for all people. Gabriel invites his sister to go for a walk in the park. He tells her about his conversation with Dr. Marcelo. Julia listens attentively. Then she says that maybe the problem is not the schizophrenia because if he is treated the disease will be under control. The problem, says Julia, is for him to find things to be happy and not to compare himself to other people. From these conversations, Gabriel opens the door to his inner world to deal with the fact that he has been diagnosed with schizophrenia. Julia is a sensitive and intelligent young woman. After accompanying her brother’s difficulties, she reminds him that his life and happiness are in his hands and are not determined by the diagnosis he received. She represents the

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common sense that should prevail when we are faced with a health problem that has no immediate solution, as is the case of schizophrenia. Many people, when faced with the diagnosis, either do not accept it or surrender, not being able to deal with reality as it presents itself. We will see, throughout the book, how life is dynamic; it is made of difficulties but also of opportunities and possibilities.

A Necessary Learning Through Gabriel’s story we show how a treatment process that starts with an acute psychotic episode until it reaches a diagnosis of schizophrenia takes place. We know some of the numerous difficulties that people, both family members and the individual who has schizophrenia, face. Initially, a major difficulty is understanding the need for treatment; then the difficulty is obtaining the treatment, and then the greatest difficulty is in accepting the proposed treatment. We have tried to show, with Gabriel’s example, that this process is possible as it is based on real cases we know. Our aim is to show a reasonably successful case of follow-up to diagnosis so that our readers can be guided through their individual questions. With this material we hope that people with the disease and their families will more quickly become aware of the problem, seek help, and follow the treatment. In Gabriel’s case it took several months for them to seek help and several months for them to effectively start the treatment. It is important to know that the shorter the time between the onset of symptoms and the treatment, the better the person will evolve. Just as we know successful cases such as Gabriel’s, we also know more difficult ones, but we see that realistic hope is always the best choice, no matter how difficult the situation is. Jorge, one of the authors of this book, only learned to deal with schizophrenia 18 years after the onset of the disease and four acute crises. However, we believe that it is not necessary to go through all these difficulties to deal satisfactorily with this disease. We hope to show the importance of dialogue with health professionals, always trying to discover the best ways. We also hope to highlight the importance of participation and welcoming of family members so that both they and the person with schizophrenia can find an understanding that brings successful good coexistence. This is a necessary learning; no matter how many crises the individual with schizophrenia has had, we understand that the dialogue and welcoming of the person’s issues, both by health professionals and family members, are the best

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way to change the situation in which the carrier finds him or herself, to start building ways to redesign their life path, taking advantage of opportunities to acquire important understandings and to find a place in the world to have a good quality life with family and friends. The great challenge for the person with schizophrenia and their family members is in learning to care for the disease but also to care for the quality of life and relationships. The misunderstandings and the lack of acceptance end up becoming a great obstacle, which close the possibilities that need to be built in daily life. There are no rules or prescriptions to face this challenge; we know that common sense and sharing the burden of difficulties with other people are good strategies to face and overcome issues for which we cannot find satisfactory practical answers. The diagnostic process represents a beginning. The treatment of schizophrenia is necessary for an indefinite period of time. We will show below, through Gabriel’s story, how the process until stabilization in front of schizophrenia can take place.

3 What Is This Disease?

 cientific Understanding Decreases the Stigma S of the Disease In the case of Gabriel and his family, it is very difficult to understand that his problems and inner experiences are linked to living with the symptoms of a disease that also happens to other people and families. This understanding can be very useful: that there are treatments and that the person is greater than the disease and that with treatment they have more possibilities and are able to be what they actually are, with much lower levels of interference from the disease. In this chapter we present in a simple way how the results of extensive scientific research in different areas contribute to a better understanding of different aspects of schizophrenia. It is a disease that results from a number of interrelated factors that interact throughout a person’s lifetime, from the time of its formation in the mother’s womb. It is understood, therefore, that schizophrenia is a multifactorial disease and that its treatment involves different professional backgrounds in mental health. Demystifying schizophrenia involves understanding what is going on at a broader level, that is, how it looks from the perspective of people in society. People such as Gabriel and his family can then understand that what they experience is not an isolated case but rather affects many other people all over the world. They can also understand that they are not victims of a perverse society that oppresses the weakest, who must be content with what is offered to them. The main organ affected in schizophrenia is the brain, and the symptoms of the illness are the result of changes in its functioning. Comprehending this © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 J. C. d. Assis et al., Between Reason and Illusion, Copernicus Books , https://doi.org/10.1007/978-3-031-24556-5_3

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brain dysfunction helps to understand why people with schizophrenia may act differently from people without the illness. It also helps to understand that schizophrenia is a disease similar to others in medicine (e.g., diabetes and hypertension), where the relationship between genetic factors and environmental factors that cause the disease can be studied. These factors do not imply that the person is a different or inferior human being; it means that the person, in addition to treating the biological aspects, also needs to develop understandings and abilities to live well with themself and in relationships with other people, hence the need for psychosocial treatment such as occupational therapy, psychology, and social work. Schizophrenia affects several dimensions of sophisticated brain functioning responsible for processing cultural information, life experiences, cognitive processing, and emotional functioning. It thus has profound implications in the way the individual sees the world, how they relate to people, to work, and to leisure. Having schizophrenia does not always limit the individual’s life as each person has their own way to deal with the difficulties it imposes. Many find highly creative solutions that make them fascinating human beings. However, many people with the illness live with immense difficulties in finding their “place in the world”; for these people, we propose that it is possible and very useful to understand that the illness does not limit their human qualities. The following are some areas of scientific research in the understanding of schizophrenia:

Epidemiology and the Impact on Society Epidemiology methodically studies how disease and health occur in human populations. “Prevalence” is a term in epidemiology that indicates the percentage of people in the general population who have the illness over a period of time or a lifetime. Studies show that between 0.4% and 0.7% of the general population develop schizophrenia over a lifetime (prevalence). Schizophrenia occurs in all cultures but at different rates. There is a ratio of 1.4 men for every woman affected, that is, it affects 40% more men than women. From the 2000 census of the Brazilian Institute of Geography and Statistics (IBGE), it is estimated that there are 1.75 million people with schizophrenia in Brazil. “Incidence” in epidemiology is the term used to indicate how many people became ill with a disease in a given place and period. For schizophrenia, it is estimated that there are between 1 and 2 new cases per year for each group of

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10,000 people (incidence). However, recent studies show that the incidence is higher in urban centers and lower in little urbanized or rural regions. Thus, like any illness, schizophrenia causes an impact (burden) for the person, the family, and the society. It is important to know how this happens in order to plan treatment and health policies to care for all those affected in society. We will try to clarify how the burden occurs on these two levels, the individual and the population. From the individual point of view, schizophrenia is characterized by acute crises that, if well treated, last around a month or less and by periods of remission that can last for years, also if well treated. The central issue is that periods of crisis profoundly affect the life of the person with schizophrenia and their family, making reintegration during periods of remission very difficult. This is because the experience of becoming psychotic or “going crazy” has important repercussions both in the person’s way of functioning and in family and social relationships. During periods of crisis, the person displays very different beliefs and behavior, which can cause strangeness and sometimes fear in family members and friends. In addition, the person may withdraw from or break off very important personal relationships. When they enter the remission period, everything becomes more difficult because their network of relationships is greatly reduced. For some people, this network is reduced to the family, who provide support and care, and to health professionals, who treat them. Considering that the treatment facilities in Brazil are not able to attend all people with schizophrenia, the burden on the family is greater and causes great problems for many people with the disease who are without support, which can lead them to extreme situations, such as becoming homeless. From a population perspective, burden is described by the World Health Organization (WHO) by means of “disability-adjusted life years lost” (DALYs), which is the sum of two elements: (a) The first element is years of life lost (YLL), which measures how many years a person lives less than their life expectancy due to the influence of the illness. In the case of schizophrenia, the burden related to the disease leads people to live on average 10–15 years less than the general population. (b) The second element is years lived with disability (YLD). It should be taken into account that approximately one third of people with schizophrenia have a good recovery, one third have a recovery with significant losses, and one third deteriorate over the years. (c) The burden of schizophrenia and other illnesses in the population is calculated by adding years lost (YLL) to years lived with disability (YLD).

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Knowing the burden at the individual level is very important in treatment to plan, together with the individual and the family, a therapeutic project that helps people to live better and to face the difficulties that the disease brings to daily life. Knowing the burden at the population level is very important to define investments in mental health, considering that health resources are scarce and should be well used to meet the needs of everyone. It is also important so that each person with schizophrenia and their family can make the best use of the treatments that are available, that is, consciously using the therapeutic proposals and taking the medications in a dialogic manner with the physician. Gabriel’s story will show that facing the burden of schizophrenia is not a matter of “rational choice” but rather a necessary learning to effectively build a quality daily life.

Which Body Organ Is Affected by Schizophrenia? When we talk about a disease, we immediately think of which organ of the body it affects. From the symptoms, one can infer that the affected organ in schizophrenia is the brain, which determines how we think and perceive the world. As the most complex organ of the body, the brain is responsible for elaborating what we think, and dysfunctional processing may give rise to delusions or disaggregation of thought. It also processes sensory information from sense organs such as hearing, sight, touch, and taste, which, if altered, can trigger hallucinations. The brain processes all the most sophisticated functions of the human being such as feelings, desire, and socialization, and through it we make decisions. Therefore, diseases that affect the brain influence one’s way of being and are directly linked to negative symptoms like apathy, difficulty in doing something, problems to make contact with other people, and emotional withdrawal. Thus, in response to the title of this section, the problem occurs in the brain and is only perceived through changes in the person’s behavior. The functioning of the brain in schizophrenia has been the object of a great deal of research. Our brain begins its development (neurodevelopment) during gestation, that is, inside our mother’s womb; however, it is not born ready. Much of its development takes place after birth, and the phase in which this development is most pronounced is until late adolescence and early adulthood. Just as each face or fingerprint is unique, each person has a brain that develops in a unique way—this is no different from the rest of the body. Our legs, for example, also develop from environmental stimuli and genetic

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predispositions. A soccer player will have a more muscular leg to kick the ball than someone who doesn’t play, but different soccer players will have more or less muscularity according to particular genetic factors. This is similar to the brain: what determines its development is the interaction between each person’s genetic load and their interaction with the environment; cognitive, affective, socialization, and motor stimuli are fundamental for it to establish itself in a healthy way. Researchers have shown that the disease is the result of the relationship of the development of our brain over time, that is, it occurs from all the experiences that stimulated it during its maturation and not only in the period before the onset of symptoms. Thus, the healthy and preserved part of the person can be a central element to be affected by drug and psychosocial treatment.

Genetics and Schizophrenia Many biological factors and their relationships with all lived experiences are involved in the onset and development of schizophrenia. Dr. Ary Gadelha’s lecture, transcribed below, helps to clarify the genetic factors involved in schizophrenia and how they interact with environmental factors.

Ary Gadelha de Alencar Araripe Neto Psychiatrist One of the most common questions—and perhaps the most difficult to answer when studying schizophrenia—is precisely why some people have symptoms such as delusions or hallucinations. Genetics is one of the sciences that has contributed the most to answering this question. However, after all, what is genetics? Genetics is the science that studies genes. Genes are portions of DNA, a substance contained in the nucleus of our cells, which contains information for each of our characteristics such as the color of our eyes or skin and our height. Genes would be like a recipe for us, but who we actually are goes beyond the information they contain. Environmental factors such as diet, sports activities, and education shape the genetic characteristics in a way that makes each individual a unique being with their own characteristics. An important piece of evidence that genetic factors influence schizophrenia is the observation that there is an increased family risk for the illness. For example, the prevalence of schizophrenia in the general population is estimated to be approximately 0.7%, but once a person is affected, the risk of another person in

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the same family (first degree relative) being affected rises to approximately 8%. Although the probability of being affected remains low, this represents an eightfold increase in the risk of developing the disease. In addition, studies with identical twins show that when one is affected, the chance of the other being affected is approximately 44%. In addition, the greater the shared genetic load with a carrier, the greater the chance of developing the disease (twins > first-­ degree relatives > general population). But if these data suggest that schizophrenia is a “genetic” disease, they also speak for an “environmental” disease since even a genetic copy of the carrier, in this case an identical twin, only develops schizophrenia in about half the cases. This means that genetic factors are important but do not alone determine the occurrence of the illness. They would make an individual vulnerable, and their development would depend on exposure to environmental situations such as birth complications, infections, migration, or drug use. To date, several genes have been linked to an increased risk for schizophrenia. However, none of them alone seems to explain the illness, and we are still far from a test that can tell who has or will develop schizophrenia. While more studies have been carried out to increase knowledge and allow the creation of new drugs or diagnostic methods, early detection and treatment are still the best ways to minimize the impact of the illness.

Changes in the Operation of the Brain: Dopamine The transmission of information between brain cells occurs by means of chemical substances called neurotransmitters. Thus, all brain processes, such as sight, hearing, taste, smell, and touch, as well as everything we think and feel, are information processed by neurons that communicate through neurotransmitters. A widely studied neurotransmitter in schizophrenia is dopamine because: (a) It is known that drugs for schizophrenia act by decreasing the function of dopamine. (b) Psychostimulant drugs that increase dopamine such as amphetamine and cocaine are known to induce schizophrenia-like symptoms, e.g., delusions and hallucinations. DA is responsible for attributing relevance, or rather salience, to environmental stimuli. Thus, it directly interferes with the internal representations we make about our perceptions. Under normal circumstances, dopamine has the role of assigning salience to stimuli linked to pleasure or aversion. It mediates

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the processes of assigning salience (importance/relevance) to stimuli, but under normal circumstances, it does not create stimuli. Through a technique called molecular neuroimaging, it is possible to study these substances in the brains of people who have schizophrenia. Studies performed with this technique have consistently shown that people with the disease have increased dopamine synthesis and release. This is one of the most important and well-proven brain changes in schizophrenia. The increased dopamine function in schizophrenia modifies the natural process of assigning salience within a normal, directed context. Under these conditions, there is an altered assignment of salience of external objects and their representations within the person. Thus, it is assumed that, due to the increase in dopamine, there is an erroneous attribution of salience to unimportant stimuli, which become very important to the individual. Before schizophrenia appears, the person may spend months or years accumulating salient experiences in a subtly altered way, in a period called the “prodromal stage” of the illness. That is, sensations and events that are commonplace to others become very important to the subject. Events with a higher level of stress than the person can handle have as a consequence the structuring of delirium and hallucinations as a way to give meaning to the experience of living with a state of altered salience. From then on the person starts having “psychotic ideas” that serve as a new cognitive schema that guides most thoughts and actions. Gabriel, for example, liked to write, and one of the psychotic experiences he began to have was to believe that famous writers wanted to steal his ideas, which affected his overall functioning. It is therefore possible to understand why there is no point in affirming to a person with very intense deliriums and hallucinations that what they are experiencing is not actually happening as their brain contains altered dopamine and belief in the facts is total. They are unable to criticize what they are feeling and begin to function as if these experiences were totally real. Magnetic resonance exams show that at the moment they have a hallucination, for example, hearing a voice, there is an activation of the auditory cortex, which is the area of the brain responsible for hearing. Therefore, the brain of someone with schizophrenia cannot distinguish whether this experience is “real.” Although dopamine plays an important role in schizophrenia, this is not the only alteration. There is considerable evidence of alterations in other brain neurotransmission systems, including the glutamate, serotonin, and acetylcholine systems. Dopamine is an important element in the lived experience of schizophrenia, but it must be said that it is not solely responsible for the illness. However,

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understanding the role of dopamine allows us to treat the illness with drugs that decrease its function.

Treatment of the Alteration in the Brain: Antipsychotics Schizophrenia is a disease that has treatment. A key part of this is the use of a class of drugs called antipsychotics. The other part is composed of therapeutic approaches, which include occupational therapy, psychology, social work, nursing, therapeutic follow-up, social-occupational participation, and social skills training. Here we shall address the brain mechanisms involved in drug treatment and its results. From this perspective, we shall also point out why and when psychosocial treatment is important. Antipsychotic drugs have in common the function of reducing dopamine activity, blocking its receptors in neuronal synapses (especially the D2 dopamine receptor). The correct use of this type of medication allows regulation of the overhang caused by dopamine, forming an inner platform from which it is possible to cope with the symptoms. However, antipsychotics do not change the deregulation process described in the previous item. Thus, while the person takes the medication, the increased salience provoked by dopamine is controlled, but if the individual stops taking the medication, it becomes relevant again, and they have great chances of having a relapse, with the return of the schizophrenia symptoms. Dopamine receptor blockade reaches an equilibrium state in the first few days, but symptom improvement is slow and cumulative. When the person has an acute crisis (acute psychotic episode), the response to the medication generally becomes clearer after the first week of treatment. To evaluate whether there has been a good response, it is usually necessary to wait at least from 2 weeks to approximately 1 month. The experiences that the person has in the crisis are like the tip of an iceberg that was being structured during the period preceding the illness, the prodromes. Thus, from the person’s point of view, the experiences are understood as totally real. The medication dampens the salience but does not change the contents experienced by the person; thus, the contents of delusions and hallucinations no longer have the importance they had before and allow new experiences to be encountered without the altered salience. Even with symptoms under control, the experiences of the acute crisis (delirium) are a reality for the person. To give meaning to the delusional

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experiences, it is necessary to process them through a path of psychological and cognitive resolution. In this sense, psychosocial treatment is essential to give new meanings to the disease. Most people, even after years, firmly believe that what they experienced with schizophrenia actually happened. Indeed, the experiences provoked by the increased salience happened in the person’s internal reality. It is therefore necessary that treatment is maintained regularly to prevent further aggravation of symptoms. In this way, the use of medication to dampen the overhang caused by dopamine is fundamental, and this enables the person to have relief from the symptoms, which are usually no longer experienced with the previous intense importance. The resolution of symptoms, or understanding the influence of schizophrenia on the experiences one has, has much in common with the mechanisms by which all people give up dear beliefs or strong fears and may involve the process of inner changes of resignification and encapsulation of the contents of delusions and hallucinations. Antipsychotic medications do not remove the core content of the symptoms but rather enable the brain to function without the process caused by the increased dopamine function. Thus, drug treatment is fundamental as it creates conditions for the person with schizophrenia to redesign their life path without being hostage of the altered brain functioning that is the basis of schizophrenia as a disease. This path to be redesigned benefits a lot from psychosocial treatment, almost as if it were one of the pans in a set of mental scales that constantly need to be balanced.

Neuroprogression Our brain, as we have already said, continues to develop after birth, and, like all other organs in the body, its development is particular to each individual and is associated with the uniqueness of each individual’s personality. Studies show that people with schizophrenia have in general differentiated brain development. These subtle differences need to be taken into consideration to understand schizophrenia as a disease and how it progresses. This approach allows you to think about strategies to take care of yourself and live better, because taking care of yourself is also taking care of your brain! Several studies have evaluated groups of people with schizophrenia using nuclear magnetic resonance imaging of the brain and compared them with individuals without the disease. On average, people with schizophrenia have smaller brain volumes and reductions in the volumes in certain regions, such

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as the prefrontal cortex, temporal cortex, hippocampus, amygdala, and thalamus. It is necessary to understand that the differences are subtle and do not make people mentally deficient because the repercussions on cognitive capacities are very small. Additionally, these alterations have little clinical utility because it is impossible to make a diagnosis of schizophrenia through any type of examination. Studies show that the reduction of cerebral structures does not occur due to the loss of neurons but rather to the decrease in the number of connections between them. In other words, what happens is that the ramification of neurons decreases and therefore the connectivity between them. These subtle brain changes generally precede the first psychotic episode and tend to progress together with the disease. Recent studies have shown that the reduction of brain structures is greater in individuals who have more psychotic episodes. Some authors postulate that the presence of acute psychotic symptoms is toxic to the brain. Excess dopamine is related to several factors, such as increased inflammation and oxidative stress and a reduction in neuroprotective substances. Thus, the progression of schizophrenia with many relapse periods (episodes of worsening symptoms) ends up leading to a progression of the disease that can be deteriorating both for the brain and for the life and challenges that the person faces. These findings reinforce the idea that we should try all treatments so that people have total remission of the symptoms (at the beginning of the disease), as well as control of them (in the later stages). They also reinforce the need for relapse prevention. In this sense, medications are fundamental for the brain health of the person with schizophrenia as they facilitate the resolution of the issues imposed by the disease, bringing the main symptoms under control and playing a fundamental role in the prevention of relapses. This information is important for the person with schizophrenia and their family in order to understand that treatment is critical not only to address immediate issues but also to maintain brain protection to prevent relapses.

A Realistic Hope: Neuroplasticity Schizophrenia is a disease that modifies the notions that the affected individual has about themself and their relationship with other people and the world. Taking refuge within themself, they have great difficulty in establishing relationships of trust and admitting that their certainties may be wrong. This hinders learning, relationships, new experiences, and experiences that lead to

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the overcoming of psychological difficulties, which are fundamental for a life with new meanings. Medication is very helpful in that it attenuates the altered salience caused by dopamine, allowing the experience of delusions and hallucinations to lose importance, and with new positive experiences, it is possible to overcome the difficulties brought by delusions and hallucinations. As the person improves, it is necessary to be aware that in part this is due to their personal efforts in a process of overcoming difficulties and building a daily life that can be more rewarding. Another part is due to the action of the antipsychotic medication, which cannot be interrupted so as to avoid relapses. Relapses, besides causing the loss of most of the achievements obtained and preventing the person from having a quality life, also cause loss of brain tissue. With each relapse the person has fewer brain resources to overcome the difficulties brought by schizophrenia. Most relapses occur when the person stops taking medication for a period of time; the dopamine function then increases, and the delusions and hallucinations return. It is necessary to understand that although schizophrenia can cause losses in a person’s functioning, recovery involves a process of redesigning one’s path in life. This requires perseverance from a medium-term perspective. When the person expects quick results from the use of medications and does not take into consideration the need for personal commitment to daily activities, they end up generating expectations that are not realistic and becomes frustrated. In these conditions, if one discontinues the use of medication, the situation becomes more difficult. The brain is in some ways like a muscle—the more we use it, the more it develops. This is the idea behind the concept of neuroplasticity, which offers an important perspective in the treatment of people with schizophrenia. The longer the symptoms last (e.g., delusions and hallucinations), the greater the brain becomes accustomed (trained) to maintain these symptoms, and the harder it becomes to reverse them. Symptoms should be treated with the aim of total remission because their presence—even if attenuated—hinders recovery and favors relapses. Through therapy individuals can develop the capacity for insight, that is, understand delusions and hallucinations as symptoms rather than reality. In addition, recent studies have shown that through cognitive training patients with schizophrenia can improve their cognitive performance and reverse the loss of brain tissue. These strategies, combined with drug treatment, can allow the person to remain stable and improve the conditions in which they live, whether in relationships with people or in their inner self. This is a constant search for balance that makes it possible to have a quality life and keep the effects of schizophrenia under control.

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In the following chapters, we will show how family and social experiences related to well-managed treatment make it possible to live with schizophrenia under control and to build new perspectives in life. It is possible to have realistic hope of overcoming schizophrenia and to lead a fulfilling life like anyone else.

