Chronicity Enquiries: Making Sense of Chronic Illness [1 ed.] 9781848881501, 9789004371934

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Chronicity Enquiries

Probing the Boundaries Series Editors Dr Robert Fisher Dr Ken Monteith

Lisa Howard Dr Daniel Riha

Advisory Board James Arvanitakis Katarzyna Bronk Jo Chipperfield Ann-Marie Cook Peter Mario Kreuter S Ram Vemuri

Simon Bacon Stephen Morris John Parry Karl Spracklen Peter Twohig Kenneth Wilson

A Probing the Boundaries research and publications project. http://www.inter-disciplinary.net/probing-the-boundaries/ The Making Sense Of Hub ‘Chronicity’

2013

Chronicity Enquiries: Making Sense of Chronic Illness

Edited by

Zhenyi Li and Sara Rieder Bennett

Inter-Disciplinary Press Oxford, United Kingdom

© Inter-Disciplinary Press 2013 http://www.inter-disciplinary.net/publishing/id-press/

The Inter-Disciplinary Press is part of Inter-Disciplinary.Net – a global network for research and publishing. The Inter-Disciplinary Press aims to promote and encourage the kind of work which is collaborative, innovative, imaginative, and which provides an exemplar for inter-disciplinary and multi-disciplinary publishing.

All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means without the prior permission of Inter-Disciplinary Press.

Inter-Disciplinary Press, Priory House, 149B Wroslyn Road, Freeland, Oxfordshire. OX29 8HR, United Kingdom. +44 (0)1993 882087

ISBN: 978-1-84888-150-1 First published in the United Kingdom in eBook format in 2013. First Edition.

Table of Contents Preface The Stories We Like to Tell Zhenyi Li and Sara Rieder Bennett

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Section 1 The Traditional Stories Chronic Illness Interpreted in ‘Inner Canon of Yellow Emperor’: Why Is It Neglected? Zhenyi Li Sublime Illness: Friedrich Schiller’s Chronic Lung Disease and the Concept of the Sublime Carmen Bartl

3

13

Section 2 The Personal Stories Mandated Motherhood: Biopsychosocial Aspects of Coping with Infertility Sara Rieder Bennett

25

Psychosocial Support in Multiple Sclerosis: The Confidant Relationship Explored Jane Grose, Jenny Freeman and Heather Skirton

39

Fear of a Living Death: A Foucauldian Discourse Analysis of Chronicity, Terminal Illness and Euthanasia Anna Ryan, Mandy Morgan and Antonia Lyons

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Health and Illness Representations in Patients with Rheumatic Disease Céu Sá and Abílio Oliveira

59

Managing Multiple Chronic Illnesses: Narratives of Puerto Rican Latinos Living in the U.S. Louise Reagan

67

Section 3 The Visual and Virtual Stories Children’s Experience of Living with Cancer Ligia Lima and Marina Lemos

79

Conquering AIDS through Narrative: LongLife Positive HIV Stories Felicity Horne

89

Lifting the Lid of Pandora’s Box: Alzheimer’s Disease in the Movies Amir Cohen-Shalev and Esther-Lee Marcus

103

Passing Strange: Illness, Shame and Performance Brenda Foley Depression, Disgrace and Categorical Distinctions: The Construction of a Stigma-Resistant Self in Published Affective Disorder Narratives Peta Cox

111

119

Section 4 The Caregivers’ Stories Improvisation: Five Capacities for Coping with Trauma and Loss in Chronic Illness Patricia Fennell, John Esposito and Anne Fantauzzi

135

Does Social Support and Self-Esteem Determine Depression in Chronically Ill Patients? Zaeema Riaz, Riaz Ahmad and Sarwat Jahan Khanam

143

Illness or Impairment? Human Frailty as a Guiding Axis: A Case Study Involving Young Cancer Sufferers in São Paulo, Brazil Tatiana Piccardi

159

Is the New Care Planning Approach to Long Term Conditions Suitable for All Patients? The Case of Diabetes Sally J. Giles and Penny Rhodes

167

General Practitioner Perceptions of Chronic Illness Place People Somewhere between Health and Illness Marjan Kljakovic

177

Preface: The Stories We Like to Tell Zhenyi Li and Sara Rieder Bennett There is no such thing as just a story. A story is always charged with meaning… And we can be sure that if we know a story well enough to tell it, it carries meaning for us. Robert Fulford 1 One powerful way to make sense of something is to tell and share stories of it. The stories of chronic illness carry meanings for everyone with or without chronic health conditions. These stories raise our awareness of diverse experiences, interpretations, and treatment of chronic illness. Look at any civilisation: they are never short of narrations on chronic illness. This is natural because chronic illness is a crucial matter every community seeks to understand and to transfer the meanings verbally so that an oral or written tradition can carry on the stories. The stories are different across cultures due to different approaches we have tried to make sense of chronic illness. The illness may be related to an evil curse in one community, and to a virus in another. This is also natural because chronic illness impacts our body, mind, and spirit. One interpretation cannot be sufficient to explain our experience. Multiple stories are our efforts to figure out this world and everything that takes place in it. They are all multidimensional and we do not even know the limits to these dimensions. Much like the Hindu parable of the blind men and the elephant, our individual and cultural perspectives bring about multiple interpretations of chronic illness. Our multicultural communities and traditions, fortunately, help us to preserve as many stories as possible to sketch this world including chronic illness as closer as possible to the reality. Unfortunately, one master story has been changing the whole landscape of our civilizations. The master story starts to take over the other stories, eliminate diversity, and form a monoculture interpretation of chronic illness. The master story has been spread out at an unimaginable speed with support from our globalising communication, education, medical and pharmaceutical industry. The Internet has become the dominant channel for people to search for and exchange information. The biomedical model is prevailing in medical and nursing schools. Chronic illness across cultures now receives not only the standardised name for each symptom, but also standardised treatment and medication. In short, there becomes only one story told about chronic illness. There is only one way to make sense of chronic illness. This book, along with previous editions for papers presented in the Making Sense of Health, Illness, and Disease (MSO: HID) conference series, aims to embrace, archive, and preserve diverse meanings and stories of health, illness, and disease before they vanish in our civilisations, and to initiate multidisciplinary and multicultural conversations. This book, in particular, records dialogues on chronic

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Preface

__________________________________________________________________ illness among the participants in the 10th Global Conference of MSO: HID that took place in September, 2011 at Oxford University. Experts from six continents, multiple disciplines, and diverse cultural backgrounds presented wonderful stories on chronic illness in that conference. The conference was so fruitful and constructive that the conference steering committee decided to continue with another special conference on chronic illness in 2012. Therefore, the papers selected in this book just start our journey to make sense of chronic illness through multiple stories and perspectives. As university faculty, we like to encourage our students to read academic research papers as stories. So would we suggest here. The collection of chapters in this book includes not only high quality academic research papers but also amazing stories. There are emotional and physical experiences of personal or community identity fluctuations caused by chronic illness that you may find more real than those presented in a novel. There are also multiple ways to express chronic illness experiences. This collection seeks to expand illness narratives to include traditional, personal, visual and virtual, and caregivers’ perspectives. From a traditional perspective, Zhenyi Li argues that the modern biomedical health care system has banished diverse traditions in chronic illness interpretation. Carmen Bartl finds that three hundred years ago Friedrich Schiller had already weaved his chronic illness experiences