4 Treatment

General Aspects Schizophrenia is a disease in which several biological, psychological, and social factors are involved; its treatment involves the care offered by health professionals, family members, and the participation of the person who has the disease. Schizophrenia is invariably accompanied by great suffering as it affects the person’s relationships with reality and with other people. Faced with this situation, treatments aim to build possibilities for dealing with these sufferings and rebuilding the life path, based on the person’s own capabilities. As in the initial chapters, we present here the main aspects involved in the treatment of schizophrenia. Our aim is to provide some central elements that make it possible to understand the nature of schizophrenia and serve as an instrument to promote dialogue between patients, their families, and health professionals so as to achieve a better treatment for each individual. The treatment of schizophrenia provides better results when performed by a multidisciplinary team, that is, a team composed of health professionals from different specialties (psychiatrist, psychologist, occupational therapist, nurse, and social worker) who work together in the therapeutic plan of the person with the disease. When this team treatment is not possible, understanding between the professionals who treat the individual is important. We are aware of the difficulties related to the treatment of schizophrenia in our country, whether in terms of the person’s and their family’s experiences or in terms of the functioning of treatment facilities. In this sense, we seek to present real situations that can serve to assess the real issues that each person encounters, as well as thinking of ways to overcome the situations experienced. © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 J. C. d. Assis et al., Between Reason and Illusion, Copernicus Books , https://doi.org/10.1007/978-3-031-24556-5_4

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In this chapter, two more characters and their families will be presented, with the aim of expanding our conversations, through other evolutions with schizophrenia, different from that which Gabriel presents. There are several approaches and treatment strategies, considering that this disease can have different evolutions. In all cases the treatments aim at stabilization, health maintenance, and a good quality of life. Our central focus is treatment by the mental health team. We understand that all forms of treatment are important; however, well-conducted psychiatric treatment by a mental health team is a fundamental condition for the person’s stabilization and recovery.

Another Path: The Return The experience of going through an acute psychotic episode of schizophrenia leaves deep scars on the person; it takes a lot of effort to reintegrate socially after the crisis period. There is the fear of not being accepted and the difficulty of sharing the simplest things of everyday life, such as smiling, being calm, doing things that give pleasure, sharing what you experience with friends, etc. When thinking about recovery, one usually examines the ability to reacquire sophisticated skills that allow a person to participate in the competitive world in which we live. This may or may not happen; however, thinking about what is important for the quality of life, it is essential to feel good and to know how to share life with people. Let’s see how Gabriel lives this process. After a few months of treatment, Gabriel decides to go back to studying for the university entrance exam. Now, advised by Dr. Marcelo and Fatima not to isolate himself and to rebuild a circle of friends, he enrolls in a pre-university course. This is a big step: overcoming fear and getting back together with people. The pre-university course is a very busy place, with many students in large classrooms. At first Gabriel feels inhibited as if he is less capable than the other students. However, he soon meets Luiz, an outgoing young man who talks to everyone, and friendship comes naturally. Along with Luiz, Gabriel meets several other young men and girls and discovers that he is not the only shy one in the class. He is happy with his new routine and being accepted into his new circle of friends. However, as the classes progress, Gabriel realizes that he no longer has the same agility of reasoning and memory that he had before he got sick. He is always in doubt after class as he can’t understand much of the content given in class. When he gets home, he studies a few more hours every day. The

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course periodically carries out tests that simulate the entrance exam, and Gabriel, despite his efforts, is not able to do as well as his friends. This leaves him frustrated as he has been dedicating himself a lot to his studies. In a consultation with Dr. Marcelo, he complains: “It seems that after the schizophrenia I got dumber, I try, but I think I’ll never be the same again.” The doctor realizes the young man’s anguish and frustration and tries to help him in this matter: “Gabriel, you are in a very demanding course, and you compare yourself with those who do well in the tests, but you fail to look at the large number of people who are worse than you. Schizophrenia can cause some memory and reasoning difficulties, especially in the period following the acute psychotic episode in which medications are being adjusted. You need a little patience as you should get back to your usual ability. Everything in life is achieved with hard work, and this recovery phase (convalescence) is no different. Know that you are on the right path. Try not to compare yourself with your friends, everyone is different. The important thing is that you continue on your journey.” The conversation with Dr. Marcelo, despite Gabriel agreeing with the him, did not completely get rid of the young man’s anguish. He is experiencing a situation common to all students who are going to take the test at the end of the year to enter university. What is this situation? There are few places and great demand; consequently, many of the candidates fail. This generates the anguish of wanting to be among the best in the tests that the prep course carries out as only the best will pass the entrance exam. Gabriel isn’t understanding this. The social reality that we all live is permeated by demands and competition; the current world has these characteristics. Gabriel has a hard time dealing with these conditions; he struggles to meet these requirements and is frustrated at not getting the results he demands of himself. Dr. Marcelo, a sensitive clinician, understands this situation and tries to show Gabriel that it is not helpful to compare himself with others and that the effort he is making will yield positive results over time. However, it is common for young people to hear what the doctor says but not understand the message of self-­compassion he wants to convey.

A Very Common Error Schizophrenia is a chronic illness for most sufferers and therefore needs treatment for an indefinite period. A very common mistake made by people who have diseases with these characteristics is to think that they are cured when the

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symptoms disappear, and, as a result of this judgment, to interrupt the treatment, which usually leads to the reappearance of the disease. In the case of schizophrenia, the return of symptoms, also called relapse, unfortunately causes, for most people, more harm to their functioning in life. Gabriel makes this mistake, and it’s important to know what his reasons are so we can understand what’s going on and prevent it from happening more often. Gabriel made a good recovery, but he still hasn’t realized that schizophrenia, like any disease, brings with it limitations. We live in a society that values​​ and encourages competition and individual acquisition; as we showed earlier, this posture can become a trap and make our lives very difficult. Gabriel continually compares himself with his friends and thinks he is cured; after all, he doesn’t feel persecuted anymore, he doesn’t hear voices any longer, and he went back to school and has friends. He thinks that what he went through was a bad phase and is now overcome. He associates his difficulties with studying with the effects of the drugs he takes and believes that if he stops using them, his intelligence will improve. Therefore, he stops taking the medication and does not return to consultations with Dr. Marcelo or the occupational therapy sessions with Fatima. His parents are concerned but have a hard time convincing him to follow the treatment. Gabriel argues that he is fine and that the medications affect his performance. His parents follow his efforts and also know that he has regained the will to live; this makes the situation even more complicated as they want their son to go on with his life independently. They also speak with Dr. Marcelo, who recommends that Gabriel should not stop the medication, saying that it is too risky and that he may have a relapse. The parents ask Gabriel to talk to the doctor, but he refuses. He is making a very common mistake in the history of people who have schizophrenia. Two months after that decision, Gabriel’s life begins to change again. Let’s see how this happens: he always liked literature and had been writing poems and short texts for some time. Writing is a skill that makes you feel like your friends and even better than them. However, over time, without treatment, this activity begins to dominate his mind; he begins to think that his texts are very important and that they can change the way new generations will see the world. This is already a sign that denotes the return of delusional symptoms. The voices come back too, and some of them say that he’s a great writer; others say he’s mean for not publishing what he writes. Dominated by these delusional and hallucinatory experiences, Gabriel does not show his writings to his friends for fear that they will reach the hands of important writers and that someone will steal his ideas. He feels increasingly cornered and alone.

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A common feature of schizophrenia is that the person does not realize when they are entering a new crisis. Gabriel begins to behave very differently; family members notice the change but do not know what to do. His friends also notice the changes and fail to understand why he has certain strange reactions. Even Julia, his sister, who has always talked a lot with him, is unable to approach him, and as Gabriel is not aware that what he is experiencing is a schizophrenic crisis, he does not open up to anyone. His second crisis is much more serious than the first. Unfortunately, this is a common result of the interruption of treatments and care to keep the disease under control.

The Importance of Medication Fernando S. Lacaz—PsychiatristOne of the main challenges of medicine in general is patient adherence to treatment as a whole, especially in chronic diseases, being particularly difficult in the treatment of obesity, diabetes, high blood pressure, and mental disorders such as schizophrenia. It is believed that more than half of the people affected by these diseases do not undergo treatment according to the guidance of the medical team. A consistent aspect of knowledge about schizophrenia is the fact that the use of antipsychotic medications improves acute symptoms such as delusions, hallucinations, insomnia, and behavioral disorganization. In addition, it is also known that the continuity of use is one of the main factors for the prevention of relapses. And why is it important to prevent relapses? In addition to the suffering itself of reliving the malaise of a crisis, which can disrupt personal relationships, academic and professional performance, and routine activities, the repetition of relapses can worsen and impair the evolution of the disease. The greater the number of crises, the worse the quality of life and the greater the impairment to mental functions such as memory, attention, organizational capacity, and willingness to perform routine activities. We know that up to 80% of patients who discontinue antipsychotic medication may relapse within a year. In people who take their prescribed medication regularly, the risk of relapse is significantly lower. However, it is understandable that at different stages of the disease, the patient may wish to stop the medication. But, after all, what can lead to this wish? In part, the lack of knowledge about the risks of abruptly stopping the drugs can induce discontinuation. To prevent this from happening, doctor and patient should openly talk about the consequences of not properly taking the prescribed medication. The risks must all be clarified.

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Adverse effects of antipsychotics are another cause for discontinuation of drug treatment. No medication is free from side effects, from the stomachache caused by aspirin to the drowsiness caused by some antipsychotics. Fortunately, we increasingly have access to different medications with favorable adverse effect profiles. Reporting what you are feeling to the doctor after the introduction of the medication, as well as the professional directly questioning the patient about possible symptoms, can help in choosing the most appropriate medication and with the best profile in relation to unwanted effects. One of the reasons for not wanting to use medication is frequently related to the sense of not feeling sick, which is very common in periods of crisis. One individual said to me: “Doctor, why do you insist on medicating me if I am not sick? I think it's a case of spiritism, and there's no remedy for that! But one thing is true, the last time I took this drug I felt much better!”. The notion of illness, also called insight, is an important aim of consultations and can be extremely valuable in terms of patient acceptance of medication use. I usually suggest that patients talk openly to their doctor about any wish to abandon drug treatment and that both of them first try to understand the reasons, known or not, related to this desire, and then choose the best strategy to deal with this situation, remembering that, in the case of chronic diseases, premature cessation of treatment is common and is the main factor of a worsening prognosis.

Prevention of Relapses In schizophrenia, prevention of relapses or crises is one of the main goals of treatments. One must understand its importance and make every effort to avoid it. There are at least two reasons for this: the first is that a schizophrenic crisis leads to a regression of all the work and investment of the person in treatment, changes, achievements, and understandings; second, the crisis is toxic to the brain and causes biological losses of functioning, leading to an increasingly difficult development for the person with schizophrenia. A relapse happens because the person stops taking medication and following treatment or due to stressful situations that cannot be resolved. In the crisis, due to the increase in dopamine, the person starts to perceive reality with a greater prominence. Delusions are the result of erroneous associations of events in everyday life that end up having great importance for the person, guiding the person’s life even if everyone says that what they believe is not happening. Hallucinations are altered experiences of the senses that bother the person all the time, confirming their delusions. It is an experience

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of inner disorganization that is very clear from a cognitive point of view, compromising the closest and most important activities and relationships. The medication lowers the heightened dopamine function, dampening the heightened salience the person gives to their experiences. However, psychological, or inner, resolution of crisis experiences can take a long time to occur; this depends on the person realizing that crisis experiences need to be revisited. This happens through insights built in therapeutic relationships and in the close relationships that the person has with family and friends. It is common to expect that when we take a medication, we will get better, and the problems will disappear. But with illnesses that last a long time, and this is the case with schizophrenia, the results are not immediate. A very common reasoning is that of denying the disease as the person believes in the experiences they live, does not think they are symptoms of a disorder, and then stops taking the medication. This process ends up becoming very difficult because, with each relapse, the symptoms tend to get worse, and it becomes more difficult for the person to overcome the central issues of the disease. Over time, this process can become chronic, with the symptoms ever more difficult to treat. Avoiding relapses is important to change the course of the disease. It is important to understand that the resolution of symptoms greatly depends on the personal effort to have a healthy and active daily life. In addition, understanding psychological resolution needs time to make sense, and here trusting relationships are key. The process of avoiding relapses is important so that, over significant stable periods, new understandings and healthy experiences allow insights and improve symptoms. It is also essential for the health of the brain of the person with schizophrenia, thereby preventing a degenerative process from taking place. For this reason, medications are essential, and psychosocial treatments are necessary for a healthy daily life. The brain changes that the disease brings and the way the person deals with everyday events and stimuli change the way they relate to the world, and this needs to be understood beyond the symptoms. In some situations, brain changes prevent the recovery process from allowing the individual to return to what they were before. Nevertheless, it is essential that the person and the family understand this so that they can build new possibilities from the changes that the disease has brought.

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Another Form of Care When schizophrenia relapses, a person needs more intensive care. Family members are also disoriented because everyday life and strong affective bonds lead them to relive all the difficulties they have already faced with their sick family member, intensifying a feeling of not knowing how to act in relation to the current situation. At times like these, the help of a mental health team is very important so that the suffering of all those involved can be accepted and so that the person in crisis is treated appropriately. Let’s see how this process takes place in Gabriel’s family. Gabriel doesn’t realize he’s going through a relapse. Although he previously experienced schizophrenia, the current experiences are unquestionably real to him. The arguments of his parents and siblings do not convince him that what he is experiencing are symptoms of the disease. He refuses to go to the doctor and is also unable to explain to his family everything he is going through. This process generates considerable disorientation for everyone. Paulo and Dona Marcia, Gabriel’s parents, contact Dr. Marcelo to tell him that their son’s behavior has become very different, living together has become very difficult, and he refuses to go back to treatment. The doctor explains that Gabriel is experiencing a relapse of schizophrenia and that an intervention is needed as soon as possible. He suggests that they take the young man to the hospital’s emergency room that same day and that they look for him so he can see Gabriel again. When they get home, Gabriel’s parents call him in for a chat. Having learned that the best way to deal with their son is through dialogue, not imposition, they tell him that they have talked to Dr. Marcelo about their concerns and that the doctor asked him to tell him that he would like to see him. At first Gabriel refuses as he says he is not sick. His parents say that if he is really not sick, Dr. Marcelo, who has always treated him with consideration, will only advise him. Gabriel is reluctant but ends up accepting, because deep down he knows he needs help. The consultation with Dr. Marcelo was long; he patiently talked with Gabriel, who took his texts and spoke of the things he was experiencing. The doctor called his parents and explained that he had a fixed idea that he would only be recognized for his writings after he died, and that there was a significant risk of suicide. For this reason, the procedure necessary to contain his crisis would be hospitalization. The psychiatrist explained to Gabriel what a relapse of schizophrenia is, why it happens when medication is stopped, and the importance of ensuring

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the crisis was overcome. He explained that hospitalization was necessary in order to provide better care throughout the day and avoid other risks. The hospitalization would last only the period necessary to contain the crisis he was experiencing. Gabriel was only convinced to stay in the hospital after his mother assured him that she and Julia, his sister, would often visit him. Hospitalization is another form of care; when the sick person enters into a relapse, they should not be blamed for it. Despite Gabriel withdrawing from treatments, his parents sought help from Dr. Marcelo, thanks to the relationship of trust that had been established between them. When the doctor explained the seriousness of the situation, Gabriel’s parents took what he said very seriously. They tried to convince him to go to the consultation, with arguments that finally persuaded him. And they guaranteed that Gabriel would not be alone in the hospital as they would always visit him. There are cases where the situation is more difficult as the sick person refuses to go to the doctor. In these cases, the family has to be strong and united to get the individual taken to the doctor even against their will. In Chap. 5, we offer suggestions on how to handle this type of situation.

Demystifying Hospitalization Psychiatric hospitalization is a way of providing care to people with mental disorders to control moments of crisis. It is not a punishment or an act of disrespect for the person’s rights; in contrast, it is intended to protect the person and offer full-time professional treatment and attention. Hospital admission is a difficult process in any area of medicine; in psychiatry, it is accompanied by the suffering of both the person and the family members, suffering that is part of the crisis in mental disorders. Hospitalization is recommended when the illness poses risks to the person living with schizophrenia or to others, or when, no matter how dedicated the family may be, they are unable to provide the care that the individual in crisis needs at that time. It should last only as long as necessary to contain the most intense crisis, and once the person has reached a certain stability, they should return home to continue outpatient or inpatient treatment, seeing the doctor periodically. Let us learn how this process happens in the case of our character. After the consultation, Gabriel was referred to the hospital psychiatric ward, which consisted of a living space with tables and a television, a nursing station, and rooms with accommodation for three people. He was received by Luiz, the nurse, a kind and caring person who directed him to his room and

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explained that his family members would bring his clothes and belongings later that day. Inpatient care consists of maintaining an environment of respect and good coexistence among inpatients, as well as ensuring that medications are taken at the correct times. The nursing staff provides integral care to each patient through conversations, attending to each patient’s needs and maintaining a calm environment. Once a day, the doctors come to talk to their patients, give the medication prescriptions, and talk to the nursing staff. Additionally, there are daily activities or conversation groups in which the participants talk about the problems they are facing and exchange impressions about the treatment. At first, Gabriel thought that his internment was part of a conspiracy to prevent his ideas and texts from being published. However, as the first days went by, talking to the other inpatients, he became aware that each one of them, in their own way, had problems; some also felt persecuted, others more depressed, others more agitated and confused. His mother and sister visited him every day, and his father and brother two or three times a week, which greatly contributed to his feeling loved and getting better as the days went by. With the effect of the medications, the symptoms began to diminish; Gabriel was realizing that the things he believed might actually not be happening. During hospitalization he made friends with two other people with schizophrenia, Carlos and Francisca, who, despite having symptoms similar to his, had very different ways of presenting the disease. Living with these two new friends helped him to understand the situation he was going through, which we shall describe below. Many family members are stuck in doubts about whether to hospitalize the person in a schizophrenia crisis. The main question is whether the person will be traumatized by being hospitalized against their will. We think that the consequences of not admitting the person may be worse than if they are admitted. With time and an understanding of the illness itself, the person with schizophrenia usually accepts that hospitalization was a necessary procedure, an understanding that enables them to cope with this kind of experience. We now present a description of the characteristics that a place of hospitalization should have; however, we know that not all places offer the minimum conditions for a hospitalization that preserves the patient’s dignity. Family members should always try to obtain the best treatment for the person, either by visiting the place or by looking for places of care with better conditions.

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Experience of Hospitalization J.C.A.Hospitalization is not a punishment for bad behavior; it is an intervention with the aim of providing care that the family currently lacks, both in terms of training and resources. I have been through two hospitalizations along my history of schizophrenia, and I will relate how I was cared for in one of them in 1987. I arrived at the treatment location with completely altered behavior, with beliefs that were not justified in the common reality, very different perceptions, in which everything referred to my beliefs. At the hospital I received medication and was housed in a room with four other people, clean and with space between the beds, next to a 24-hour nursing station. The bathroom was clean, as was the bathing area. Every morning and afternoon, we went to the outside area of the building where there was a sports court and balls and a snack bar. The nurses were caring but also strict, maintaining an orderly relationship between patients. There were two occasions when I had to be restrained in a straitjacket. The first occasion was at night, I went into a crisis of agitation of despair, and the nurse put me into the straitjacket, medicated me, put me to bed, and recommended that I try to sleep, which I did. The next day, early in the morning I woke up, and the nurse was next to my bed, talked to me verifying that I was better and took off the straitjacket, recommending that I try to control myself. The second time was on the sports court, I also lost control and was put in a straitjacket, taken to an infirmary, and medicated; a few hours later, finding that the lack of control had passed, they removed the straitjacket. During this hospitalization, I received 24 hours a day care, and it was a necessary period for the medications to have the expected effect and the schizophrenia crisis to diminish considerably; I was then discharged. The treatment I received in the hospital would not have been possible with my family at home. Today I am sure that it was a necessary measure because my family would not have been able to provide the care I needed and control situations that nurses are trained to do with skill and respect for the patient. Today I thank my family for having accompanied me in this difficult period and welcomed me with care and affection when I returned home.

Humanized Care: The Role of Nursing Vânia Bressan—NurseNursing, as a practice of caring for the sick, has always existed. In Brazilian psychiatry, it began its journey in the mid-nineteenth century in a hospital environment, where its role was to apply the psychiatric therapeutic measures prescribed at the time, which were based on prohibiting, watching, shouting, offending, and tying up. Thanks to the advancement of psychiatry, nursing has also been changing, producing scientific knowledge and offering more humanized care to people with mental disorders.

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Through the therapeutic bond, listening, observation, communication techniques, and physical restraint (used when necessary and prescribed), it has been contributing to the treatment of individuals suffering from mental disorders. The nurse specialized in psychiatry and mental health can coordinate therapeutic groups and provide individualized care to patients and families, using psychoeducation as the main work tool because the nurse is, in essence, a health educator. The nurse assists family members in the management of difficulties with patients; provides knowledge about psychopathology and the medication being used; provides guidance on hygiene, personal appearance, and general health care; encourages patient autonomy; provides reeducation of some dysfunctional types of behavior or daily difficulties presented by the individual, using problem-solving and cognitive-behavioral techniques; and monitors psychic signs and symptoms and side effects of medications. From the 1980s, in Brazil, nursing expanded its field of action in psychiatry to mental health outpatient clinics and Psychosocial Care Centers (CAPS) and began to take more effective action by participating in multiprofessional teams as the care for people living with mental disorders is complex and comprehensive, requiring professionals skilled in the bio, psycho, and social areas affected by the disease. In the multidisciplinary team, one of the nurse’s main functions is to be the “link” between the professionals because the nursing team stays with the patients the longest and therefore knows more about their behavior and life history, and it is of great importance to bring these data to the knowledge of all professionals in order to assist in the diagnostic elucidation and consequently in the actions to be taken, aiming at the psychosocial rehabilitation of people living with mental disorders.

When the Person Does Not Think They Are Sick One of the great difficulties for people with schizophrenia to follow treatment and to establish a path toward improvement is that they are not aware that their experiences are being affected by the illness. Such difficulty is also called lack of insight or lack of awareness of the illness. Schizophrenia does not characterize the person because the person is much larger than the illness. However, as long as the disease is not treated, the individual’s life is dominated by the symptoms, and other aspects (social, professional, leisure, etc.) are considerably affected. During hospitalization Gabriel met Francisca, who thinks she is not sick; let us now look at her situation. Francisca is being hospitalized for the fourth time in less than 2 years. She always finds explanations for the symptoms she is experiencing, the delirium and hallucinations. Even though she is a good-looking young woman, she

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takes little care of her appearance and hygiene, lives isolated, and has no friends or boyfriend. She stopped studying and had difficulties socializing with her parents and siblings. After the previous hospitalization, she spent a period taking the medication but then refused to follow the treatment. No matter how much the family insisted, she refused to continue the treatment, and this generated problems in their day-to-day relationship. This process made the symptoms increasingly intense, and Francisca worsened with each crisis. Schizophrenia presents itself to each person in a unique way. In the case of people such as Francisca, the symptoms seem so real that it is difficult to understand that what she is experiencing is linked to the disease. She suffers a lot, she feels that she is being chased and filmed and that people ridicule her, and her unstructured behavior makes her relationships difficult, feeding a vicious circle of suffering and social isolation. How can the person who does not accept that they are sick be treated? Health professionals have tried to build the understanding with Francisca that treatment will enable her to redesign her life path, but all attempts have been unsuccessful thus far. During this hospitalization, the team made the decision to use depot medication. What kind of medication is this? This type of medicine is called a long-acting antipsychotic. It is applied by intramuscular injection, and its effect lasts from 1 to 4 weeks. It can be applied during medical appointments and eliminates the need to take the pills every day. In cases such as Francisca’s, hospitalization has the purpose of controlling the crisis with oral medication, in tablets, and, after the picture is stabilized, to introduce depot medication. These medications are very useful because they facilitate adherence to treatment and reduce relapses. It should be remembered that drug treatment is essential; people who cannot adhere to oral antipsychotic medications should be treated with long-­ acting depot medications. However, medications alone cannot solve problems such as those experienced by Francisca. Faced with the difficulty of adhering to treatment in schizophrenia, a therapeutic plan that includes family counseling, occupational therapy, and psychotherapy is also very important. The results can be positive, but a continued investment in the conviviality and in the treatment is necessary, and the answers can only be seen in the medium term.

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When Medicines Do Not Work There are several options in terms of medication for schizophrenia. However, many sufferers do not respond well to them, with insufficient improvement. In these cases, the person is said to have treatment-resistant schizophrenia. This is a situation that deserves special attention since the various psychiatric treatment options need to be tried and evaluated until a treatment-resistant schizophrenia picture is configured and specific interventions are defined. This is the situation of Gabriel’s friend Carlos, whom he met during his hospitalization. Carlos has a more disorganized type of behavior, often talking to himself, sometimes responding to the voices he hears, sometimes thinking aloud. He believes that everyone knows what he thinks, and this torments him and makes it difficult to get along with people. He dresses in an unusual way, usually with layers of untidy clothes. Carlos’ story is marked by difficulties and suffering. Since the onset of schizophrenia, he has followed a path of isolation and intense experience of symptoms. Despite taking medication in the appropriate doses, Carlos’ symptoms have not greatly improved. His family members, especially his mother, are very dedicated to his care. Even so, he lives oblivious to the reality around him. He has undergone treatment with different medications and with variations in dosages; however, the improvement since the onset of the disease has been very limited. In cases such as that of Carlos, in which schizophrenia is resistant to treatment, the recommended treatment is the use of a drug called clozapine. Why is clozapine not used from the start? First, in most cases, there is a satisfactory response with other medications. Second, clozapine can cause a blood disorder called agranulocytosis. Because of this, those taking this medication must have their blood tested periodically for control. It is important to know that with proper controls, clozapine is a safe and effective medication for the treatment of treatment-resistant schizophrenia. Carlos is hospitalized so as to control a crisis and to monitor the beginning of treatment with clozapine. During the period in which Gabriel lived with him in the hospital, there was already a significant improvement in Carlos. His voices have decreased, he rarely speaks to himself, and his feeling that people know what he is thinking only appears once in a while. This has allowed him to begin to relate to people again.

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People with schizophrenia who have had at least two courses of treatment with antipsychotics in adequate doses and for a suitable period of 4–6 weeks without a satisfactory response are considered treatment-resistant and should be treated with clozapine. In the case of treatment-resistant schizophrenia, follow-up with occupational therapy and psychology, as well as family counseling, is also important. We should always keep in mind that the care and acceptance of the person with schizophrenia can result in a quality life over time. We shall follow Carlos’ story in the following chapters and will see that the most adequate medication for his case will be fundamental, but it alone does not solve the issues that schizophrenia has brought to his life. However, after the reduction of symptoms, Carlos will be able to reestablish the relationship with people step by step, and new opportunities to live better will come his way. We thus wish to remember that symptom control and the use of medication are fundamental, but it is also important to promote changes to overcome and solve problems.

After the Acute Crisis Hospitalization is a necessary procedure in many cases to control a crisis; however, controlling the crisis does not mean that the problem has been solved. After this more critical period, a new process begins, that of reorganizing life and dealing with the presence of schizophrenia, and this brings its own difficulties. It is a “new beginning” in a situation in which the person is weakened and cannot see perspectives for the future. Family support is fundamental in this phase. How does Gabriel get through this period? We must remember that when Gabriel returned to school, he discovered a legitimate vocation for literature, but when he stopped his medication, this vocation was reduced by the symptoms of schizophrenia. Hospitalization controlled these symptoms, but it also brought into Gabriel’s life a deep sense of emptiness and hopelessness about having schizophrenia. He saw the fact of having this disease as a great defeat in life, which left him without perspectives. Such difficulties are made even worse by the fact that the doses of medication have been increased during hospitalization, and Gabriel is slower in thinking and unable to express his emotions. There is a deep suffering associated with the awareness of having a chronic illness for which he cannot see a

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way out. This is a delicate moment because many people with schizophrenia cannot bear extreme suffering and attempt suicide. Gabriel, accompanied by his mother and sister, returns after a week for an appointment with Dr. Marcelo. He speaks very little, only when the doctor asks him questions. His mother and sister told him that he has not left his room and has hardly ever talked. The psychiatrist, who is very familiar with this situation, which is called postpsychotic depression, chooses his words to speak with Gabriel: “I know that what you are living through is not easy, Gabriel, but we are here to help you overcome this phase. In the next few weeks, we will decrease the dose of the medication slightly, and you will begin to feel better. Do not be discouraged, you will get through this and live well. If you do not get better in 2 weeks, we will start you on antidepressant medications. Although this phase is difficult, it will soon pass. Do not worry, you will get better. I talked to Fatima, your occupational therapist, and she would like you to return to treatment.” Dr. Marcelo’s words did not encourage Gabriel at that moment. Only later, at home, talking to his sister, was he able to get it off his chest: “Is there any way to live with this disease?” Julia, realizing her brother’s suffering, answered: “Gabriel, this is a difficult phase, but you will overcome it, we are with you in this.” Gabriel gradually feels better as the medication is reduced, and the doctor concludes that it is not necessary to introduce the antidepressant medication. Emotional support from family members is very important for the person with schizophrenia who leaves hospitalization so that they can elaborate what is being experienced and especially follow treatment and deal with the side effects of medications. It is possible to overcome this feeling of loss of meaning of life that Gabriel is living, but this overcoming is a process. We will see, in the following chapters, how it takes place in the life of our character. People usually see suffering as something negative; we understand that this moment of suffering for Gabriel is the basis for a path toward change. When he has overcome this feeling, this experience will serve as a reference for him to understand the importance of taking care of his health so as not to return to a situation already known. This is a possibility that is always open in the lives of people with schizophrenia, but it requires the quest for new ways and understandings and an alliance with trusted people such as friends, family and health professionals.

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The Importance of Healthcare Cecília Attux—Psychiatrist Larissa C. Martini—Occupational Therapist

The current concept of health is much broader than the mere absence of disease as it involves a complete state of physical, mental, and social well-being. Physical well-being involves the issues linked to the body and the biological part, mental well-being means being well with psychological issues, and social well-being is linked to the satisfaction of needs linked to social relationships. For all these needs to be met, we need to expand care in the health field. In the area of mental health, discussions related to this theme are increasingly present, mainly because people with mental illness have their physical health more affected than the general population. Studies show a high incidence of smoking in these patients, which increases the chances of cardiovascular and pulmonary diseases and some types of neoplasms. In addition, we know that four times as many people with schizophrenia are obese than the general population, which may be related to sedentarism, the symptoms of the disease itself, such as isolation, and the continuous use of medications. Obesity is related to an increase in cardiovascular diseases and diabetes and complications resulting from these diseases, hence the importance of also paying attention to these aspects. The actions of prevention and health promotion are very important for all people, but we need to take special care of people with mental disorders due to the risks already mentioned. It is important that people with mental disorders are oriented and encouraged to make changes in lifestyle, especially in relation to eating habits and physical activity. With this concern, the Pro-Health team, PROESQ, has been developing activities to guide professionals, people with schizophrenia, and family members about healthcare in general. We aim to stimulate the patient’s autonomy, guide their families, and encourage multidisciplinary actions. As a result of this initiative, we have noticed that the more people feel cared for and oriented, the greater they are motivated to make necessary changes in their lifestyle, which is fundamental to increasing self-esteem and quality of life.

What the Experts Say Gabriel and his parents were invited to attend a lecture by experts in schizophrenia. Dr. Marcelo explained that the more they understood the disease and the form of treatment, the more they could help Gabriel. In the lecture they received information related to the importance of the drug treatment and

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what to expect from it, and the subject of medication was discussed with a focus on side effects and how to get around them. Although the language was more difficult, the lecture was important for Gabriel and his parents to understand the importance of psychiatric treatment and take their doubts to talk to Dr. Marcelo, especially about the choice of medication the young man should take and its side effects. There is no medication without side effects, but that which best suits each person should be chosen, and this can be negotiated with the doctor based on the report of how the patient is feeling with the medication they are taking.

Lecture Rodrigo Affonseca BressanThe goal of treatment for schizophrenia is to control symptoms, rehabilitate the individual for their life, and prevent further psychotic episodes. Antipsychotic medications are absolutely necessary to control the acute psychotic episode and avoid new crises. Medical follow-up should be based on a good relationship with the patient and family and frequent appointments (weekly to monthly). Although medications are fundamental, they are not enough; occupational therapy and individual, group, or family psychotherapy approaches are also necessary to obtain better rehabilitation. It is currently known that the delay for the beginning of treatment and the way it is conducted in the first psychotic episode influence the evolution and prognosis of schizophrenia. Early intervention can mitigate a deteriorating evolution and even prevent new episodes of the disease; therefore, psychotic conditions are a medical emergency and should be treated as soon as possible. All approved antipsychotics have proven efficacy, and the studies conducted thus far do not show differentiated efficacy among them. Antipsychotics are divided into two classes: first generation, also called typical (Table  4.1), and second generation, or atypical (Table 4.2). The main difference between them is that second-generation drugs are less likely to trigger extrapyramidal symptoms (symptoms similar to Parkinson’s disease) with therapeutic doses. The choice of antipsychotic should be made based on the pharmacological profile of the substances (e.g., more or less sedative) and the side effects they bring. The information contained in this book aims to encourage dialogue with the doctor. It is essential not to self-medicate. The physician should always prescribe and follow the treatment. In the acute phase, a lower dose for a first psychotic episode or the dose the patient is used to is recommended. Responses occur in 2 to 4 weeks, and evaluation of antipsychotic efficacy should only be performed after this period.

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Table 4.1  First-generation antipsychotics Generic name

Brand name

Chlorpromazine

Largactil

Haloperidol

Haldol

Levomepromazine Neozine

Pericyazine

Neuleptil

Sulpiride Thioridazine Trifluoperazine Zuclopenthixol

Equilid Melleril Stelazine Clopixol

Formulations Tablets: 25 mg or 100 mg Oral drops of 40 mg/mL Liquid injection of 25 mg/mL or 100 mg/mL Tablets: 1 or 5 mg Oral drops of 2 mg/mL Liquid injection of: 5 mg/mL Tablets: 25 or 100 mg Oral drops of 40 mg/mL Liquid injection of 5 mL/25 mg Tablets: 10 mg Oral drops of 10 mg/mL Tablets: 50 or 200 mg Tablets: 10, 25, 50 and 100 mg Tablets: 2 or 5 mg Tablets: 10 or 25 mg Liquid injection of (acuphase) 50 mg/mL

Usual daily dose 50–1200 mg

5–15 mg

400–1000 mg

15–30 mg 400–1200 mg 300–1.200 mg 5–30 mg 10–75 mg

Table 4.2  Second-generation antipsychotics Generic name

Brand name

Formulations

Usual daily dose

Amisulpride Aripiprazol Asenapine Clozapine Olanzapine

Socian Aristab Saphris Leponex Zyprexa

200–900 mg 10–30 mg 10–20 mg 200–900 mg 5–20 mg

Paliperidone Quetiapine

Invega Seroquel

Risperidone

Risperdal

Ziprasidone

Geodon

Tablets: 50 or 200 mg Tablets: 10, 15, 20, and 30 mg Tablets: 5 or 10 mg Tablets: 25 or 100 mg Tablets: 2,5, 5, or 10 mg Liquid injection of 10 mg Tablets: 3, 6, or 9 mg Tablets: 25, 100 e 200 mg Tablets: 1, 2, or 3 mg Oral drops of 1 mg/mL Tablets: 40 or 80 mg Liquid injection of 20 mg/mL

3–12 mg 300–800 mg 4–8 mg 80–160 mg

In the maintenance phase after the remission of acute symptoms, the dose of antipsychotics can be slowly reduced to identify the best maintenance dose, using the patient’s symptoms as a parameter. Many have difficulty following the treatment, and there are necessary measures to be taken for this to occur and for the patient to become aware of its importance. Taking the medication correctly is the key to achieving effective symptom improvement. For patients who have difficulty taking their medications regularly, depot medications (also called “long-acting”) are a very important alternative (Table  4.3). Today, we have two second-generation long-acting

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Table 4.3  Long-acting antipsychotics Generic name

Brand name

Formulations

Usual daily dose

Fluphenazine enanthate Flupentixol

Anatensol

Haloperidol decanoate Paliperidone palmitate 1 monthly Paliperidone palmitate 3 monthly Risperidone

Haldol decanoate Invega Sustenna Invega Trinza

Liquid injection of 25 mg/ampola Liquid injection of 20, 100 mg/mL Liquid injection of: 50 mg/mL Liquid injection of 50, 75,100 e 150 mg/mL Liquid injection of 175, 263, 350 e 525 mg Liquid injection of 25 or 37, 5 mg Liquid injection of: 200 mg/mL

12, 5–50 mg every 14 days 200–400 mg every 14 days 50–200 mg every 28 days 50–150 mg every 28 days 175–525 mg every 3 months 25–50 mg every 14 days 200–400 mg every 14 or 28 days

Zuclopenthixol

Depixol

Risperdal Consta Clopixol depot

antipsychotics. These medications should be used early, especially in patients with early disease, rather than waiting for several psychotic episodes for patients to learn the need for regular medication. All medicines have (or cause) side effects, and this is also true of those for schizophrenia. However, this should not be a reason to be alarmed or to give up treatment because side effects do not occur in everyone who takes the medicine. It is important to know about them so that you can tell your doctor if they occur (Table  4.4). When an undesirable effect occurs, the recommendation is to reduce the doses or change the medication for one that does not cause as much discomfort. Some patients find it difficult to take their doses regularly because of the impact of the effects; therefore, establishing a relationship of trust between doctors and patients is essential for the right choice of medication and thus increase the chance of treatment success. In the past, it was believed that high doses of antipsychotics were necessary to contain the symptoms. Currently, the use of high doses of these drugs is no longer justified because the side effects are quite unpleasant and affect patient compliance with the treatment. Second-generation medications are better and should be used from the beginning of treatment. The availability of these medications by SUS, Sistema Único de Saúde (Brazilian Unified Health System), varies from state to state in Brazil. In cases where the first-generation medication has difficult side effects or unsatisfactory response, the second-generation medications are indicated. It is very important to know that first-generation antipsychotics: • Should be used at low doses, to avoid extrapyramidal symptoms. • Should be used at the lowest dose necessary, in antipsychotic monotherapy (a single drug).

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Table 4.4  Description of main side effects Adverse reactions Sedation or drowsiness Extrapyramidal symptoms Acute dystonia

Symptoms Increased drowsiness and tiredness during the day. Short-term habituation is common

Distressing muscle spasms and abnormal postures. The most common muscles are the head, neck, and trunk Parkinsonism Slow movements, hypokinesia, resting tremors, muscle rigidity, bradykinesia, and little or no facial expressions Acatisia Distressing subjective and objective psychomotor restlessness Tardive Potentially irreversible abnormal involuntary movements dyskinesia involving the mouth and face, such as repetitive chewing movements, lip smacking, pouting, and opening and closing of the mouth Weight gain Weight gain can increase the risk of developing metabolic syndrome, diabetes, and cardiovascular disease Elevated Gynecomastia, galactorrhea, and sexual dysfunction, and in prolactin levels women also menstrual disturbances, infertility, acne, and hirsutism

In early disease, lower doses are generally sufficient to achieve efficacy with less chance of triggering unwanted effects. Second-generation antipsychotics: • Must be used at correct doses for adequate time to assess clinical response, which is 4 to 6 weeks. For patients who do not respond to two conventional medications (refractory), there is a specific medication called clozapine (Leponex), which is especially effective in these situations. Although the treatment is slightly more complicated as it requires weekly blood tests, it is important because it can change the course of the disease and have a huge impact on the person’s life, dramatically improving symptoms. The earlier clozapine is introduced, the better the results; Carlos’ example shows this clearly. Evaluation of the efficacy of clozapine may require a longer time for clinical response, up to 6 months. Knowing more about medications and talking to one’s doctor can greatly increase the success of treatment. Both the person living with schizophrenia and the family should take an active role in this process. By monitoring the effectiveness of treatment and informing the psychiatrist of side effects, they can help the doctor work around these effects by adjusting the dose or changing medications. The patient and their family make a fundamental contribution to improving the effects of treatment and avoiding abandonment of medications, a factor that represents an important risk of relapse.

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Long-Term Monitoring Wulf Dittmar—PsychiatristWith the introduction of antipsychotics in the 1950s, it was possible for the first time to speak of an effective treatment for schizophrenia. The effect of these drugs is to attenuate psychotic symptomatology and shorten the duration of the outbreak. Unfortunately, there is no cure, but the clinical evolution of the disease is stabilized. As our knowledge about this group of medications was consolidated, their efficacy in the long term was also shown, that is, they prevented the patient from having relapses. There are many ways in which schizophrenia evolves; the most frequent is the recurrence of acute crises, also called bouts. Once this is overcome, a period of stability follows, when interaction with reality is again possible. One of the goals of the therapeutic plan is to avoid relapse because the crisis is disorganizing, and many of the conquests achieved can be lost. To prevent this from occurring, the continuous use of medication is essential. The evidence in favor of the continuous use of antipsychotic medication is incontestable: the recurrence of crises is much lower, and the successes in normalizing life are largely favorable. Facing day-to-day problems can be complicated for people with schizophrenia. They are frequently less flexible in their behavior and present less capacity to review their intentions and postures. Their conviviality with family members and social circles is restricted because they feel insecure in recognizing other people’s attitudes and intentions. Tension thus accumulates, which is perceived as discomfort both physically and emotionally. The accumulation of tension leaves the patient vulnerable to relapses and recurrences. It is believed that the continuous use of antipsychotic medication exerts a protective factor against this vicious cycle and stabilizes the progression of clinical evolution. However, as in all long-term treatments, there is a tendency to abandon medication, especially when uncomfortable side effects are perceived, such as in relation to the motor function. Antipsychotics, especially the first generation, when used in high doses produce weight gain and “loss of brightness and relief ” in the perception of events. However, the balance is largely favorable for those who use the medication because the cost of relapse is immeasurable. For an effective treatment, there is the need for a bond of trust between the patient and their clinical team. A secure base that will support the therapeutic action must be established. This, of course, will go beyond medication and attempts to improve well-being, developing strategies, alternatives, and resources for the reestablishment of a normalized life.

Medicines: New Perspectives Worldwide, there is a great investment by governmental research agencies and the pharmaceutical industry in developing new drugs. To date, all commercially available antipsychotic drugs act on the system of a neurotransmitter called dopamine (one of the elements of information transmission in the brain). These

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drugs work well in reducing so-called positive symptoms such as hallucinations and delusions and in preventing further acute episodes of the illness. However, they are less effective on so-called negative symptoms, such as isolation and difficulty socializing. There is a lot of research to discover drugs that act on other brain transmission systems such as glutamate, which may be more effective for negative symptoms. Some patients present cognitive difficulties, such as problems of concentrating, keeping information in the memory, and coordinating the planning of a task. These changes make day-to-day life difficult, even hindering medication and follow-up therapies. A number of medications are being developed with the exact purpose of improving cognitive performance in people with schizophrenia. Other research is focused on testing drugs developed to prevent brain processes that result in the chronicity of the disease, called neuroprotective drugs. If this new class of drugs comes to work, it is believed that they will be especially useful in the early stages of the disease or even in the period before the first signs, before all the symptoms of the disease manifest themselves.

Psychotherapy Marlene Apolinário—Psychologist and EducatorThe disease makes the person fragile in the face of stressful life situations. What would be experienced as normal suffering becomes unbearable for someone with schizophrenia. Thus, the demands of life—family, work, school, friends, and oneself—are so intensified that they leave the person confused and disorganized. It is therefore important to keep in mind that psychotherapy in schizophrenia is directed to treat the person, giving more comprehensive, continuous, and intensive support. The person living with schizophrenia, in the face of their suffering, needs to establish a relationship of trust and support for their symptoms and insecurities. Experiencing this relationship, in which they can be understood and helped to understand their feelings, symptoms, and sensations, becomes extremely important and gives them strength to face the disease. Psychotherapy is a form of treatment applied by psychological means, in which the necessary conditions are created for the feeling of unity between two people to appear. A welcoming environment and space for experimentation based on the relationship between therapist and patient produce changes in cognition, feelings, and behavior. The possibility of feeling supported when faced with symptoms that frighten not only the patient but also the family itself, which also become more fragile, helps to relieve and bring a feeling of security. With this feeling, it is possible for the patient to feel more sensitive and vulnerable to life-threatening events and create strategies to protect themself and reduce this vulnerability.

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Psychotherapy should be developed for the patient’s needs in relation to the disease and the characteristics of their personality, reaching their particular needs and reestablishing contact with reality. In this process, a new way of existing in the world is constructed, bringing new meanings to the values, objects, and goals that existed before the crisis, with the awareness that it is possible. The person affected by schizophrenia needs help to construct criticism in relation to the disease and to the perception of symptoms and in relation of to how to deal with them together with their way of being. The therapist has an important role, for they discover, through the trust established, what is most intimate in the patient, and, together, the patient and therapist build meanings that help the psychic reorganization of the person.

Rehabilitation Rehabilitation in schizophrenia is a process that must be thought through from the first intervention by health professionals in order to prepare the way for the person to be able to reestablish a life with quality and with the least possible interference from their symptoms. This was the procedure adopted with Gabriel from the beginning of treatment and was resumed during hospitalization. The effectiveness of rehabilitation is related to several factors, including adherence to treatment, awareness of the person and the family, and access to well-structured treatment. Let us see below how this process took place in Gabriel’s life. During hospitalization a self-care routine was established, including medication schedule, hygiene habits, moments of leisure, and socialization. These are basic conditions for the continuity of treatment after hospitalization. Upon leaving the hospital, Gabriel went through a period of great suffering related to the feeling of loss of meaning for life. This was an obstacle that could only be overcome with the help of the family and health professionals. This is a serious and difficult issue, and it takes a long time for many people with schizophrenia to learn to cope. He goes back to occupational therapy and starts psychotherapy. Occupational therapy helps Gabriel to establish projects again, to carry them out, and to elaborate his questions about life. Psychotherapy is also a space for him to elaborate his issues in the face of the new situation. These forms of treatment give support to him to establish, over the months, the maintenance doses of the medication. In the months following hospitalization, Gabriel goes, accompanied by a relative, to see a psychiatrist, to occupational therapy and to psychotherapy.

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His family tries to always include him in daily and leisure activities. In this phase, going to the treatment, taking medication, and watching a soap opera with the family, for example, are activities that require great effort from Gabriel. It is, in fact, a “new beginning.” He gradually recovers his capacities over time. Health professionals and his family encouraged him to face the challenges of this journey. Sonia, the psychologist, knows that literature is something that can help Gabriel overcome the issues related to schizophrenia and encourages him to read first more popular and simple books and then more complicated ones, accompanying this process with due care. After a year, Gabriel is able to help his mother with small household chores, cook meals, and watch television with his family in the evening in the living room, go to treatment alone, and make an effort to read. These seem to be insignificant results, but they are actually very important: establishing a minimal routine, maintaining a family relationship, and going to treatment are the basic conditions, the foundations on which Gabriel will be able, over time, to redesign his life path. The lesson that the experience of this young man teaches us is that we need to understand the time needed for changes to happen. Gabriel will not stay forever with this routine; he is doing his best, and this will open possibilities for other changes in his life. It is common for the person with schizophrenia to be distressed because they do not get the results they expect in the short term and have the impression that things will not change. The best course of action is to do as much as possible. This, by itself, will promote the path to change, as we shall see in Gabriel’s story. It is also common for the family to get used to the situation of the individual with schizophrenia as they do not realize that the results, however small as they may seem, are what enable the person to regain their inner strength. Time is the best ally when we have the patience that the path of change requires.

Recovery Schizophrenia is a disease that presents different degrees of impairment, and this condition varies from case to case. In this chapter, we have presented some aspects of the treatment of the illness. Health professionals always seek to work with what is possible for the person, establishing a therapeutic plan that aims to prevent losses and promote improvement through time. It is essential to maintain hope even in the most difficult moments because it is through the continued effort of the person and the family that

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improvements can be made. This process occurs in aspects of daily relationships such as attempting to maintain relationships based on respect and acceptance of the person, providing conditions for them to improve. It is important to understand that the person with schizophrenia retains their human qualities, and it is these that enable relationships to be established, through which growth becomes possible. Many people with schizophrenia and family members become discouraged by immediate difficulties, but it is important to keep in mind that results are built up over time, as we said earlier. Improvement is always possible, regardless of the number of acute attacks that have been experienced or the degree of impairment they have caused. We shall now give three examples: • Jorge, one of the authors of this book, months after his third crisis, controlled by a hospitalization, spent the whole day trying to read a book by Machado de Assis and took 5 months to finish reading; today, 7 years later, he has no difficulty reading. • A friend, after her hospitalization, thought of becoming a nun so as to not give work to her family; today, some years later, she is very competent at work and is married. A friend was hospitalized for approximately 2 years; today, a decade later, he takes care of his treatment alone and contributes with great lucidity and intelligence to the activities of the Brazilian Association of Families, Friends and Bearers of Schizophrenia (ABRE). These successful examples are the result of an attitude of seeking to improve what is possible every day. This does not mean that there are no difficulties and complicated situations to be overcome; they exist as they do in anyone’s life. There is still no known cure for schizophrenia, a disease considered serious, but there are treatments that allow its control. Schizophrenia is a chronic disease and requires indefinite follow-up. In many cases, such as Jorge’s, it requires a lifelong follow-up. This should not be a reason for discouragement because it is possible to improve and have a good-quality life.

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Road to Recovery Testimony of a MotherFrom the time my daughter was little, I was very close to her. I knew all her friends, I always picked her up and took her to school and to parties. I always knew about her life, problems, and desires. As the years went by, she became more and more distant. As an adult she became my harshest critic. There were even moments when her words were cruel! She became harsh and unaffectionate. Some of her new beliefs made her very rigid. Her speech became disconnected. Many years went by before we realized that this was pathological. It took us a long time to reach the diagnosis. When we started her on oral medication, I was the person responsible for giving her the medicine; I couldn’t trust anyone else with this responsibility! So I became her “executioner.” We spent a year giving her oral medication until we realized that she was spitting it up. The medicine was liquid, she would take it, show me her tongue, go to the bathroom, and spit it out, without me noticing. When she ran away from home, we took the tough decision to have her admitted to a clinic. She stayed there for a week. And so we moved on to intramuscular medication. It was a liberation! Mine, hers, and the whole family’s. Of course her behavior changed! She became very affectionate, little by little the beliefs she had held went away. We try to always be present, to be with her at all times, showing our love, affection, and support. With this I believe it was easier for her to understand that we only want her well. I firmly believe that my husband and I would not have been able to go through all of this without the help of a professional. Today my hope is that she realizes that she needs the medication to get back to a productive and happy life!

5 Stigma: How People Feel

Labels Schizophrenia and the way it manifests itself are unknown to most people. As a consequence, they label those with the disease for their different behavior, without realizing that this reaction generates suffering and isolation. Our intention in addressing stigma is to present a series of little talked about issues experienced by people and their families living with schizophrenia. “Stigma” is a word that means a negative mark placed on a person. Today, we live in a situation where people with mental disorders, particularly schizophrenia, are mobilizing in order to have their rights recognized. Unfortunately, this is a situation that cannot be solved solely with laws against discrimination. It is a deeper issue rooted in history and in the way people learn their values in society. Stigma in relation to mental disorders has a great impact on the lives of sufferers, which is why it has been widely studied and is becoming a concern of health authorities. On the one hand, it is necessary to reduce misinformation through educational programs and social movements for the defense of rights; on the other hand, the lives of people affected by stigma can improve if they know how to deal with the situations it brings. In this chapter, we continue the story of our characters: Gabriel, Carlos, and Francisca, people living with schizophrenia who experience life situations that illustrate how the many facets of stigma affect the lives of people with the illness and their families. Our approach focuses on experiences and how to deal with them. We are convinced that changes will only be made with the greater awareness of © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 J. C. d. Assis et al., Between Reason and Illusion, Copernicus Books , https://doi.org/10.1007/978-3-031-24556-5_5

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people with mental disorders and their families. Changing the attitude of society will bring greater acceptance of mental illness.

Testimonial R.V.L.It is very sad to see people labeling others as schizophrenic; they can be great people, nice, understanding, and docile. This kind of label is quite shocking, but people like to label. I read in a book that the human being is considered a universe in miniature, so how can you arrive in a universe and label this or that and say that other things just don’t count? Why not just rip the label off? It’s not needed; just look inside the bottle to see what’s inside.

We hope that with this chapter, our readers will realize that mental disorders such as schizophrenia are treatable illnesses and should be dealt with like any other physical illness. We also hope to contribute useful information to improve the quality of life for individuals and their families and to reduce suffering that can be largely avoided.

Concept Miguel R. Jorge—PsychiatristThe word “stigma” has a Greek origin and means to mark, to punctuate. The Greeks marked people’s bodies when they sought to highlight something extraordinary or bad about their moral status and thus enabled them to be easily identified and avoided. A stigma is actually a special type of relationship between an attribute of the person and a negative stereotype and is ultimately seen as something that defines the person rather than a label applied to them. Stigma is related to insufficient or inadequate knowledge (stereotypes), which leads to prejudice (negative assumptions), discrimination (rejecting behaviors), and social distancing of the stigmatized person. Studies conducted since the 1950s show that people, in general, have great ignorance of mental illness and a negative reaction toward the mentally ill, considering them “relatively dangerous, dirty, unpredictable, and worthless.” This perception ends up causing feelings of “fear, distrust, and aversion” toward the mentally ill. The process of deinstitutionalization of the mentally ill—closing psychiatric hospitals and opening community services and therapeutic residences—has unfortunately contributed to the growth of stigma as people are more exposed to contacts with severely mentally ill patients, without the necessary increase in information about their real situation. The idea that the mentally ill are violent is often spread by the media and is not supported by reality since, in most cases, the patients are more victims of violence than perpetrators of it. Thus, the stigma related to mental illness, in addition to being associated with a stereotypical view of unpredictability and violence, is also associated with the denial of human rights to people living with it and often contributes to their

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social exclusion and puts them in a disadvantageous position when seeking employment, housing, study, social security rights, and even access to treatment, in addition to producing self-stigma and low self-esteem, worsening the quality of life. In general, stigma and discrimination in relation to the mentally ill extend to family, friends, and even professionals and mental health services, with a budgetary discrimination of mental health in public health policies. Strategies to change stigmatized attitudes usually involve education (information about mental illnesses and their carriers), which does not prove lasting and does not necessarily change attitudes, contact through direct interaction with people with mental disorders, and protest, seeking to suppress stigmatized attitudes, especially in the media, the latter being the least efficient. More recently, strategies favoring the empowerment of these people have been advocated to promote their effective participation in therapeutic planning and the evaluation of mental health services.

Lack of Awareness: Where It All Begins We learn how things and people are by living in society, in the family, at school, at work, and among friends. We learn relationships through habit. What is seen as different is within the realm of the unknown. So it is with schizophrenia—imagine what it would be like to live without other people having any notion of what is going on with you! This is what happens to people with this illness. Gabriel, 1  year after his second acute schizophrenia crisis, made a great effort to maintain his health and draw up new paths for his life. His relatives now understand that schizophrenia is a disease that brings difficulties to be overcome and support him, also accepting his way of dealing with everyday things. However, unfortunately, this is not the case in the neighborhood where Gabriel lives. As he was admitted to the psychiatric ward of a hospital and continues in treatment, does not go out much, is more withdrawn and shy, and does not work or study, he is being labeled as incapable, someone not worth relating to or as weird, “less human than the other people.” Gabriel notices when people avoid him or, worse, when they treat him as if he does not notice or understand their discriminatory behavior. This makes him sad, and it is as if he had a “mark” on his forehead saying that he is different from the others. To defend himself and avoid these embarrassing situations, most of the time he stays at home in order to reduce unnecessary suffering. The only place where he is well accepted is in treatment, where he goes once a week.

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In a consultation, he brought this disappointment on his face, and the doctor tried to determine what was going on. Gabriel recounted a series of situations in which the discriminatory reactions of people hurt him a lot, saying with tears in his eyes: “Living with the disease and following the treatment I accept, but why am I treated this way?” The doctor, aware of this delicate situation, chose the right words to help him: “Gabriel, people generally only look at appearances, they cannot see much beyond themselves. These things you are telling me have a technical name, it is called stigma. When I was a kid, I was chubby and was always left out of other kids’ games on the street where I lived. I do not have a solution for the stigma that you and I experience; I try to live well with myself and not give importance to people’s ignorance. You are a good boy and you have many qualities, do not let the stigma make you forget that.” Gabriel listened carefully to what Dr. Marcelo had to say and wondered about the stigma. Is there a solution? What is the reason for the discrimination? Can something be done to avoid it? Is it possible to live with it? Will I one day be totally accepted? We hope to discuss some of these issues raised throughout this chapter. We recall that ignorance is one of the main causes of social injustices and inequalities. Most people believe that this state of affairs is the fault of politicians and rulers but are not aware that life in society takes place in everyday relationships. Information that promotes changes in everyday life, enabling a more supportive coexistence and respect for human values, can make life better. In the case of the questions Gabriel raises, we will see that, to a large extent, the answers that he, Carlos, and Francisca will find are in their hands and will be achieved through changes in attitude.

Acceptance of Limitations Schizophrenia is a disease that, in most cases, causes limitations resulting from the loss of certain abilities, such as difficulty in talking, making and keeping friends, and performing certain daily tasks. The perception of these losses generates the feeling of incapacity and a sense of inferiority. We live through many feelings and situations; we cannot classify what each thing is, but feelings of constant inferiority and low self-esteem make our limitations even greater and seem insurmountable. However, we must remember that all people have limitations; this is a human characteristic. The great challenge is to learn to deal with the limitations that are part of our life.

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Carlos, a friend Gabriel met at the hospital, has greatly improved from his resistant schizophrenia by taking clozapine. Today, he does not feel persecuted; he practically does not hear voices anymore and is taking better care of himself. He has stopped talking to himself and has improved the way he dresses, but his clothes are still slightly unusual. However, for Carlos, all the difficulties he has in everyday life are associated with schizophrenia, as if it explained everything. These are typical ways of responding to the striking experience of living with schizophrenia.  As a reminder, it is always wise to avoid generalizations and bear in mind that each person is unique. So is an individual’s path to develop more mature reasonings that will help to differenciate the dificulties that are a outcomes of the disease from those that are part of everyones’ life. Francisca, the other friend Gabriel had met during his hospitalization, has also improved considerably. Her delusions and hallucinations have practically disappeared; she has regained the natural vanity of girls her age and started to take care of her appearance. However, she has not developed a critique of the illness. In fact, she does not think she is sick and follows the treatment as a result of the firm position of her parents. In many situations, Francisca considers herself misunderstood and complains about the lack of sensitivity of others. For many people, the experiences of schizophrenia are so profound that the way they cope with its unfolding is by denying the existence of the illness. Gabriel lives a very striking existential question and knows that the treatment is necessary because he went through the experience of giving up and had a relapse. This, however, brought the awareness that the limitations make his life very difficult, and the fact that there is still no cure for schizophrenia leads him to a profound disillusionment in relation to life, in addition to the lack of perspectives. Remember that the reason for Gabriel’s hospitalization was the risk of suicide. Well, now Gabriel does not run this risk because he is being well treated and has the support of his family. However, many people with schizophrenia cannot put up with this situation of “chronic demoralization” experienced by Gabriel and see suicide as the only alternative to put an end to the suffering or to a life without projects and achievements. Unfortunately, some people do end up committing suicide. Suicide prevention is a constant concern in the treatment of schizophrenia. It happens by providing spaces for welcoming and dialogue, which help the person to elaborate and share the profound existential questions brought by the disease to their life and to better accept their limitations. Accepting that schizophrenia is a disease and that one of its consequences is limitations in daily activities can be a big problem, but it can also be

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understood and lead to the search for a satisfying way of life. The central question is how we accept our place in the world and how we find meaning to our existence. This is only possible when we look inward, without comparing ourselves to other people, that is, when we occupy ourselves with building relationships and bonds with people without letting ourselves be influenced by the superficial demands of society. In this way, we connect with the human qualities of each person with whom we live. Individual growth only comes through sharing who we truly are with people who accept us from this perspective.

Madness: A Word That Can Hurt Over the centuries, people such as Gabriel, Carlos, and Francisca have been labeled crazy and committed to asylums for the rest of their lives. Fortunately, in the last 50 years, forms of treatment have been developed that allow these people to live in the community. However, the weight of this label is still very strong in society, which still demonstrates much ignorance and misinformation. The stigma is the result of how mental disorders are viewed in their time; today, we know that mental disorders are diseases that have treatment, and we must work so that they are seen just like any other physical disease. There is still much to be done for society to treat people with mental disorders with dignity, to create awareness that these disorders are a condition as human as many others that need attention in today’s world. Labeling people as crazy is an incorrect reaction because social exclusion comes with the label. Not enough attention is given to the fact that mental disorders are a serious health problem that needs investment, similar to other health areas, since these diseases can be treated. Today, as we write this book, there are social movements all over the world working for the rights of people with mental disorders. In many places, even today, these people are treated inhumanely. An important path to be followed is the fight against stigma, and it begins by informing and educating individuals in society to change their behavior from discrimination to acceptance and tolerance because people with mental disorders deserve the same spaces as all citizens. This change alone contributes decisively to the respect for rights and humanized treatment. Now we present an example of these humanized forms of treatment, through the stories of Gabriel, Carlos, and Francisca. It is our intention to clarify that, even with the best treatment and medications, schizophrenia is a disease that requires constant care, great perseverance, and the strong

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affirmation that the disease is a human situation like so many others that people live and face. In order to better live and deal with this complex disease, a joint effort is necessary, respecting the conditions of each person, of they who are living with schizophrenia, their family, and mental health professionals. Many people who are misinformed or lack a sense of respect for others may say words or have attitudes that offend and hurt people with mental disorders. Those who experience these situations can be strengthened inwardly, both to not accept within themselves the offenses that come from people without a sense of respect for others and to forgive their ignorance. We live in a world where each individual has their own problems. When we recognize our own problems, we have the good sense to respect other people’s problems. When this does not happen, and the person labels us as crazy or uses pejorative terms, it is because they have not yet realized that life is not made of appearances and needs our understanding. Forgiveness is an attitude that protects us and does not allow negative feelings to hinder our inner well-being. There are no ready solutions, but we believe that they can always be found based on dialogue between those involved. Dialogue strengthens us even to deal with the stigma in our lives and to contribute to a society without labels. This happens to the extent to which there is acceptance of the presence of schizophrenia, without shame or being in the place of a victim. Someone once said that it is the oppressed who have in their hands the power to free both themselves and the oppressor. We are the ones who make the wind blow in our favor.

Awareness Is Difficult There is a distance between understanding a certain situation and knowing how to live with it. Knowing the path is different from following it. Living with schizophrenia in one’s own skin poses a series of difficult situations, and the path to deal with them is a constant learning process. Schizophrenia usually appears between late adolescence and early adulthood, a period when the person is defining their place in the world, and the illness marks a break in expectations and entails several losses. It is very difficult to distinguish which issues are a result of the disease and which are consequences of the situations experienced by the person. The consequences of the disease require treatment, in which medications are fundamental. The situations experienced by the person require a learning process that they must construct. Let us see how Gabriel deals with self-stigma.

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Let us remember a little of our character’s history: when schizophrenia appeared in his life, he was in his first job, which he left to study for the university exam, which he did not pass; after recovering, he took a university exam preparation course, during which he had a relapse and was hospitalized; and since the hospitalization his life has been more limited by the disease and he has made a great effort to maintain a healthy routine. When he looks back on this story, Gabriel feels diminished when he looks at the lives of his brothers and former school friends. This feeling of failure in relation to life is something he cannot control; it always appears inside him. Gabriel would like to have a life like that of everyone else, but he cannot. There is no remedy for this negative feeling about himself. Many people with schizophrenia live with it all their lives, as if every day were cloudy and gray. Gabriel always talks to Sonia, the psychologist. She knows that there is no use in making interpretations and tries to help him get to know these feelings because she sees in this process the concrete way for him to change them. Julia, his sister, often invites him for a walk even though he usually refuses. Renato, his brother, invites him to play soccer every Saturday, and he also normally refuses. His father stopped bringing work home and started watching TV with the family at night and participating in the conversations. His mother always strikes up a conversation with her son during the day even though he speaks little. Gabriel’s relatives have learned over time that this daily support is more effective than giving advice or forcing the person to do what they do not want to do. This environment is essential for the changes to take place at the right time. Changes in our life take time, and the big ones take longer. Gabriel is building the basis for his inner growth. Those who look from afar at a person with schizophrenia talking about their issues usually do not realize that they are learning and changing in their own time. In living with schizophrenia, patience is needed because positive transformations take place little by little. It must be understood that the person with schizophrenia faces difficulties and tries to cope with them. Any individual in the same situation would fall apart and not know what to do. When we see a person with schizophrenia, we usually notice the limitations or the different behavior; what we fail to notice is the inner strength they need to remain stable and live in a frequently hostile world. When we leave our prejudices and preconceived expectations aside and get to know these people, we discover that they have admirable human values.

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Discrimination and Concealment There are several forms of discrimination against people with schizophrenia based on prejudice (or previous judgments), that is, even if the person with schizophrenia does not give any reason for it—for example, they are considered to be incapable or lack intelligence, they are judged to be dangerous or unreliable, people think that they do not realize it when they are being manipulated or do not realize that other people are trying to control their actions, unpleasant jokes are made about them, and their words or actions are belittled. Faced with these situations, is it valid to hide the fact that one has schizophrenia? When should this situation be revealed and when hidden? These are difficult questions since there is no right answer or best form of behavior a priori. The best attitude varies according to the circumstances and the people to whom one talks about the illness. Some people living with schizophrenia tell everyone they know about their condition, and anyone who accepts them for any activity or relationship does so knowingly. There are others who tell no one and say that this is a private matter and no one needs to know. There is an intermediate position, that is, to open up to people with whom you feel confident and intimate but not to others with whom you have professional or superficial contact, such as the manager of your bank account, your teacher, or the doorman of the apartment building where you live. We understand that there is no rule or position that is the most correct. Discriminatory attitudes depend on people and the dynamics established in relationships, and there is no formula to predict them or to completely avoid them. It is difficult to reduce labeling, which, as we have seen, is a historical construction; it is also difficult to fight prejudice, which is an emotional response that people have toward those with mental disorders. However, it is possible to reduce discrimination in people’s behavior through information and education! Practice shows us that if the person with schizophrenia manages not to let themself be too affected by discriminatory behavior, they have already taken a big step. This is not easy or simple, but it is the most effective way. Through experience each person with schizophrenia learns in which situations and to which people it is appropriate to tell that they have the illness and to which it is not. Not allowing ourselves to be paralyzed by discriminatory behavior is only possible when, within ourselves, we can understand that many people ignore that their reactions can offend and harm others. Learning to identify which

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people understand us and are open to healthy relationships allows us to build a network of relationships in which we feel empowered and give less importance to the stigma in our lives. Fighting stigma is a fundamental need for a fairer society so that people with mental disorders have their space respected. However, in everyday life we must, in order to live well, not let prejudice and discrimination make us bitter as this prevents us from enjoying rewarding relationships with those who do not stigmatize us. Finally, having schizophrenia does not characterize who one is as a person; therefore, it is not always necessary to tell others that one has an illness. We understand that talking about the disorder can be useful on certain occasions when the other person can better understand or help us. However, we also understand that a healthy path is not that of identifying with the disease to the point of not knowing how to live without having it as a reference in all situations, that is, to try to be what one is, without the need to justify one’s actions, which is how most people live.

Difficult Social Relations The way one lives with the diagnosis and the fact of telling or not telling other people with whom one lives with schizophrenia are very important issues as they directly affect how these people are treated. Below we present some situations experienced by Gabriel, Carlos, and Francisca to better illustrate these points. A group of Julia’s classmates got together at home to do a school assignment. It was a complicated subject called trigonometry. Gabriel, seeing that they could not solve the questions despite consulting the book several times, asked them if they wanted help. Knowing Gabriel’s diagnosis, they said no, thinking it would be too difficult for him to understand. He did not get upset: he got the list of exercises, saw that it was a subject he had learned well when he took the university preparation course and solved all the exercises without even picking up the book. His attitude, by ignoring the group’s prejudice and helping them anyway, made him feel good (improved self-esteem) and changed the way his sister and her friends saw him. Carlos dresses in an unusual way, and his way of walking and behaving is somewhat unusual. Once, he was returning home from the hospital and decided to stop for lunch because his mother had told him that she could not make lunch at home. The girl who was at the door of the restaurant handing out the tickets told him that there were no tables available even though there

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were empty tables, probably because of the way he presented himself. Carlos said that he could see empty tables, and the girl turned her back and went to call the manager, who asked him to leave. A young man who was sitting nearby and witnessed the situation took action, came up to him and asked, “What’s the problem? Is the young man’s money different from the others’ here? He’s going to have lunch, otherwise you’re going to have problems!” Carlos went in, ate lunch, paid, and went home satisfied, thinking that he did not need to bow his head to people. Francisca’s cousin was graduating from university and invited her family. Her uncle asked the father not to take Francisca to the graduation for fear that she would behave inappropriately. The girl’s father said that if she did not go, he would not go either because in the same way as his brother liked his daughter who was graduating, he liked Francisca. The uncle apologized, and Francisca, who was not even aware of the argument, went to the graduation ceremony and enjoyed the party. Her behavior was no different from that of the other girls there. The situations described above are small samples of everyday situations in which stigma is present in the lives of people with schizophrenia and their families. Our experience shows that these types of events, when not faced and dealt with as they happen, undermine the self-esteem of the person with schizophrenia and their family members, often leading to a distancing from community life. This isolation becomes the only possible form of defense. These situations show that there are many ways to combat stigma when it affects us directly. However, this is not always easy as one must “keep one’s head down” and face it even if it is necessary to ask friends and acquaintances for help. It is in everyday relationships in the community that the stigma can be undone, when people realize, through events, that respect and solidarity are the most correct reactions. This awareness is built through relationships, hence the importance of not isolating and positioning oneself when stigmatizing situations present themselves.

Experiencing Stigma J.A.O.Being the carrier of a mental disease is one of the heaviest of burdens as it involves, in addition to the symptoms and problems inherent to this disorder, prejudice, also called stigma. Schizophrenia is, in a certain way, an invisible disease because it cannot be detected through exams, and the diagnosis is made by symptomatology related to cognitive loss and negative (depression) and positive (deliriums and hallucinations) symptoms.

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Personally, I can say that I am witness of the problem of what it is to have schizophrenia because I realized that many friends have moved away, and, in my family, I notice, I feel that there is something unspoken, something “hidden.” I know that they talk behind my back—that this or that is commented on even because I gained 35 kg with the medication—and many ask me and even doubt whether I am really working. The most incredible thing, for me, is the lack of acceptance of the disease by my sister, who, by the way, helped me a lot when I had my two outbreaks in the USA.  However, when I returned to Brazil in January 2000, she “washed her hands” and literally abandoned me so that my mother was my exclusive caregiver. I am very hurt by people’s incomprehensible and selfish attitude, and I do not know how to explain this behavior as I wonder why mental illnesses are more reprehensible than physical ones. In the fight against stigma, I believe in the information and education of the public, who can little by little understand the ludic universe of the disease. Films such as A Beautiful Mind, Estamira, Evidence, and Spider can, in an ethical way, show the human and dignified side of people who have the disease. In my thinking about stigma, I am optimistic that in the future, mental disorders will be better understood and taken more naturally. In this sense, I carry the flag openly, never hiding from the people I know that I have schizophrenia. It may not be the best reaction, and many fellow suffers do not do that, remaining “anonymous,” but it is the best way, for me, to fight the stigma of schizophrenia.

Insulation People with schizophrenia are often more isolated, partly because of the illness itself but also because of the difficulties that the disorder brings to daily life. It is difficult to separate these two things; however, it is possible to assess how they happen and thus to better understand the situation of many people with schizophrenia. Let us see how isolation takes place in Carlos’ life. Let us remember the history of this character. Since the appearance of schizophrenia, several attempts at treatment with different medications and dosages have been performed, without satisfactory results. Carlos has what doctors call treatment-resistant schizophrenia, and his symptoms only improved with the use of a medication specific for these cases, called clozapine. Carlos has a way of being and behaving somewhat differently from most people, and the difficulties with treatment-resistant schizophrenia, as well as his ideas and beliefs, ended up making people avoid him in the neighborhood where he lives. He went through moments and situations with the disease

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relying only on the support of his family. Currently, even though he has improved and with his schizophrenia under control, Carlos finds it difficult to make friends and take part in activities outside the home, going out only to go with his mother to the market and to treatment. The only person he talks to is Mr. Fabio, the newspaper man, who allows him to read the magazines from his newsstand. Many people with schizophrenia, such as Carlos, live in isolation, usually in their own room. We know several individuals with this profile. It is important to say that they are sensitive people and good friends, but, unfortunately, they are very lonely. People do not pay much attention to those who do not have common interests with them, and this is true for everyone, so much so that there are many people who feel lonely. The stigma contributes greatly to individuals with schizophrenia living in isolation, with few friends, because people do not realize the human qualities of these people and that they can be good friends and good company as long as each person’s way of being is respected. The family can contribute to reducing the isolation of the person with schizophrenia, as well as some forms of treatment, in the sense of stimulating them to take part in activities that provide social contact in places where they are accepted and treated with the respect that everyone deserves. Carlos’ mother commented to the principal of the neighborhood children’s school that the young man is very good with his young nephews and nieces, who like him very much, and the principal invited him to be a monitor at the school for weekend activities. He accepted the invitation and gets along very well with the children, who identify him as a kind and understanding adult. Social isolation is one of the most difficult aspects of schizophrenia to treat. However, our experience shows that when people with the illness feel accepted and welcomed, their isolation decreases, and their quality of life improves. Health professionals try to encourage people with schizophrenia not to isolate themselves; however, it takes a lot of effort on their part to change a life situation in which the disease has a great weight. We have observed that people who take this path to come out of isolation can only do so by taking one step at a time as only then do they feel more secure to take the next step. Having support to improve self-esteem helps to reduce isolation and consolidate relationships with people with whom affinities are created in a rewarding way. These are important reactions for the person with schizophrenia to have a quality life.

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Missed Opportunities Acceptance that one has schizophrenia is a difficult process, marked by loss and disillusionment. Many people do not accept and do not follow treatment. This process is marked by situations and experiences that end up constituting the self-stigma, and the person often misses good opportunities in life for fear or fear that bad experiences from the past will be repeated. Let us see how this happens with Gabriel. Paulo, Gabriel’s father, works in accounting and has many companies as clients. In a conversation with an old client, he told him about both the difficulties and the qualities of his son, including the fact that that he reads a lot and writes very well. In consideration of Paulo, the client offered an internship position for the young man in his company, with the possibility of future employment. Gabriel’s father came home to tell his son the news. He said, “Elísio, an old client of ours, has an internship position for you. Gabriel, you will be able to earn a salary while learning a trade. This is an opportunity to take a new step in your life!” Gabriel actually felt sad. He explained to his father what he thought: “Father, I am not the same as I was years ago, my thinking is slow, I am ashamed to tell people about my life. You have already noticed that I have no friends, I cannot make friends. How am I going to work in a big firm the way I am?” His father asked Gabriel to think about it, but he went to his room very saddened by what he heard from his son. Marcia, Gabriel’s mother, went to talk to him. Paulo said he did not know what else to do to help his son. She, realizing her husband’s disappointment, said, “Let us have faith, our son will find his way, maybe it is not the right time for him to start working.” Many people with schizophrenia miss out on good opportunities in life, mainly because they feel diminished or incapable. Opportunities always appear, be it a course, a job, or a trip, in short, positive things that could improve their lives. However, the experience of schizophrenia and the situations it places in one’s life, in many cases, are like gray lenses that do not allow one to see the colors of life. The situation experienced by Gabriel and his parents can generate a feeling that there is no way out of the situation in which the person with schizophrenia finds themself. It is difficult to deal with this feeling because at the moment it is happening people cannot see other perspectives. We must always remember that the future is made up of possibilities and that schizophrenia does not

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determine what our limits are; it is done by experiencing opportunities and testing how far we can go at each moment. High expectations can generate frustration, and losing expectations can lead to wasted opportunities that contribute to a better life. Although a job offer is positive, it is also very stressful and brings with it questions such as “Will I get it?”; “Am I good enough for it?”. Self-stigma makes people think they are more limited than they really are. It makes it difficult for people to see their true capabilities. It is important to always remember that, in schizophrenia, each case is unique and each situation is different from the next. It is important to always try to improve, not to be discouraged or to think that, because one has schizophrenia, all doors are closed as Gabriel does in the situation just described.

Schizophrenia and Drug Use Drugs are a serious public health problem, both licit, such as alcohol and cigarettes, and illicit, such as marijuana, cocaine, crack, ecstasy, and others. Many people with schizophrenia use drugs, which makes their lives and family life more difficult. We cannot label people as drug addicts and turn a blind eye to the problem because they need help and understanding. We shall describe Gabriel’s experience with drug use and how it affects the fact that he has schizophrenia. Gabriel, on his way back from treatment, met an old school friend, and they sat down to talk in a bar. They were drinking beer and reminiscing about old times. Gabriel, not used to drinking, soon felt the effects of the beer, a feeling of relaxation and ease in conversation. His friend introduced him to several guys who frequented that bar, and they all treated him “as if they were old friends”; this is common in bars all over the neighborhood. This first experience was often repeated. Whenever Gabriel felt sad, he would stop at the bar and meet these “friends.” They introduced him to marijuana, and Gabriel got carried away by the illusory talk that this drug is a natural herb that does no harm and everybody uses it. With the use of marijuana, Gabriel started to feel persecuted again, with feelings of guilt, and began to isolate himself from his family, staying locked in his room. His mother noticed that her son started drinking and using marijuana and remembered a lecture in which it was explained that both alcohol and cannabis aggravate the symptoms of schizophrenia and should be avoided by sufferers. She advised Gabriel to stop but also hid the situation from her

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husband, afraid of his reaction and the conflict it would create between father and son. A friend of Gabriel’s father, an old resident of the neighborhood, told him what was happening and advised him to deal tactfully with his son, saying that quarrelling would not help solve the problem. After receiving this information, Paulo had a tough talk with Marcia. The next day, he called Dr. Marcelo and explained the problem, asking for help so as not to take any actions that could worsen the situation. The doctor promptly made an appointment to see Gabriel and his parents. It was a long consultation, and Dr. Marcelo was energetic with the young man; he explained all the effects of drugs and how they affect people with schizophrenia. He proposed very strict procedures to treat his chemical dependency and made it very clear that if he did not follow them, for his own good, he would arrange for a new hospitalization. Gabriel understood that he was using marijuana to feel accepted and to relieve the feeling of being inferior or different from others. He realized that substance use was harming him, agreed to follow treatment, and moved away from drugs. However, many sufferers find it more difficult to quit these types of addictions and their lives are greatly impaired. Chemical dependency, like schizophrenia, is a disease that needs to be treated. There is a solution for it, but it takes a lot of effort, internal discipline, and adherence to treatment. In addition to being a health problem that requires treatment, drug use is also an experiential problem. It is difficult to deal with the dependence on the pleasure that drugs provide, just as it is difficult to have a different reaction to that of people you know who also use them. People usually relapse into addiction due to two factors: the offer of the drug by acquaintances and the pleasurable effect they provide. However, those who have turned away from drug use report that they did so when they realized that the problems, suffering, and losses caused by their use are more significant than the pleasure they provide, that is, that they live better without the substances. It helps a lot to understand that this is not a moral issue but rather one of mental health and quality of life.

Experience with the Use of Marijuana L.M.In the first step of my “new life,” I not only focused on changing my choices, but I also focused a lot on my thoughts from then on so that when it came time to choose the right decision, I could take the best path.

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I had a psychotic break because of the drugs I was using, often used to excess. I was living alone in the USA because I was at university, and when I started to feel the symptoms of schizophrenia, I was scared, it felt like people were watching me, talking about me, it felt like some people were reading my thoughts; it was very scary, but that was mainly when I was on THC! I truly thought these things I felt were real; then after a while I started to feel these same symptoms sober, that was when I got more scared, and thought I could never go back to “normal”! After that, I started to distance myself from people, and being isolated was a huge pain. I would advise a person who is experiencing the same symptoms to seek help from someone and tell them that they need medical attention. I was already sure that I wanted to change for a better life; I confess that in the beginning it was very difficult and painful. As time went by, I got closer to people who made me feel good to be on the side, and my thoughts stopped drifting. In addition, with the help of professionals, I was able to quickly improve. I was making my plans with the new wisdom, to live the best way possible.

Facing Stigma Living with schizophrenia in one’s own life, as we have seen, is a very big change that leaves deep marks. The stigma exists. It excludes, hurts, and reduces the chances of a dignified life. Faced with this reality, people with schizophrenia and their families, in order to live well, have to seek in their daily lives and in the community spaces where they are able to participate and be accepted. This only happens when we are open to learn and grow and when we do not accept the label of victims which other people may want to put on us. Carlos goes to treatment, but justifying his difficulties by schizophrenia is the way he has found to have a place in the world. This is neither right nor wrong. In addition to spending hours at Fabio’s newsstand, chatting, and looking at magazines, he also plays dominoes and cards with acquaintances in the park next to his house. On weekends, he helps out as a volunteer in the recreational activities of the neighborhood children’s school. At home, he enjoys watching movies and TV series. This is the way he finds to live well. Things can always get better, but this will only happen on the basis of everyday experiences. Francisca goes to the treatment because her parents make it clear that it is for her own good. She does not think she has a disease, but she has stopped fighting with relatives and neighbors to convince them of her certainties; she likes to choose the clothes she will wear every day and asks her mother and

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sister for their opinion. Whenever she can, she goes to the mall near her house, alone or with her sister, to see what’s new. Once a week she catches the bus to the neighborhood cultural center and takes a mosaic course that lasts the whole afternoon. At home, she likes to listen to music and watch singers on TV shows. Gabriel found a path to follow through a conversation with Mr. Agostinho, the neighborhood carpenter, who has known him since he was a child. He got an apprenticeship with a small starting salary and now goes every day to the carpentry shop, where he helps make furniture, an activity that requires discipline and diligence. He enjoys the work, especially the smell of the wood and the conversations with Mr. Agostinho. When he gets home, he always tells his parents and siblings how his day went. Sometimes he goes out with Julia, usually to the movies. When he is not too tired, he goes with his brother to play soccer on Saturdays. He rigorously follows the treatment because he has become aware that this is necessary to keep the schizophrenia under control. We can see that each of our characters, Carlos, Francisca, and Gabriel, has found ways to have a productive and quality life. They have found spaces in the community where schizophrenia does not carry the weight of stigma and their qualities and way of being are appreciated and respected. Being accepted is a process to be worked on, a construction that is consolidated in relationships through the possibilities they offer. This is a learning process that is valid for anyone, especially for those who have schizophrenia. To be fully accepted is an ideal condition; no one is. We understand that the best way to deal with the stigma of schizophrenia in everyday life is not to let it paralyze us in the face of the possibilities that life offers. To do this, it helps a lot not to compare ourselves to others and to take care of relationships in order to be accepted and to accept other people.

Two Aspects of Stigma In this chapter of the book, we have sought to address the difficulties that stigma brings to the lives of people with schizophrenia and their families, but we have also tried to show that it is in the face of the practical challenges of everyday life that solutions are possible for a quality life. Social movements to combat the stigma of mental disorders are very important, especially to encourage a culture of respect and acceptance in society and to highlight the importance of investing in healthcare treatment that respects the dignity and rights of those affected and of mental health professionals.

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However, it is very important to be clear that we should both support these movements and make sure that our daily lives can be good. They are two different things and should not be confused because being an activist in social movements does not solve the problems we experience at home. Similarly, staying indoors alienated from what affects us in society and strips us of our identity as citizens who have rights to be respected. One should fight battles when one has the possibility of victory because fighting without knowing why only makes us more bitter. For example, Jorge, one of the authors of this book, lived many years with alcohol addiction but became aware that there are more important values, such as living well with his brother and three sisters and nephews, and quit the addiction. Similarly, after his last crisis with schizophrenia, Jorge learned that treatment is important not only to control the disease but also to be able to live well with family and friends, avoiding situations that create problems and suffering. Today, he actively participates in the Brazilian Association of Families, Friends and People with Schizophrenia (ABRE) as he believes in a society with less stigma. We know the difficulties that schizophrenia brings to the lives of people and their families, and, given this, we have chosen situations based on real stories that can help our readers think about how to build a life with quality throughout time with realistic hope. We live in a competitive society, and it is very easy to confuse our personal qualities with the standards imposed by it. Through the stories of Gabriel, Carlos, and Francisca, we seek to show that an important understanding is that we are valued for who we are in our daily lives, not for appearances. We must remember that there are always ways to deal with the situations presented by schizophrenia. Dialogue helps a lot, and talking to people who respect us and know how to listen and think about what we talk about is fundamental for the personal growth needed to deal with situations.

6 Family Interaction

Family In this chapter, we will address the theme of family coexistence, showing how the person with schizophrenia and their family members may build positive ways of coexistence. Our aim is that this chapter will contribute to thought and dialogue between family members, with the intention of promoting change where needed, improving relationships and dispelling misunderstandings. The path we have chosen to achieve this purpose is based on our dialogue during recent years with many people with schizophrenia and their families, listening and talking about their everyday doubts and difficulties. Most family approaches to schizophrenia focus on guiding family members in dealing with the person with the illness. Some of these approaches assume that the person with schizophrenia needs to be tutored or cared for and will always occupy the place of a sick person in the home. We understand that these approaches help in some ways, but they can also make acceptance of the person with schizophrenia more difficult, precisely by those who truly love them. Our way of seeing schizophrenia and the family is based on the understanding that the disease does not characterize their own subject and that they, like any other person, have their way of being, desires, qualities, and defects. There are situations in which the individual with schizophrenia needs both to receive care and to share life with the family. Many people with the illness are exiled within their own home. This is a situation that can be changed.

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 J. C. d. Assis et al., Between Reason and Illusion, Copernicus Books , https://doi.org/10.1007/978-3-031-24556-5_6

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Throughout this chapter, we will work with the concept of overcoming. Schizophrenia is a disease that affects several areas of the person’s functioning, makes relationships difficult, and disorientates other family members. Overcoming is a process of learning from situations and living together that allows one to accept the limitations and maximize the potentialities of each family member, as well as helping to overcome the practical challenges of daily life in the construction of projects for the future. From this perspective, the person with schizophrenia has much to gain and grow in family life. We will try to present the theme of family coexistence through situations experienced by the characters described. We often think we are the only ones who go through difficult situations, but our experience shows that most of the time we can grow a lot by sharing what we experience. We hope to help you, our reader, get new ideas to improve the quality of life in your family.

The Questions of Each Person When one family member becomes ill with schizophrenia, the others become disoriented as they have to deal with completely new difficulties and demands that are marked by much stress and confusion and lack of knowledge of how to cope. It is important to understand both the problem of the person with schizophrenia and that of each family member because the difficulties and suffering faced by family members influence each other’s well-being and affect the life of the person with schizophrenia. Let us look at some examples of these issues in the family of Gabriel, who has managed to set out on the path of coping. When Gabriel got sick, his father started working more and bringing work home; being busy all the time was the best way he found to deal with new, confusing, and contradictory feelings such as guilt, the impression that the problem does not exist (denial), hopelessness, and sadness. It took him a long time to realize that the best thing for his son and his family was his company, and then he started to be more present in the family routine. Gabriel’s mother clung to religion and the care of her son, treating him as if he were still a young boy. In church groups she learned that faith is important as long as it is edifying through daily actions. Her maternal sensitivity allowed her to realize with time that her son has a disease, and her role as a mother is to encourage him to continue with his life and be aware of his positive qualities.

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Parents deal with difficult feelings such as being responsible and sometimes guilty for the situation, trying to see “where they went wrong” in raising their child. Schizophrenia has a very strong biological factor; looking for mistakes in the past does not help but rather increases the tension in relationships. Renato, Gabriel’s elder brother, thought his brother was “problematic” and responsible for the frequent arguments between them. It took him a long time to understand what Gabriel was going through with the disease and to become aware of his suffering. He finally managed to put himself in his brother’s shoes and become more aware of Gabriel’s problems. This perception brought fears and doubts about his own mental health but also helped him avoid arguments with Gabriel and facilitated the approximation of both, which occurred, for example, by invitations to do enjoyable things together, such as going to soccer games and playing soccer on the weekends. Julia always accepted her brother, even knowing that his ideas did not correspond to reality and that his behavior was unusual. She tried to always help him even if only by talking to him. This attitude gave her inner tranquility to study and have friends to maintain a healthy life. Gabriel went through very tough situations that deeply marked his life. Constant treatment and care from health professionals were needed so that, over the years, he was able to redesign a daily life which made sense again. In this process, the learning of his family so that together they could strengthen themselves to overcome adversities was very important. Overcoming the issues that schizophrenia brings to the person and their family members is the result of a process of change in the way in which daily life is understood and lived. The past and what could have been different should not be dwelt on; the most productive attitude is to try to identify current difficulties and seek help to overcome them. This is true both for the person with schizophrenia and family members. We understand that changes occur as a result of attempts to have a successful life together and a good quality of life. Overcoming is a learning process experienced over time which is based on the understanding of experiences and changes. This process can be initiated by the desire to live better as this moment is always a good time to undertake such a project. In the following pages, let us look at some of the difficulties on the path to overcoming schizophrenia and how to overcome them.

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What Is the Magic Formula? A common attitude all of us have when faced with a serious problem is to wish there was a solution that would make it go away. We tend to look for a “magic formula.” In the case of schizophrenia, many family members believe that they will manage the problem by themselves; when this does not happen, they start to believe that the doctor will solve the issue and that there is a medicine that will make their ill family member’s problems disappear. There is an important understanding that can replace this attitude of looking for a “ready-made solution.” It concerns the fact that the person with schizophrenia tends to develop a way of functioning and reacting that is different from what people usually expect. The attitudes and position that family members agree are the most appropriate for dealing with the individual with schizophrenia frequently fail to work. Understanding this is fundamental to being able to build solutions together with the sick person. When Gabriel and his family talked to the psychiatrist, they understood what was happening and took home the medication; it seemed they had found a solution. However, at the very beginning, Gabriel refused to take the medicines as a result of delusional ideas that they were poisoned. His parents tried to get him to take them, but he would not. It took Julia’s skill to discover Gabriel’s motives, and, together with him, change his delirious idea to get him to take the medicines. After he started following the treatment, the problems decreased but did not disappear; the family members also needed to seek help to understand the situation and become aware of the issues of each one, thereby starting a path of change. This allowed solutions to be developed based on everyday issues, especially in understanding the limitations that the disease brought to Gabriel and how to help him deal with and overcome, in his own time, his difficulties. When up against schizophrenia, there is no “magic formula.” The doctor does not have that “formula.” What does exist is a series of resources and types of medications that can help the person achieve stability. Each family needs to build solutions by dealing with the practical issues which are present. Health professionals are important allies, and it is always worthwhile to talk to them about what is going on with the person and the family. Solutions take shape as each of those involved can establish communication channels in a real social network that provides support to establish a routine that is not centered on the disease, where there is, for example, room for leisure and activities in the community. It is very helpful to welcome and

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understand the issues that the person with schizophrenia faces, seeking to reduce isolation and, as far as possible, to establish a welcoming relationship. The attitude of believing that there is a “magic formula” that will solve the issues imposed by the illness on the person and their family is a result of a very common way of solving other everyday problems, but it does not work with schizophrenia. We know many people living with schizophrenia and family members who spend much time and effort trying to find a ready-made solution. A solution exists, but it has to be built, and each person does so in their own way, according to their past history and situation. Gabriel’s family found their way to deal with schizophrenia, and the families of Carlos and Francisca found others. Now we shall see examples that illustrate this understanding that we are proposing.

An Acute Schizophrenic Crisis Disorients Everyone The crisis period in schizophrenia can destabilize the whole family and generate situations of conflict, which in turn helps to destabilize family relationships for a long time. There are no recipes for how to deal with crisis situations in schizophrenia, but there are several tips that are very helpful in dealing with people with these conditions. Let us see how Carlos’ family, which has had several crisis moments, dealt with his first crisis. We must remember that, in moments of crisis, people with schizophrenia often lose control because they are seeing reality in a very different and threatening way. Carlos heard voices that threatened him and thought that everything that happened around him was related to him. What for the family members were ordinary events for Carlos had a special meaning: they were manifestations connected to his experiences. In the first crisis family members did not know how to deal with Carlos for several days, and the situation only got worse. His mother became emotionally destabilized and had frequent crying crises. His brother did not know how to act and tried to stay away from Carlos in that situation. His father thought that if he treated him strictly, he would get out of that situation, but his behavior became harsher and ended up worsening the young man’s condition. A crucial moment was when Carlos was in front of the television on and felt that the characters were talking about him; in a gesture of desperation, he threw the television down hard onto the floor. His father and elder brother tried to hold him back and were punched. Carlos, feeling threatened,

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aimlessly went out into the street. The father called a neighbor for help and drove around the neighborhood looking for his son for several hours until he found him walking alone. He tried to run away from his father, and a police car had to be called to help him as he was very agitated and frightened. Carlos was taken to the psychiatric emergency room, where he was referred for hospitalization. Unfortunately, situations such as this happen in many families, mainly due to a lack of knowledge and guidance to deal with manifestations that can occur in a schizophrenia crisis. It is very painful for everyone in the family when the person who has suffered the attack needs to be hospitalized and is disorientated and frightened. It is necessary to understand that the person in a schizophrenia crisis has very particular perceptions (hallucinations) and very disorienting and frightening thoughts that do not correspond to reality (delusions). One must keep in mind that schizophrenia is treatable and manageable and that there are many ways to prevent or treat crises early on, avoiding extreme situations. Careful psychiatric follow-up can identify the crisis at the beginning and propose ways of coping. For this reason, it is a protective attitude to report to the psychiatrist any change perceived by the person or their family and to be open to establish a strategy with the doctor to deal with the situation. This care is part of the treatment. Below are some suggestions on how to face a crisis situation based on the experience of many family members who were heard and consulted in order to write this book.

Addressing a Time of Crisis As we have seen, a schizophrenia crisis can be very difficult for the whole family, but there are a number of measures that can be taken in order to minimize the suffering it causes. During Carlos’ first hospitalization, his family members were oriented about the main aspects of schizophrenia. They understood that it is a disease that alters the functioning of the brain, and therefore, treatment with medication is fundamental. Stopping medication is the main cause of acute crises. Although medication is necessary, it alone is not enough to treat people with schizophrenia. A harmonious family life is also fundamental. Let us see how Carlos’ family has learned to deal with other crisis moments. Carlos’ relatives have learned to keep calm when he goes into crisis, not to get involved in his state, and to neither agree nor disagree with what he is saying. They have also learned not to impose attitudes and behavior that he is

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visibly unable to understand and even less able to respond to. When he gets out of control, they avoid answering back, try not to shout, and, as far as possible, speak in a low voice and calmly. They now know that they can seek help from health professionals if needed, even the city ambulance service. They learned, in this situation, not to criticize him, not to threaten him, or not try to hold him, because he can react by being scared and frightened. His parents try to do what he asks as long as it is not dangerous, which helps their relationship. When Carlos is in an acute crisis, the family members try to take turns so that there are always two people with him so that if it is necessary to ask for help from health professionals, one can do so while the other stays with Carlos. With these measures, Carlos, even in crisis with delirium and hallucinations, does not feel frontally threatened in his home. This helps him to avoid situations of aggressiveness, both physical and verbal, and, when they happen, they can be controlled without serious consequences. There are cases of schizophrenia in which aggressiveness is an important element and needs special attention, but it is not the rule for most of them. Given this situation, Carlos’ parents talked to the psychiatrist, complaining that they could not see a solution for their son’s situation since he took the medications regularly but had frequent crises. The psychiatrist explained that he was following the correct path in treating the young man and that his case was characterized as “treatment-resistant schizophrenia.” The doctor proposed the young man’s hospitalization for the minimum period necessary to begin treatment with a specific medication, clozapine. Carlos improved with the new treatment. However, the understanding, support, and care of the family were fundamental. We remember that we can always try to improve the situation experienced, and we cannot lose hope in the face of very difficult situations such as the crises of schizophrenia. We must dialogue with health professionals to together find the best ways. This is what Carlos’ family did. His family have learned the importance of unity in dealing with schizophrenia. Carlos has the disease, but it affects everyone. Each person has learned how to contribute to making him feel welcome in their home. Knowing that the family is committed to dealing with the disease helps a lot and comforts the person with schizophrenia even if they do not know how to express it. This welcome is a factor that greatly aids recovery.

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When Treatment Is Refused Many people with schizophrenia refuse to follow treatment and use many arguments to support this reaction. It must be understood that most of the reasons for this denial are related to the symptoms of the illness. Addressing this situation in the family environment is a challenge that requires patience, negotiation, and a dose of authority so that the person with schizophrenia can break out of the trap set by the illness itself. The family needs to be clear that treatment is a necessary condition for the person with schizophrenia to improve. In this sense, they need to help the person to understand this need as the person frequently fails to understand the need for treatment, and the family has to face this impasse. Convincing an adult person to do what they do not want to do is a difficult situation. Many family members hide the medications in food, and the person ingests them without knowing. We believe that this is not the best solution as it may give the person the impression of having improved without the need for medication. The path of convincing and negotiation, even though it is more difficult, ends up being the most effective. Francisca, Gabriel’s friend, does not think she has a disease. The family could not convince her to follow the treatment, which generated serious relationship problems, mainly because she defied her father’s authority. After the third hospitalization, her father warned her that if she got worse, she would be hospitalized again and that he did not want that so she needed to take care of herself. She did not take her medication and relapsed. Her father explained that he was taking her to be hospitalized for her own good, but Francisca thought this was arbitrary on her father’s part. However, he came to visit her in hospital every day, and she could understand that he did indeed care about her and was suffering with the situation. This perception led Francisca to accept going with her father periodically to the psychiatrist’s appointments and to take the injection of the depot medication. After some time, the visits to the psychiatrist and the injection became routine, and the wear and tear decreased considerably. Francisca’s case represents an extreme situation, which is not uncommon in schizophrenia. Knowing how to establish limits through relationships, making it clear that certain behavior is not accepted, is fundamental for anyone to have references of what they can and cannot do in relationships. This attitude is also valid and important in relationships with people who have schizophrenia. Showing what is considered right by example helps a great deal in convincing, negotiating, and even accepting treatment. It is very important to

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accompany the person with schizophrenia to appointments and to reaffirm the attitudes one has in everyday life, giving the physician the opportunity to intervene in the real issues one has to cope with at home. When the person does not want to be treated, the family needs to act firmly, always trying to avoid confrontational situations. The person’s attitude of denial needs to be understood as the only way they can deal with the disease, and the family can offer other possibilities. When the person understands that the treatment brings a better life with less suffering, it opens space for the treatment to acquire the sense of reconstruction of projects for the future. It is up to the family and health professionals to facilitate this understanding. The improvement with the treatments ends up being perceived by the person with schizophrenia; even if they do not think they have a disease, they may agree to take the medication because of the results they perceive in their condition and family relationships. These relationships are the references of reality that the person with schizophrenia has, hence the importance of each family member to contribute to a harmonious and structured daily life for the person with schizophrenia.

Preventing Relapses Schizophrenia is a disease that requires constant care. Even when symptoms improve or seem to have disappeared, there is always the risk of relapse and the reappearance of symptoms. The family plays a very important role in this care and in preventing relapse. We shall now present some examples of this role. Many people with schizophrenia stop taking their medication when they feel better, and this is a major cause of relapse. Family members play an important role in monitoring medication intake. Gabriel takes his medication alone every night; however, they are kept on a piece of furniture in the living room, and whenever he forgets someone reminds him; sometimes family members take him the medication, even if he is already asleep. In Carlos’ case, his mother gives him the medication to take every day. Francisca needs to go to the psychiatrist accompanied by a family member to take the long-acting medication. Another fundamental aspect is that the family environment is very important for everyone’s well-being, especially for people with schizophrenia. A harmonious environment is important to prevent relapses and avoid stressful situations such as arguments and demands for tasks and responsibilities that

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are beyond the person’s capacity. In addition, this environment generates great support for the person to feel integrated into the family environment. We know that it is not an easy task, and it is necessary that everyone makes an effort to take care of the family routine. Family members can help prevent relapse if they observe certain signs such as changes in the person’s behavior—for example, insomnia, irritability, loss of interest in activities they usually perform, different or strange ideas, and changes that only those who live with the person on a daily basis can notice. This is the time to see a psychiatrist for an evaluation because it is often possible to avoid a relapse by adjusting the medication or managing a stressful situation. In the case of Gabriel, Carlos, and Francisca, their family learned over time to live with their peculiarities so that they felt increasingly loved and considered by them. This helped greatly in dealing with the issues imposed by the disease. Sometimes their habits bother them, and their conversations are not pleasant or are repetitive, but the important thing is that they can be accepted as they are. It also helps to prevent relapses if the family encourages the person with schizophrenia to have realistic projects through which they feel productive. Gabriel found a job as an apprentice carpenter with Mr. Agostinho, Carlos as a weekend monitor at the neighborhood children’s school, and Francisca as a mosaic artist at the cultural center. Each person with schizophrenia can know which projects are within their capabilities to the extent that they perform them without overburdening or suffering from for long periods. By completing one project, the person feels more prepared to go a step further with another, bolder project. The important thing is not to give in to illness. We know that family relationships are not always harmonious. Many families coexist poorly, with serious relationship difficulties and other problems both prior to and independent of schizophrenia. We also know that the person with schizophrenia often behaves in a way that makes it difficult for family members to come together or which generates conflict. Preventing relapses requires the family to exercise tolerance and dialogue whenever possible. In many cases it is necessary to review and address previous problems to enable a healthier relationship. This requires family members to be willing and open to address everyone’s problems. The following are some habits that contribute to a supportive family environment for the person with schizophrenia and all family members.

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Creating a Welcoming Environment An important understanding is that schizophrenia is not the only cause of difficulties in family life; there are also certain individual attitudes that can generate conflicts. A nurturing environment is based on an emotional relationship between family members marked by understanding and trust. It is a goal to be achieved over time through changes and overcoming problems. Each family can find its own ways to deal with daily difficulties and create a welcoming environment. We will present some elements that greatly contribute to this process. Empathy is a very important quality. Julia, Gabriel’s sister, has this innate trait so she has always been able to listen and understand her brother, even in the worst moments. In order to empathize, it is necessary to put aside feelings and possible sorrows and understand the other person’s feelings, which are then reciprocated. This quality can be acquired, and this is what happened with Renato, Gabriel’s brother, who changed from a position of antipathy to finding new ways to continue being friends with his brother. The parents of Carlos and Gabriel parents learned to be less authoritarian and give more counseling. Francisca’s father found a way to be firm without being harsh. In all of these examples, people were able to turn their experiences of suffering into positive qualities. Empathy opens up spaces to establish a common “territory” in which people can agree. This happens first with small things and then with bigger issues. Francisca does not think she has an illness but agrees to go to the psychiatrist and take medication there. This is only possible because through a series of everyday experiences she has been building her space in the relationship with her parents and sister, and today she is sure that they want the best for her and agrees to the treatment even though she is not convinced that she needs it. We agree with people we trust and not necessarily with those we think are right. A welcoming environment is built by the habit of conversation. Conversation is the practice of empathy and common ground. It is necessary to know how to listen actively in order to understand the other person, to ask in order to understand the other person’s reasons, and to contribute to the development of the subject. There are times when we seek a conversation, and it is good to be welcomed, just as at other times we are sought out, and welcoming helps a lot. Cultivating these habits is essential for people with schizophrenia to feel welcome in the family environment and for the family to avoid placing the

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illness at the center of the issues of family life. These habits help overcome problems without making them larger than they are. Creating a welcoming family environment is the result of learning from everyday life, which starts with good will and patience so that results appear. We remember that the examples of our characters required time for each family member to mature and a permanent search for problem solving. This is a fundamental understanding, which justifies why there is no “magic formula.” We understand that the best way to face family issues and those of schizophrenia is to always persist with welcoming as the basis for dealing with the difficulties that each person’s life poses. Each person can choose the best ways to make this path.

Family Relations Elaine Vieira—Social Worker and Family Therapist If thinking about family relationships in contexts of health and normality is not an easy task, to look at families with a person with a severe mental disorder such as schizophrenia shows us, in addition to this complexity, how relationships can become fragile while living with the disease. In general, when a young individual presents significant changes in their behavior, family members realize that there is something wrong and begin to try to understand and solve the problem. During this journey it is common that they seek a number of health services or medical departments and receive different information such as “your child had a psychotic attack, has schizophrenia, the treatment is long, they must not stop taking the medication....” Such information often raises more doubts, and family members accumulate, throughout this search, feelings of perplexity, sadness, helplessness, shame, and guilt. These circumstances can cause or increase the isolation of the person with respect to their family, relatives, friends, and social networks. Over time, family members learn to face the problem, the acute crises, the improvements, and the relapses that are part of the course of the disease. This experience of such a fragile balance and so much suffering usually results in an overload that can lead the caregiver to become ill. Facing the need for the restructuring and readaptation of day-to-day family life and the difficulties of family members in relation to the treatment and recognition of the disease, it may be useful to seek specific support to develop resources to deal with the situation in the most appropriate and healthy way. Family care usually has the following aims: welcoming, information, guidance, sharing personal situations, and the construction of new possibilities to face the situation experienced.

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Finding Resources in the Community When family members face difficulties living with a member with schizophrenia, they may withdraw or isolate themselves from community life, stopping going to public places and avoiding social events. This is due to both the stigma of the disease and to daily issues that change the family’s own dynamics. However, for a quality life, it is essential to remove issues related to the disease from the center of one’s concerns and actively seek resources in the community that may reduce this isolation. A community resource that can be put to good use is the treatment facility, whether it is for discussing family issues, holding lectures, or receiving mutual aid groups. There are other community resources that can be accessed by the family. Each member can find places and events in the city that are good for them. Gabriel, who enjoys writing, was encouraged by his occupational therapist to attend the writing workshop offered at the city library, which has greatly helped his recovery process. His parents attend church, but they have also taken walks in the park and occasionally go to the movies. Francisca goes once a week to the cultural center to take a mosaic course. In addition to the friendships she has made in the group and the pleasant hours she spends there, she visits exhibitions and follows the city’s cultural program. She even invites her sister to some of them. Carlos learned to play cards and dominoes well at the hospital and made friends with the people who play in the square near his home. This is a very enjoyable activity for him, and he feels comfortable with his friends in the square. On weekends he is a monitor in the recreational activities of the children’s school in his neighborhood. He has a way with children and is respected by them, which greatly improves his self-esteem. Carlos’ mother is part of a group of women who get together to crochet and chat on Saturdays at a handicraft store in their neighborhood. She produces very beautiful pieces which she gives as gifts to relatives and friends. These are some examples. The city always has many resources for a healthy and enjoyable life. It is important for families to understand that it is not healthy to always put the problems of schizophrenia first. In order to cope well with the illness, it is necessary to seek activities that are good for each family member. Getting to know what the city can offer and trying to get out of the house to integrate with other people and activities can be very helpful in finding balance and well-being.

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For many people with schizophrenia, the place of treatment is the only place where they can socialize. It is usually the place where they feel welcome and treated with respect. However, this should not be the ultimate goal of any therapeutic approach. Resuming activities in the community can be a slow process for many, and activities with family go a long way to helping people with schizophrenia find spaces in the city over time to move around with ease and confidence. One of the difficult symptoms to overcome in schizophrenia is social isolation, which often also affects other family members. An important step in the recovery process is social reintegration, which occurs by finding community resources that are good for each person. Engaging or participating in social activities fosters friendship and revitalizes the skills a person has that have been obscured by the disease, bringing new vigor and opportunities to their life. Family members also benefit from taking advantage of the resources of the community, developing a more pleasant life and a better disposition to deal with everyday issues and problems.

Encouraging Autonomy One way to help the person with schizophrenia feel integrated into the family environment is to encourage their autonomy in the daily tasks with which they are able to deal efficiently. This can greatly help the person’s ability to face new situations. Let us look at an example experienced by Gabriel. Gabriel’s father asked him to go to the bank and pay a bill, leaving the bank card and password with him. The young man had never used the bank’s ATM to pay bills and spent the day worrying, certain that he would make a mistake in the task his father had assigned him and feeling incompetent. When his father came home from work, he asked Gabriel if he had paid the bill. He justified himself by saying that he had not done so for fear of making a mistake. His father was not angry but spoke to him seriously, saying, “Son, paying this bill was your responsibility, we cannot run away from our responsibilities. Tomorrow your mother will go to the bank with you and teach you how to pay the bill.” The next day, Gabriel and his mother went to the bank. He paid close attention to the procedures for paying the bill. In addition, he could observe that many people ask the bank clerk for help in using the ATMs. He realized that his fear of making a mistake was exaggerated. When his father arrived in the evening, Gabriel was satisfied that he was now able to pay his bills at the bank.

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From that day on, Gabriel started paying all the household bills at the bank, even making deposits, obtaining bank statements, and withdrawing money when his mother asks him. He enjoys performing these tasks mainly because they represent the trust his father has in him to take care of an important activity of family life. Encouraging the autonomy of the person with schizophrenia is very important to maintain self-esteem. Some activities may require monitoring for a certain period of time and may be gradually delegated to the person in recognition of their ability. The activities chosen depend very much on each person’s conditions and abilities, but it is always possible to find those which are most appropriate for the moment. The example used may be considered simple, but it is very significant for any task. Cecília, one of the authors of this book, accompanied, together with Jorge, the coordination of a group of activities of the Brazilian Association of Family Members, Friends and Bearers of Schizophrenia (ABRE) for more than 2 years, and gradually she passed on the task to Jorge, who today is able to perform it satisfactorily. This perspective on the part of family members is also important so that over time, the person with schizophrenia can be socially reintegrated, feel capable, and participate in community life. We have insisted, throughout this chapter, on the importance of the integration of the person with schizophrenia into family dynamics. To encourage autonomy, it is first necessary that the family itself can perceive that the individual is greater than the disease, however debilitating it may be. When this does not happen, the person with schizophrenia tends to become more isolated, and recovery is affected. Contact with health professionals and the place of treatment is an excellent incentive to exercise the patient’s autonomy, which can be increased as part of the family’s routine. It is not possible to initially say how far the person can go, but they will certainly make a better recovery if they are encouraged daily.

A Successful Experience A Mother’s Story Bruno was the first child in a family of four brothers and sisters. Until his preadolescence, he was a docile, tender, sensitive, happy child, a good student, and very shy. Music was always a means of communication that made him overcome his shyness and brought together a group of alternative school friends.

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Experiences with drugs were never rewarding for him. They brought no comfort or joy. In contrast, through them he came to know sadness and depression. In addition, not even the education that seemed solid, the family structure, the principles, values, and love could save him from the abyss that awaited him. We watched as strangers, without access, without language, without the slightest idea of what awaited us. The great suffering was seeing him suffer, his dislocation, his restlessness, his division, his discomfort, and not knowing what it was about. When the first diagnosis of schizophrenia came, after a long pilgrimage to medical specialists and psychiatrists, we, the family members, collapsed because we were already bewildered and had lost strength. His father had been suffering for some time from Parkinson’s disease, which was progressing by leaps and bounds. The son’s suffering accelerated the process. The changes in the behavior of both men became increasingly clear. Bruno became a “stranger,” with unexpected reactions, suspicious looks, auditory hallucinations, and tormented screams, and then came his aggressiveness. It was a decisive moment in his life, the choice of a profession, of the way forward, of the future. How many uncertainties and how much insecurity! The difficulty of the first treatment was due to the side effects of the medications, which were very similar to the symptoms of the father’s disease, especially tremors in the hands. Then came the rejection of help, fear, and the worsening of the disease. Now he had his first psychotic crisis, which resulted in his first hospitalization. The methods used at the time were almost medieval, which made us transfer him to another clinic, outside São Paulo, which sought cure not only through medication in the ideal dose but also through work activities. It was the path that was opening and lighting up. However, the estrangement from the family brought a lot of suffering to everyone. Parents and siblings sought family therapy to try to put the pieces together and welcome our dear Bruno back. When he was finally reintegrated into the family, we were better prepared to understand schizophrenia and to help him live in harmony with his destiny. In addition, this is how we found the right doctor, the right medicine, and the right dose. The humble acceptance of the disease, the frank words, the increasingly natural treatment from brothers and sisters and relatives, and especially the love of those around him were the path to resuming a normal life. With the pain of the loss of his father came the understanding that it was necessary to religiously comply with what the doctors established as conduct of the treatment and not to give up the medicines so that the results could be measured. Then came work. The interruption of studies reduced the alternatives, which were already limited. So Bruno started helping at home, and, knowledgeable about computers, gave me precious support for my work as a consultant that was just beginning. Then he worked as a kitchen helper and in a paper recycling

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factory, also as an office assistant, with the first person who believed in his ability. He evolved and, today, dedicates his days to study as he managed, at the age of 44, to pass a university entrance exam, besides taking his working life seriously, like any of us. In addition, he is respected for this. Music, reading, cinema, and family will always be his company and his joy, and this happiness is now completed with his niece who, little by little, is getting to know the great man Uncle Bruno is. With him they will learn that life can be simple and complete, but a life is always to be lived with dignity. This is their destiny.

Ways to Overcome Schizophrenia brings new and difficult issues and situations into the lives of individuals and their families that have no immediate solution. In most cases schizophrenia causes a feeling that there is no way out of the enormous difficulties faced. Overcoming schizophrenia is a choice, and it can be made no matter at what stage the illness is or how long the illness has been going on for. Trusting that it is possible and constantly seeking ways to improve is the most appropriate frame of mind in relation to the practical challenges that schizophrenia poses. Solutions will be built by learning and changing over time. When schizophrenia appeared in Gabriel’s life, family members expected him to overcome the situation “naturally,” like an adolescent crisis. Even after seeing a psychiatrist, they still had doubts and did not support the treatment. It was necessary to overcome these doubts so that the treatment could be effectively implemented. Many families do not surpass this stage, and as a consequence the person with schizophrenia remains without treatment for a long time, which contributes to deteriorating family relationships and to determining a worse evolution of the disease. After the disease was stabilized, Gabriel decided to stop the treatment, and the family accepted this decision. As a consequence, he relapsed and had to be hospitalized. This fact taught him and his family that treatment cannot be neglected and medication stopped. Everyone suffered from this experience but grew from finding solutions to the practical issues they went through. Many people with schizophrenia relapse over and over again because they stop taking their medication and cannot find solutions of the kind that Gabriel’s family found. After his hospitalization, our character spent more than a year making a great effort to overcome his difficulties. It was very difficult for everyone to keep hope and learn to accept the limitations that schizophrenia brought to

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his life. However, during this time, he could count on great support from his family, and little by little he was able to find a way back into his life. Many people with schizophrenia and their families give up trying to overcome practical difficulties when they see no improvement in the illness. Overcoming is a process in which each person and family build on the trust that there are better ways to deal with situations and learn from them. This requires acceptance of the limitations imposed by the disease but also determination, hope, and confidence in the resources they will acquire along the way. Overcoming schizophrenia does not mean making its effects and symptoms disappear completely, for this seldom happens, and one should not get one’s hopes up too high. Overcoming is about finding practical, everyday solutions to improve what is possible and looking for ways to have a quality life. This is a realistic and possible hope. A good quality of life is the main result of overcoming. We understand that quality of life is broader than material comfort, and, following treatment, it is characterized by harmonious family relationships, social integration, and a productive life. These elements are very important for life to have meaning. The acceptance of the disease, care for oneself, and inner tranquility are only achieved through this meaning that each person finds for their own life, in which the strategies and changes for overcoming schizophrenia are also useful for all people who are committed to the reality that life places before them.

Learning from Living Together In this chapter we have presented various themes that we consider fundamental for family conviviality. We have tried to show that recovery and overcoming are possible processes in schizophrenia, but in order for them to happen, the constant learning in terms of the daily issues of the family is fundamental. Schizophrenia is a chronic illness and as such requires ongoing care. An important difference between this disorder and other organic diseases is that, in the case of schizophrenia, taking medications or maintaining a diet is not enough to keep the disease under control. In addition to medication care, it is necessary to care for the relationships between family members as these relationships provide the necessary support to achieve stability. In the case of schizophrenia, as in all chronic illnesses, quality of life is not an option: it is a necessity.

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Based on some examples, we have presented ways to learn from the difficulties and build other options to deal with the issues brought by schizophrenia. To overcome this problem, it is necessary to maintain a realistic hope that brings constant re-evaluation and dialogue, which will be reflected in an improved family environment. A good family relationship can be achieved when family members know the characteristics of schizophrenia. This enables each family member to work through individual issues in a way that does not stigmatize, push away, or blame the person with schizophrenia for situations they cannot handle. Based on this perspective, family members feel able and at ease to help with priority issues in the treatment of the person with schizophrenia, thus building a welcoming environment. Experience shows us that schizophrenia does not need to occupy the main role in people’s lives. Jorge, one of the authors of this book, went through the experience of identifying symptoms of schizophrenia in everything that happened to him, and this became a way to justify his unresolved issues in his own life. It took him years to realize that the disease does not justify many things in his history. Following the treatment, he learned to realize that the disease interferes in his life and how to deal with his limitations in order to minimize their impact on his daily life. In this journey, the support of his family was essential for this learning process to mature over time. A change of attitude toward schizophrenia is always possible, no matter what situation you have lived through. We have tried to provide elements for you, our reader, to think about ways of looking at your personal issues. We hope our contributions will be useful to you in your family life.

7 Recovery and New Perspectives

Recovery Schizophrenia is a disease that changes the life of the person and their family. We understand that recovery does not mean returning to a state before the onset of the disease but rather learning to live with the disorder and live with quality, both individually and in the family. Based on this perspective, we show how this process took place for Gabriel, Carlos, and Francisca.

The Recovery of Carlos Schizophrenia appeared in Carlos’ life in a serious way because, even with medication, the symptoms continued to hinder his family and social relationships, causing misunderstandings and isolation. This situation could only be circumvented with a specific treatment for treatment-resistant schizophrenia. However, in Carlos’ case, the disease led to losses in important areas of his functioning. Recovery consisted for him of a learning process based on the stabilization conditions that the treatment provided, together with the control of symptoms. At the beginning of the course of his treatment, the place where he was treated was the only public space that Carlos frequented. Considering this restriction on life, health professionals were encouraging him and creating conditions to expand his social network. It is important to remember that certain activities that for most people seem simple can require great effort from the person living with schizophrenia. For example, Carlos had known © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 J. C. d. Assis et al., Between Reason and Illusion, Copernicus Books , https://doi.org/10.1007/978-3-031-24556-5_7

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Mr. Fabio, the newspaper man, for years, but it took a lot of effort to take the initiative to talk to him and ask him to look at some magazines of his interest. This was a big step, which opened the way, with time, for other larger steps, such as making friends and playing soccer with people from the square. Gradually, the socializing dispelled the negative image of the disease as something dangerous in the community, and Carlos began to work as a monitor in the neighborhood children’s school on weekends. His family has learned, both through experiences and dialogue with health professionals, that he has certain limitations that need to be respected and that in many aspects he needs to be cared for. In addition, Carlos was also discovering new ways of living and being with people, responding to the family’s welcome and finding his place in the world. This is the meaning of Carlos’ recovery: to overcome the loss of references of what reality is and to build his space among people. For those who look at it from the outside, it seems that the changes were small, but those who have lived through a period of complete disorientation in life can understand the true human growth that this young man experienced during his recovery. For the past few years, Carlos has been learning painting with an occupational therapist who has a background in art. At first, his paintings were not very expressive, but he had been learning from her notions of aesthetics and painting techniques and developed the potential that he did not know he had until then. This therapist showed his work to a specialist, who recognized his artistic talent and suggested that he exhibit some of his paintings in an art gallery. Carlos, for the first time in a very long time, felt very fulfilled! Recovery is a long road, and everyone can build that road, no matter how many crises experienced or difficulties faced. What truly matters is to create and reestablish meaningful relationships with people and try to accomplish things that are within your reach. We understand that the issues that are important for anyone trying to live well are also important for people with schizophrenia.

Francisca’s Recovery Francisca was affected by schizophrenia in such a way that she always perceived the experiences as real. She never experienced the strangeness that allows her to doubt whether things are truly happening or not. Her recovery was based on changes that were possible from the control of symptoms as she, after several crises, started to trust and agree with her father and follow the proposed treatment.

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The fact that Francisca never accepted she had a mental illness led her to always try to impose her ideas on her family members. Since these certainties were the result of her symptoms, this process hindered family and social relationships and required much patience from her parents and sister for almost 2 years until Francisca accepted the treatment with depot medication given in consultations with the psychiatrist. She only accepted treatment when she noticed the sincere dedication of the family and trusted that the treatment they were proposing would be good for her and for everyone. The other professionals in the clinic where Francisca was treated realized her difficulty in adhering to the therapeutic plan, encouraged her to follow up with the psychiatrist, and recommended a mosaic course in a cultural center. With the medication being administered monthly, her intake was guaranteed, which made the conflicts with the family decrease a lot. The long-acting medication allows stable levels of treatment, which enables optimal control of the disease and near remission of symptoms. The family support and the mosaic course allowed her to make new friendships; and with this, Francisca was rediscovering ways to improve her life. At the cultural center, she met a young man, Alexandre, and a great affinity was soon created between them. After a few months of close friendship and common leisure activities, Francisca and Alexandre started dating. This relationship brought a new coloring to Francisca’s life, a special kind of exchange marked by mutual feelings and affections that gave new meaning to her life. All the difficulties she had lived with up to then became less important in her daily life. Today, Francisca takes other courses offered at the cultural center, participates in family life with her mother and sister, and shares her intimate feelings with her boyfriend. Francisca’s recovery shows that when the person does not understand himself as ill, it is important to seek ways of negotiation to build a meaning for the treatment since it is not perceived as necessary by the individual. In this journey it is important to preserve the bonds of trust; however, the relationship with the sick person may be difficult. Trust is the bridge to acceptance as it is easier to agree with people we trust. The person who does not accept that they have schizophrenia because they do not believe they are ill needs special attention to follow treatment and build up a recovery process. It is important to understand that this is also a symptom of schizophrenia that requires care and monitoring. There are many sufferers from this condition, and Francisca’s story is an example that, with the care of family and health professionals, it is possible to eventually discover a path to recovery.

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Gabriel’s Recovery Gabriel had his life path changed by schizophrenia, which led him to an inner experience full of suffering and left deep marks in his way of seeing the world. His path to recovery, in addition to the treatment and control of symptoms, also went through a process of discovering his place in life and getting rid of the suffering of knowing he was different from other people because of his mental disorder. The awareness of the disease can be a very heavy burden for some sufferers. This was the case for Gabriel. Over time, Gabriel was establishing relationships with his family members and health professionals that made his life possible to be supported. His siblings and parents were learning how to be welcoming to him. The psychiatrist, Dr. Marcelo, was always able to be receptive to the young man’s complaints and issues and show ways for him to understand the experiences and improve. Fatima, the occupational therapist, helped him to maintain some activities and to look for new ones, helping him to realize the importance of these activities to give meaning to his daily life. Sonia, the psychologist, accompanied Gabriel’s suffering process and helped him to get rid of it, pointing out possibilities and serving as support so that this overcoming became possible. Gabriel spent some time working as an apprentice carpenter with Mr. Agostinho, a man with the wisdom of life who took him in and gave him good advice, convincing him to return to studying. His father gave him the task of taking care of the household budget, even the payments at the bank, which greatly helped to rescue his self-esteem. Gabriel discovered that he could handle numbers well; after attending some introductory statistics classes at his brother’s college, he decided to take a statistics course. He took the university exam, passed, and, during the course, was gradually able to find his place in the world again, with new friendships and being able to overcome his intellectual difficulties. Today, Gabriel is working with statistics in a company, uses the practical skills learned from Fatima and the common sense learned from Dr. Marcelo and Mr. Agostinho, and has the inner peace of mind built with Sonia and the responsibility he learned from his father. He is a good employee and works with activities that he likes to develop. He regularly follows his treatment, goes regularly to the psychiatrist, and takes his medications every day. Gabriel’s recovery shows that schizophrenia is a disease but also a human experience which can be overcome. If we see everything only as symptoms of the disease, we will not be able to see other possibilities that life offers. Gabriel has been on a long learning path with schizophrenia and has understood how

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to find a path for his life. That is the meaning of realistic hope in overcoming the difficulties imposed by schizophrenia.

Following a Path F. P. I am 32  years old and have been receiving treatment for schizophrenia for 10 years. The situation that made the need for treatment evident occurred at the end of 1997. Until then, I had a relatively normal life and the sensibility that I had had been with me since I was a child. In 1994, I was hired by a multinational company, and I was planning my future. I was able to have my relationships and develop my skills in an absolutely normal way. In 1996, I started to feel observed, and, because I was working in the right way, I imagined myself being promoted in some way. At first, this context motivated me for some time. In addition, I had an intense love affair which was full of positive elements but which I interrupted, maybe for fear of growing up. Feeling watched and the expectation of promotion gave me stressful moments. I had lived alone since I was 18 years old in 1994, far from my family. I felt pressure from my father to attend a university to continue the studies starting with the complete technical course, which I completed in 1993. At that time, everything became very intense. The newspapers started to report a huge corruption among Brazilian politicians—“The Dwarfs of the Budget.” This case made me indignant, to such an extent that I talked with friends in a very intense way and maybe even scared them because until then I had always been very calm and hopeful. Exorbitant national interests also took away my tranquility. They were issues that did not signal positive outcomes; they were and still are events in which the culprits are rarely punished, and problems are seldom solved. I therefore started to make some changes to recover my calm, and I decided to resign from the company in order to continue my studies and to get closer to my family. I always felt enormous admiration for my father, not only because he was a great father but also because of his humanitarian, social, and professional character. He was against my resignation. The sense of hearing and the feeling of being watched and of being special did not end with the resignation. At that time, the television presenter Xuxa was pregnant, and the associations I was making brought to me the possibility of being the father of the child. Confused, and attempting to resolve these issues individually, I decided to get on a plane, with only documents, and go to Rio de Janeiro. All my family is from that state, but what I was looking for was Xuxa. I walked many kilometers through the city sleeping on the streets looking for her. While walking, I saw a lot of similarities between the people on the street and my family. It was Christmas 1997, and on December 28, I decided to look for my family. I went to my maternal grandmother’s house. She was frightened and took

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care of me. On the first night, I dreamed of my paternal grandparents, who had already passed away, and when I woke up, I decided to call my father, who lived in a country area of the state of São Paulo. So I went to meet him in the town of Itu. My father was attending psychotherapy sessions with a doctor and decided to take me to be seen. At all times the sensation of being special and being observed was incredibly intense. Dr. Ney then medicated me, and I started the treatment. Living with my father, I listened to a lot of music and tried to do the activities he asked, but it was very difficult. I liked to listen to Beatles and John Lennon, and with the music came messages associated with my thoughts. I meditated all the time on life, and a simple dead insect would put me in deep thought. I was under psychiatric treatment with Dr. Ney and psychological treatment with Dr. Miriam, who Dr. Ney had recommended. Unfortunately, my father fell ill in May and died on his birthday in June 1998. I interrupted my treatment for 6 months. At the end of 1998, I took the university entrance examination and started studying in 1999. The very intense hearing and the associations made the activities difficult, and the psychologist recommended I interrupt my course at the end of 1999. With some technical experience and almost a year of university, I looked into the possibility of tutoring high school students, which I did until 2002. In May 2001, my maternal grandmother passed away. At the end of 2002, I decided to take the university entrance exam again and started the course in 2003. In moments of more and less intense symptoms, I told myself that this time I would not give up, and I didn’t. The last year of the course in 2006 was very difficult. The bond of friendships in college was ending, and that bothered me. In January 2007, I graduated, and I was already thinking about new friendships I could form. I started a graduate course in March 2007, and I have already made new and good friendships. Today, I continue under treatment, living with the symptoms; when they become more intense, psychiatric and psychological follow-up makes a more positive interpretation of them prevail.

Medicines: New Perspectives Today there is a great investment worldwide by governmental research agencies and the pharmaceutical industry to develop new drugs. Up until now all commercially available antipsychotic drugs act on the system of a neurotransmitter called dopamine (one of the elements of information transmission in the brain). These drugs work well in order to reduce so-called positive symptoms such as hallucinations and delusions, and to prevent further acute episodes of the illness. However, they are less effective on so-called negative symptoms such as isolation and the difficulty of socializing. There is a lot of

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research into for drugs that act on other brain transmission systems like glutamate, and these drugs may be more effective on negative symptoms. Some patients present cognitive difficulties, such as problems concentrating, keeping information in the memory, and coordinating the planning of a task. These alterations make daily life difficult, even hindering medication compliance and therapy follow-up. A number of medications are being developed with the exact purpose of improving cognitive performance in people with schizophrenia. Other research focuses on testing drugs developed to prevent brain processes that result in the chronicity of the disease, called neuroprotective drugs. If this new class of drugs is successful, they may be especially useful in the early stages of the disease or even in the period before the first signs, before all the symptoms of the disorder are manifest. Today the psychiatrist uses the available medications to which the person has access, especially those that they can get for free at the state pharmacies. Many advances are occurring and should help treatment in the near future, but we must remember that the medications currently available to treat schizophrenia are already a great conquest but unfortunately are not accessible to everyone. It is fundamental that the patients and their families know their effects so that they can help the doctor and therapists find the best option for each case.

Early Treatment Cristiano Noto—Psychiatrist In recent decades, there has been a worldwide movement to pay more attention to the early stages of the disease. As happens in practically all areas of medicine, we have begun to realize that treating schizophrenia in a more incisive way since the appearance of the first symptoms frequently prevents a negative and deteriorating evolution. Just as we know that diagnosing and treating an early cancer leads to a much higher success rate than treating a cancer with metastasis, treating schizophrenia in the first episode brings possibilities that the carriers of the disease do not evolve with cognitive deficits and functional limitations that are often seen in those with years of disease and without adequate treatment. In the case of schizophrenia, the first few years after the onset of symptoms is called the “critical period.” In this stage, the crises occur more intensely and more frequently. Precisely because of this, this is when most tragic outcomes, such as suicide or episodes of violence, occur. From this perception the need for specific treatment for the first episode has become clear.

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The first challenge to implementing this treatment is to obtain early diagnosis. We know that on average, a person stays up to 8 months with psychotic symptoms before receiving any treatment. The second step is to offer intensive treatment, focused on controlling symptoms, resuming personal projects, and avoiding relapses. The first-episode clinics, which unfortunately are still practically nonexistent in Brazil, work with multidisciplinary teams and use lower doses of medication (patients are more sensitive at the beginning of the illness). Psychoeducation is exhaustively worked on with the patients and their families. This is nothing more than bringing information about schizophrenia and treatment, helping everyone to understand the risks and seriousness of the disease, as well as the fundamental role of treatment in the process of overcoming it. We already know that the centers that implement this type of more intensive treatment have lower hospitalization rates and higher levels of user satisfaction and functionality. In addition, they are economically worthwhile. The problem is that early intervention strategies help more those who have had the disease for just a short time, characterizing a “window of opportunity” for us to act. Therefore, we must increasingly see the first psychotic episode as an urgent situation that must be treated as soon as possible.

Together, the Toad Gets Easier Thus far, we have presented the advances in science in relation to schizophrenia and the journey of our protagonists toward recovery. We have emphasized the importance of family support because we know that the issues facing family members of people with schizophrenia are also complex and central to the recovery of their loved ones. Thus far we have seen how the relatives of Gabriel, Carlos, and Francisca have been learning to deal with the ups and downs of the disease and have developed ways to get closer so as to better understand them. However, new doubts and concerns arise in the course of the family’s life such as issues related to the future of their children. The family members of our protagonists found ways to share their issues through support groups in meetings promoted by family associations in their city. In these spaces of exchange, they also understood that as important as following the treatment and seeking information about new perspectives is to get together in order to exchange experiences, mutual support, and defense of rights. In these meetings the family members of our protagonists found: • Other family members with similar stories and creative solutions to difficulties.

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• Family members with very different stories and more acute or complicated problems, which helped them see that they have resources to help these lonely, exhausted, and hopeless people. • Professionals from whom they can learn about various aspects of living with illness and healthcare. • Friends to share good times and bad. • Alternatives for activities in the community. • Information on existing treatments, on the functioning of the public mental health care network, and on the rights and benefits of people with mental disorders. • Faced with the challenges of schizophrenia, isolation, shame, and feelings of powerlessness must be overcome. Many issues a family experiences can be resolved more easily and effectively when shared with others who are in similar situations. • The experience of the authors of this book in organizing an association of people living with schizophrenia and family members since 2002 is that together we are stronger to deal with practical issues, to get rid of negative feelings, and to understand and accept schizophrenia. Together, professionals, family members and people with schizophrenia can help each other in order to find ways forward and build new understandings and solutions to the challenges posed by schizophrenia. • The current moment is one of great change in mental health care in Brazil, which is why it is so important to promote new approaches to treatment and to disseminate successful experiences among family members, people with schizophrenia, and health professionals throughout Brazil. This joint work will enable advances in knowledge to become practices that change the landscape of schizophrenia in Brazil.

Participation and Advocacy Schizophrenia, like all long-term illnesses, requires continued treatment for the patient and support for the family so that they all develop resources to face their challenges and difficulties. However, a large part of the difficulties are not due to the disease itself but rather to the lack of knowledge, prejudice, and lack of resources for treatment in the public network. In this sense, it is important that patients and families know more about their rights and demand that they be met. Brazil has a national mental health policy that is being applied through specific legislation. Family members and patients can and should learn more

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about this policy—its laws, regulations, data, and services—by accessing the Ministry of Health’s website. Family members can also have a voice in the day-to-day decisions of the healthcare system in their municipality by taking part in health councils. There are many ways to participate: knowing what is happening in the community, asking for resources, and joining with others to demand improvements and changes are all examples of civic activity in this area. Today in Brazil dozens of groups and associations are working to ensure that people with mental disorders receive dignified treatment and support in their communities. In this book, we have presented the work of the Brazilian Association of Families, Friends and People with Schizophrenia (ABRE) to illustrate how civil society organizations can join together to bring about change in the community. ABRE, founded in São Paulo in 2002 by a group of people with schizophrenia, relations, and friends, emphasizes actions that enable its members to generate dialogue with all those who have connections to the illness. Among its main activities are support groups for family members and people with schizophrenia; public meetings to talk about issues related to schizophrenia with the participation of professionals, family members, and people with schizophrenia; and information through newsletters, bulletins, printed materials, and a website (www.abrebrasil.org.br). In addition, ABRE has built a network of exchange, support, and defense of rights with other associations and Brazilian and international movements, strengthening actions in partnership and disseminating information and hope to people, groups, and related associations in Brazil and Latin America. This book is also an initiative that aims to help people affected by schizophrenia to gain strength to overcome isolation and combat stigma toward the disease and mental disorders in general. We wish to exchange experiences and encourage people to get to know, support, and act in their communities by strengthening the links already established.

The Future: Early Detection One of the innovative research fronts related to schizophrenia is dedicated to detecting the onset of the disease in its early stages, also called prodromes. When this is possible, the beginning of treatment can significantly decrease the chances of an initial crisis, avoiding losses of the person’s relationships and minimizing the effects of the disease on the brain, which greatly improves the prognosis of schizophrenia.

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It is now known that before schizophrenia appears, there is a specific set of changes in the person’s functioning. Having these changes does not mean that the disease will appear but that the person has a high risk of having schizophrenia. What have scientists done? They have developed elaborate tests that detect these changes and apply them to young people in the 16- to 25-year-­ old age group where schizophrenia usually appears. Those who have a high risk are asked to follow up periodically without any use of medication. People in this group who show the initial symptoms of schizophrenia begin treatment at the onset of the illness. Early detection in the general population is a very laborious process; it requires interviewing and testing many people to find only a few who are at risk of developing the illness. This type of research is justified for two reasons: early monitoring for schizophrenia can help people to have a better future with less suffering, and advances in this research can provide future doctors with the knowledge and procedures to recognize schizophrenia in their patients at an early stage. Another line of research that relates to early detection is the development of neuroprotective drugs that prevent the brain processes that affect the brain of the person with schizophrenia. If these drugs work, in the future, it will be possible to develop procedures to prevent the disease. A very positive aspect of these studies in early detection is that they are accompanied by educational work with young people on the importance of mental health. It is thus hoped that they will learn that schizophrenia is a disease, that it can be treated, and that this understanding will reduce the prejudice and discrimination experienced by sufferers. Today, we can glimpse a better future for people who may have schizophrenia, of being accepted and treated in the early stages of the disease with increasingly effective and protective medications. This is the great investment of scientists to discover new ways to treat and minimize the effects of the disease.

Perspectives Advances in the scientific understanding of schizophrenia and possible alternatives for recovery provide new perspectives for further understanding and treatment of the illness. We have tried to present in accessible language some key scientific findings for the understanding of schizophrenia. We believe that this new knowledge may contribute to improving treatment and reducing the prejudice in relation to mental disorders.

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Major advances in drug development can improve the lives of people with schizophrenia, providing an encouraging outlook for the future; for this to occur, medications and psychosocial interventions need to be delivered in a consistent and coordinated way. To generate integrated and socially responsible practices, scientific knowledge must promote dialogue between the various health professionals and between professionals, patients, and their families. In this sense, we have also described how family members and people living with schizophrenia can organize themselves to access current treatments and integrate into the community, either through mutual aid groups or participation in movements for the defense of their rights.

Realistic Hope In this book we have tried to approach several aspects of schizophrenia, elucidating behavior and beliefs that will be useful to you, our reader. It has to be said that writing the book has required a lot of dialogue between the authors, negotiation between our different points of view, and on occasions overcoming disagreements to build agreements, similar to what happens in the course of negotiating with the illness, in the experience of the person living with schizophrenia and between them and the others involved. This process has also provided us with growth. We hope that this book will help clarify the experiential aspects of schizophrenia and improve the quality of life of both you, our reader, and your family members. One of our goals was to present themes and situations in which our readers could recognize themselves, visualizing the human side of living with schizophrenia because we know that this is a great difficulty. Another aim was to invite our readers to get to know their own particular issues. It is important to recognize ourselves as a starting point so that we can try to understand the individual issues we live with, the paths, and the solutions. The stories of Gabriel, Carlos, and Francisca, their families, and friends are based on people with whom we have lived. We knew from the beginning that we would not be able to account for all the stories we knew, so we were guided by realistic hope to present some possible paths. However, what is this hope? It is certainly not the hope that things will change one day because this position prevents us from taking action. In the face of such a complex illness, many people cultivate the hope that medicine will find a cure for schizophrenia but do not make any move to change their condition when faced by the illness. Realistic hope is not passive and does not just wait around but can be

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seen in the constant search for improvement and problem solving, that is, it is based on the certainty that the future can be better as a result of the changes that can be made in the world of which we are part. We are aware of the real difficulties that many people with schizophrenia and their families face in their daily lives and thus seek to bring together understandings based on our experience and to point to possible paths for those suffering from the illness because the huge difficulties and problems people experience often make them prisoners of the illness and prevent them from recognizing alternatives. We sincerely hope that our work can fulfil the role of promoting dialogue between all those involved and interested in the issue of schizophrenia. Many difficulties can only be overcome when we are able to see the world through the eyes of the other in order to understand the whys and wherefores of their attitudes and behavior. It is a necessary and constant exercise in schizophrenia, either to understand what happens to the person or for them to understand that health professionals and family members want the best life for them. This is the true role of dialogue. Brazil is currently consolidating the treatment of mental disorders in the community, leaving behind the model of exclusion represented by long hospitalizations for diseases such as schizophrenia. We believe that this book helps to clarify this disease to people so that the forms of treatment are the best possible according to the conditions of each community and each person. We are aware that we have not exhausted the subject. Many stories are different from those told in this book, and even those who have recognized in the trajectories of Gabriel, Francisca, Carlos, and their relative’s stories very similar to their own will have other questions that have not been addressed in this book. As we recognize the importance of quality information and listening to our readers, we have formed a team that maintains a psychoeducation page about schizophrenia on the Internet, in which we intend to expand the proposal of our book and continue discussing this mental disorder. Pay us a visit! https://web.facebook.com/proesqunifesp https://web.facebook.com/abre.esquizofrenia www.abrebrasil.org.br

Appendix

Links to websites, services, projects, associations, publications, and others

Schizophrenia Associations Schizophrenia & Psychosis Action Alliance https://sczaction.org Schizophrenia Society of Canada – www.schizophrenia.ca Schizophrenia Research Society - https://schizophreniaresearchsociety.org Schizophrenia Research Forum – https://www.schizophreniaforum.org ABRE –Associação Brasileira de Familiares, Amigos e Pessoas com Esquizofrenia (Brasil) www.abrebrasil.org.br https://www.facebook.com/abre.esquizofrenia/ https://www.youtube.com/channel/UCuvKuOcksakBEvDJJEBfL7g

Mental Health Associations USA Mental Health America: https://mhanational.org/issues/mental-­health-­ rights This group focuses on the rights of people with mental illness.

© The Editor(s) (if applicable) and The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 J. C. d. Assis et al., Between Reason and Illusion, Copernicus Books, https://doi.org/10.1007/978-3-031-24556-5

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NIMH – National Institute of Mental Health RAISE Resources for Patients and Families h t t p s : / / w w w. n i m h . n i h . g ov / h e a l t h / t o p i c s / s c h i zo p h re n i a / r a i s e / raise-­resources-­for-­patients-­and-­families NAMI – National Alliance for the Mentally Ill – https://www.nami.org Active Minds - https://www.activeminds.org Changing the conversation about Mental Health AOT - Treatment Advocacy Center - https://www.treatmentadvocacycenter. org/family-­and-­loved-­ones Eliminating Barriers to the Treatment of Mental Illness AFSP - American Foundation for Suicide Prevention - https://afsp.org

International Clubhouse International - https://clubhouse-­intl.org EUFAMI – European Federation of Associations of Families of People with Mental illness – www.eufami.org ISPS- The International Society for Psychological and Social Approaches for Psychosis http://www.isps.org Mental Health Foundation of New Zealand – https://mentalhealth.org.nz MIND – https://www.mind.org.uk SANE (Australia) – www.sane.org WFMH - World Federation for Mental Health - https://wfmh.global

Blogs, Online Communities and Videos Overcoming Schizophrenia https://overcomingschizophrenia.blogspot.com/ Written by Ashley Smith, an advocate, author, and speaker.

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Facebook Resources: https://www.facebook.com/SchizophreniaSupport/ Intervoice Connecting people and ideas in the hearing voices movement https://www.intervoiceonline.org/#content WebMD first-person account videos https://vimeopro.com/user23094934/consumer-and-family-portal/page/1? TED videos What is schizophrenia? Anees Bahji produced this by TED-Ed, TED’s youth and education initiative. Directed by Artrake Studio, narrated by Susan Zimmerman, music by Stephen LaRosa. https://www.ted.com/talks/anees_bahji_what_is_schizophrenia A tale of mental illness - from the inside Ely Sacks TED Talk (2012) https://www.ted.com/talks/elyn_saks_a_tale_of_mental_illness_from_ the_inside The voices in my head Eleanor Longden TED Talk (2013) https://www.ted.com/talks/eleanor_longden_the_voices_in_my_ head#t-­668263 Compassion for voices: a tale of courage and hope A film about the compassionate approach to relating with voices (2016) https://www.youtube.com/watch?v=hPgFfYoUJCk

Books on Schizophrenia First-person and family reports Operators and Things: the inner life of a schizophrenic Barbara O'Brien Silver Birch Press, 2011 (1st Ed. 1958)

138 Appendix

I never promised you a rose garden Hannah Green St. Martin's Paperbacks; Reprint 2008 (1st. Edition 1964) An angel at my table: the complete autobiography Janet Frame Counterpoint; Reprint edition, 2016 This single edition gathers the three volumes of Janet Frame’s autobiography -  To the Is-Land  (1983),  An Angel At My Table  (1984) and The Envoy From The Mirror City (1985) Welcome, silence: my triumph over schizophrenia Carol North CSS Publishing, 2003 (1st. Edition 1987) The quiet room: a journey out of the torment of madness Lory Schiller Grand Central Publishing, 2008 (1st Edition 1994) The day the voices stopped Ken Steele Basic Books; Revised edition, 2002 Divided minds: twin sisters and their journey through schizophrenia Pamela Spiro Wagner & Carolyn Spiro St. Martin's Griffin, 2006 Me, myself, and them: a firsthand account of one young person's experience with schizophrenia Kurt Snyder, Raquel E. Gur, et al Oxford University Press; 2007 The center cannot hold: my journey through madness Elyn R. Sacks Hachette Books, 2007 (reprint edition, 2008) Ben behind his voices: one family's journey from the chaos of schizophrenia to hope Randye Kaye Rowman & Littlefield Publishers, 2011 Henry's demons - living with schizophrenia: father and son tell their story Henry Cockburn & Patrick Cockburn Scribner, 2011

 Appendix 

The collected schizophrenias: essays Esmé Weijun Wang Graywolf Press, 2019 The Heartland: finding and losing schizophrenia Nathan Filer Faber & Faber, 2019 The edge of every day: sketches of schizophrenia Marion Sardy Pantheon, 2019 A road back from schizophrenia: a memoir Arnhild Lauveng Skyhorse, 2020 A room with a darker view: chronicles of my mother and schizophrenia Claire Phillips DoppelHouse Press, 2020 Fiction books themed around schizophrenia I know this much is true Wally Lamb Harper Perennial, 2008 Lowboy John Wray Farrar, Straus and Giroux, 2009 The shock of the fall Nathan Filer HarperCollins Publishers, 2014 Made You Up Francesca Zappia Greenwillow Books, 2015 Challenger Deep Neal Shusterman Walker Books, 2020

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140 Appendix

Guides and Manuals for families and people with schizophrenia The complete family guide to schizophrenia Kim T. Mueser & Susan Gingerich The Guilford Press; Illustrated edition 2006 The voice inside: a practical guide for and about people who hear voices Paul Baker and contributors P & P Press, 2009 I'm not sick, I don't need help! How to help someone with mental illness accept treatment Xavier Amador Vida Press; 10th Anniversary Edition, 2011 Living with Voices: 50 Stories of Recovery Marius Romme, Sandra Escher, Jaqui Dillon, Dirk Corstens, Mervyn Morrys (editors) PCCS Books; reprint edition, 2013 Surviving schizophrenia: a family manual. 7th Ed. Harper Perennial; revised, updated edition, 2019 Literary Journalism, technical and scientific books Schizophrenia Norman Sartorius & Mario Maj (Editors) WPA Series: Evidence and experience in psychiatry Wiley, 2002 A beautiful mind: the life of mathematical genius and Nobel Laureate John Nash Sylvia Nasar Faber & Faber, 2002 (first published 1998) Recovery from Schizophrenia: psychiatry and political economy Richard Warner Routledge, 2003 Breaking the silence: mental health professionals disclose their personal and family experiences of mental illness Stephen Hinshaw (editor)

 Appendix 

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Oxford University Press, 2008 The soloist Steve Lopez Berkley; reprint edition, 2010 Anatomy of an epidemic: magic bullets, psychiatric drugs, and the astonishing rise of mental illness in America Robert Whitaker Crown, 2010 (1st edition) Understanding psychosis and schizophrenia: why people sometimes hear voices, believe things that others find strange, or appear out of touch with reality, and what can help Cook, A. et. al. British Psychological Society, 2015 Available at: http://www.bps.org.uk/system/files/Public%20files/rep03_ understanding_psychosis.pdf The gene: an intimate history Siddhartha Mukherjee Scribner, 2016 When the sun bursts: the enigma of schizophrenia Christopher Bollas Yale University Press; reprint edition, 2016 Our most troubling madness: case studies in schizophrenia across cultures Edited by T. M. Luhrmann & Jocelyn Marrow University of California Press, 2016 No one cares about crazy people:  the chaos and heartbreak of mental health in America Ron Powers Hachette Books, 2017 (1st edition) Hidden Valley Road: inside the mind of an American family Robert Kolker Doubleday, 2020 Desperate remedies: psychiatry’s turbulent quest to cure mental illness Andrew Skull Belknap Press: an imprint of Harvard University Press, 2022

Glossary

Abulia, Lack of will 

Negative symptoms characterized by a lack of will to perform the most ordinary and necessary activities. Acute dystonia  This is a side effect of antipsychotic medications that affects the motor system (extrapyramidal tract). Dystonia is the painful, persistent, and involuntary contraction of some muscles of the body. The most affected are the muscles of the neck, the eyes, and those responsible for posture. In addition to the motor symptoms, the person may also have mental discomfort and an inability to think. Acute dystonia usually occurs within the first few hours after taking antipsychotic medication. Acute psychotic episode  A situation in which the person is under the strong effect of the symptoms of delirium and hallucinations. It is characteristic of schizophrenia but can happen with other diseases, for example, drug abuse or withdrawal or liver malfunction (hepatic neuropathy). Affective disorders or mood disorders  A mental disorder characterized by exaggerated affective polarization and mood swings. In bipolar disorder (formerly known as manic depressive disorder), there may be a shift from high euphoria to deep depression over a period of days or weeks. Some people have only mania, and others have only depression. These mood polarizations do not react to positive or negative stimuli from the environment. Agranulocytosis  A severe decrease in neutrophils, blood components. Use of the medication clozapine can cause this effect on rare occasions, so periodic testing is needed to ensure that agranulocytosis does not occur. Akathisia  A side effect of neuroleptics characterized by a feeling of restlessness, which may be manifested as agitation, such as continually getting up and sitting down, pacing, or moving the hands and feet.

© The Editor(s) (if applicable) and The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 J. C. d. Assis et al., Between Reason and Illusion, Copernicus Books, https://doi.org/10.1007/978-3-031-24556-5

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144 Glossary Allogy 

Negative symptoms characterized by poverty in language and difficulty in communication. Anhedonia  Negative symptoms characterized by the loss of the ability to feel pleasure, whether in affective situations or everyday situations and activities. Antidepressants  Medications indicated for the treatment of depression generally begin to take effect 2 to 4 weeks after they are started. Auditory hallucinations  Hearing voices without the external stimulus, without anyone speaking; these voices comment, praise, criticize, and give commands. Clozapine  Medication recommended for people who do not respond well to at least two antipsychotics used for the recommended time, in this case their illness is called treatment-resistant schizophrenia. DALY (disability adjusted life years) overload  An epidemiological measure that refers to years of healthy life lost, covering years lost due to early death and disability from disease. Delirium of grandeur  The person believes they are superior to others or have a special mission that sets them apart from others. Delirium  A fixed belief that has no basis in reality. People suffering from delusions are generally convinced that they are famous, suffer from persecution, or are capable of remarkable achievements. Diagnosis  Medical diagnosis is the knowledge or judgment made by the physician about the characteristics of a disease or clinical situation, which frequently leads to medical prognosis, based on therapeutic possibilities, about the duration, evolution, and eventual end of the disease or clinical picture under their care or guidance. The diagnoses are categorized according to the International Classification of Diseases (ICD), and schizophrenia is one of the possible diagnostic categories used in psychiatry. Disorganization or disintegration of thinking  Perceived through the person’s speech, which relates several subjects at the same time, jumping from one to another with the result that their speech is incomprehensible. Dopamine  One of the chemicals that transmit information between neurons is a type of brain cell that has this function. Dopamine is responsible for the importance given to external stimuli by the brain. Early detection  A follow-up that makes it possible to diagnose the psychotic crisis at the beginning or to prevent it from happening by treating the period preceding it (prodromes). Electroconvulsive therapy (ECT)  Therapeutic intervention is used for cases that do not respond to other interventions, mainly with people who have experienced extreme depression for long periods, with suicidal tendencies, and who have not responded to medication or environmental changes. In schizophrenia, its main indication is for cases of catatonia. Emotional blunting  Negative symptoms are characterized by the loss of the capacity to express affections or correspond to the affective postures of other people. Epidemiology  A research area that studies how diseases are distributed in societies.

 Glossary  Extrapyramidal symptoms (SEP) 

145

Side effects caused by antipsychotics. These include uncontrollable movements of the face, arms, and legs. Parkinsonism, acute dystonia, dyskinesia, and tardive dystonia are included in this group of symptoms.They can usually be controlled by decreasing the dose of antipsychotic medication or by introducing other blocking medications. Feeling of inferiority  A feeling usually generated by stigma and by the person not performing as well as they would like in response to social demands. Guilt delirium  The person feels guilty about events that do not concern them, even distant events. Hallucination  An alteration of perception. Seeing, hearing, smelling, tasting, or touching things that are not present. Involuntary internment  The process of entering the hospital is called admission. Voluntary admission means that sick people request treatment and are free to leave the hospital whenever they want. People who are very ill may be admitted to a healthcare facility against their will or compulsorily. There are two ways in which this can happen: – Involuntary: When the family requests hospitalization. In this case, the patient will also be evaluated by a doctor to confirm the existence of a recommendation for hospitalization. In Brazil, it is necessary for the psychiatrist to fill out an involuntary hospitalization authorization that is signed by the psychiatrist and a responsible family member. The Ministry of Health receives these authorizations and verifies that the justification for involuntary hospitalization was correct. Reasons for involuntary hospitalization are that the patient is unable to fully understand and make an informed decision regarding treatment, care, and supervision and/or is at risk of harm to themself or others or will suffer substantial mental or physical deterioration if not hospitalized. – Compulsory: The internment is determined by a court order after a request by a public entity, independent of the consent of a responsible person. Lack of insight or criticism  When the person does not perceive or believe that the symptoms of the mental disorder are aspects of the illness, the person does not think they are ill. Long-acting antipsychotics  Antipsychotics are applied by intramuscular injection and act for a week to a month, depending on the dose and brand of the drug. A small amount of the active molecule of the drug is released each day, removing the need for daily pill-taking. Medication side effects  Side effects occur when a drug reaction occurs that goes beyond or is unrelated to the therapeutic effect of the medication. Some side effects are tolerable, but some are so severe that the medication must be stopped. Less serious side effects include a dry mouth, restlessness, muscle stiffness, and constipation. More serious side effects include blurred vision, excessive salivation, body tremors, nervousness, insomnia, tardive dyskinesia, and blood changes.Some medications are available to control side effects. It is important to learn to recognize side effects because they are sometimes confused with symptoms of illness. A doctor, pharmacist, or mental health worker can explain the difference between symptoms of illness and side effects due to medication.

146 Glossary Medicines 

In psychiatry, medication is usually prescribed in tablet or injectable form. Several different types of medications may be used, depending on the diagnosis. The doctor should explain the names, dosages, and functions of all medications and separate the generic names from the brand names in order to reduce confusion. 1.  Antipsychotics: (see Tables 4.1, 4.2, and 4.3 on pages 75, 76, and 77, respectively). They reduce agitation, hallucinations, and destructive behavior and may provide some correction of other thought changes. Side effects include changes in the central nervous system affecting speech and movement and reactions affecting the blood, skin, liver, and eyes. Periodic monitoring with blood tests and liver function evaluation is recommended. 2.  Antidepressants: these are generally slow-acting medications, but if there is no improvement after 3 weeks, they may not be effective at all. 3.  Mood stabilizers, e.g., lithium carbonate, used in manic and manic-depressive states to help stabilize the large mood swings that are part of the illness. Regular blood tests are needed to ensure proper levels of the medication. Some side effects such as thirst, tingling, blurred vision, and nausea may occur. 4.  Tranquilizers: Valium, Lorax, Frontal, Lexotan, Rivotril. Most of these medications are part of the pharmacological class called benzodiazepines. These medications can help calm agitation and anxiety. 5.  Medications for side effects, also called anticholinergics. Brand names: Cinetol, Akineton. Generic Name: Biperiden. Mental health legislation  Legislation for the medical care and protection of persons with mental illness. The laws also ensure the rights of patients who are compulsorily admitted to the hospital and describe the defense and review procedures. In Brazil, the main law in mental health is Law 10.216 of April 6, 2001. Mental health  Describes an appropriate balance between the individual, their social group, and the broader environment. These three components combine to promote psychological and social harmony, a sense of well-being, self-fulfillment, and control of the surrounding environment. Mental illness/mental disorder  A physiological abnormality and/or biochemical irregularity in the brain that causes considerable disturbance of thinking, mood, perception, orientation, or memory, seriously impairing insight, behavior, reasoning ability, or the ability to perform the ordinary activities of life. Mental state examination  Examination of signs and symptoms performed at the psychiatric consultation to assess various aspects of the patient’s condition. Molecular neuroimaging  An imaging exam that allows the distributions of chemical substances in the living brain to be seen. It is important for statistical research to learn general aspects of the characteristics of chemical changes in schizophrenia. This test is not used to make individual diagnoses. Multifactorial causes  When several factors interfere with symptoms, the effect of other causes increases or decreases.

 Glossary  Multiprofessional, multidisciplinary team 

147

A team that cares for people with mental disorders in the various areas of mental health: psychiatrist, psychotherapist, occupational therapist, personal assistant, and nurse, among others, as a therapeutic companion. Negative symptoms  Symptoms of schizophrenia are linked to affective blunting, the loss of the will, the ability to feel pleasure, fluent communication, and express emotions. Neuroleptic antipsychotics  Also called neuroleptics or major tranquilizers, these are specific drugs used in the treatment of mental disorders and act by controlling psychotic symptoms such as delusions and hallucinations. Neuroplasticity  The capacity of the brain to adapt to the conditions experienced by the person; if the person becomes symptomatic, the brain adapts, but if the person strives to become asymptomatic and acquire new skills, the brain also adapts to new activities. Neuroprogression  Brain development from gestation to adulthood is influenced by many factors, and care for the physical health of children and adolescents is important. Neuroprogression can change its natural course with untreated schizophrenia but can be improved with treatment and psychosocial rehabilitation. Neuropsychology  Treatment is composed of the interface between psychology and neurology for the rehabilitation of people by working on their cognitive functions. Neurotransmitter  Chemical substances that transmit information in the brain, establishing communication between neurons and brain cells that have this informational function. Occupational therapist  Health professionals working with human activities plan and organize daily life, enabling a better quality of life. Paranoia  Tendency to the unjustified distrust of people and situations. People with paranoia may think others are ridiculing them or plotting against them. Paranoia is classified as a delusional disorder. Parkinsonism  Another side effect that affects the extrapyramidal motor system. Parkinsonism is divided into two categories: hypokinetic and hyperkinetic. Hypokinetic symptoms include decreased muscle movement, rigidity, clumsy, and rigid facial movements, and possibly depression and apathy. Hyperkinetic symptoms are agitation of the lower extremities, restlessness, tension, tremors, and rapid rhythmic movements of the upper extremities. These symptoms usually occur between a few days and a few weeks after the start of the treatment of an acute phase. Persecutory delusions  The person feels persecuted, watched, or filmed. They believe that other people want to harm them or their loved ones. Postpsychotic depression  This depression usually occurs after an acute psychotic episode or crisis. Prodromes  A period of time preceding an acute crisis with schizophrenia when there are subtle changes in behavior, thoughts, and emotions and which can last for months or years.

148 Glossary Psychiatrist 

A doctor who specializes in the treatment of mental and emotional disorders. To obtain the qualification a medical residency in psychiatry or an examination in psychiatry is required. A check can be made with the medical council to see if the doctor is registered as a specialist. Psychoeducation  A dialogue-based therapeutic activity devoted to presenting characteristics of schizophrenia and ways of coping with them. A family approach or an approach for people living with schizophrenia may be used. Psychosis  The group of mental disorders is characterized by hallucinations, delusions, and loss of contact with reality. Psychotherapist  Professionals specialized in psychotherapy for emotional conflicts and/or treatment of mental disorders. Receiver  Special places in neurons that respond to specific chemical messages between cells. Reference delirium  The person believes that everything that happens around them is about them or their behavior. Rehabilitation  Programs designed to help people return to normal functioning after a disabling illness, injury, or drug addiction. They are designed to help people with mental illness live as independently as possible. Schizoaffective, schizoaffective disorder  A mental disorder that presents symptoms of schizophrenia and symptoms of bipolar disorder at the same time, making up a set of symptoms characteristic of both diagnoses. Schizophrenia  Schizophrenia is a medical diagnosis for a mental disorder that evolves with psychotic symptoms and usually has a chronic evolution. Common symptoms include hallucinations, delusions, thought and speech disorders, and behavioral changes that include social withdrawal. Self-esteem  Each person’s evaluation of themselves and how they feel about themselves in relation to other people. Self-reference  Delusional symptoms in which people perceive everything that happens around them and what people do with being related to it. Social maladjustment  A set of behavior, attitudes, and forms of relationships that hinder a person’s social experiences. Stigma  Discrimination against a person or group because of a stereotype. This discrimination hinders the coexistence of the person or group and decreases the conditions of life, work, and participation in society. Structural neuroimaging  An imaging exam that allows the structures of the living brain to be seen. This is important for statistical research to learn general aspects of the characteristics of structural changes in schizophrenia. This test does not diagnose schizophrenia but rather aims to exclude other diseases that can cause manifestations similar to schizophrenia such as brain tumors and autoimmune diseases. Tardy dyskinesia  This side effect affects the extrapyramidal motor system and is characterized by involuntary, sudden, rapid abnormal movements, such as irregular blinking, grimacing, tongue movements, sticking out the tongue, and vermiform movements of the fingers and toes.

 Glossary  Taste and smell hallucinations 

ment and food.

Time of untreated psychosis 

149

Smelling and/or tasting strange things in the environ-

Time between the onset of symptoms of psychosis, such as schizophrenia, and starting recommended treatments. The longer the time of untreated psychosis, the worse the prognosis. Treatment plan  This refers to therapy or medication intended to cure the disorder or relieve symptoms. In psychiatry, treatment generally consists of a combination of medication, counseling advice, and recommended activities, which together make up the person’s treatment plan. Treatment-resistant schizophrenia  Presentation of schizophrenia in which the person does not respond well to at least two types of antipsychotics used with the recommended dose and for the recommended time to provide the therapeutic effect. In these cases, the use of clozapine is recommended. Visual hallucinations  Seeing people or figures without any external stimulus, without anyone present.

Index

A

L

Antipsychotic, 2, 17, 30, 48, 49, 51, 57, 58, 65, 67, 70–75, 126 Autonomy, 34, 64, 69, 114, 115

Lack of insight, 24, 64 Living well together, 102, 118, 119

C

Cognitive symptoms, 17 Coping, 102, 106 D

Diagnosis of schizophrenia, 28, 35, 38, 39, 50, 116 E

Early intervention, 70, 128 Epidemiology, 42, 44

M

Multidisciplinary treatment, 53, 64, 69

N

Negative symptoms, 17, 44, 75, 126, 127 Neurobiology, ix Neuroplasticity, 51 Neuroprogression, 49, 50 New perspectives, 52, 128, 131

P F

Family relations, xiv, 5, 77, 105, 109, 110, 112, 117–119 First episode, 127, 128

Positive symptoms, 75, 126 Prodromes, 6, 48, 130 Psychiatric hospitalization, 61 Psychosocial care, 30, 33, 64

© The Editor(s) (if applicable) and The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 J. C. d. Assis et al., Between Reason and Illusion, Copernicus Books, https://doi.org/10.1007/978-3-031-24556-5

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152 Index R

Realistic hope, 31, 39, 52, 99, 119, 125, 132 Recover, 18, 20, 21, 28, 77, 125 Recovery, 1, 2, 8, 18, 20, 21, 23, 25, 32, 43, 51, 54–56, 59, 77–79, 107, 113–115, 118, 121–124, 128, 131, 140 Rehabilitation, 18, 33, 64, 70, 76–77 Relapse prevention, 50 Religiosity/spirituality, 25, 26 Resistant schizophrenia, 66, 67, 85, 92, 107, 121 S

Schizophrenia, 1–10, 12–21, 23, 26, 28–36, 38–70, 72–78, 81–99,

101–119, 121–125, 127–133, 135–141 Self-stigma, 83, 88, 94, 95 Stigma, 7, 15, 81–84, 86, 87, 90–93, 97–99, 113, 130 T

Treatment, 2–4, 7, 8, 12, 15, 17–21, 23, 24, 26–46, 48–78, 83–87, 92–99, 103, 104, 106–109, 111–119, 121–133, 136, 140 Treatment at the first episode, 127 Types of antipsychotics, 17, 48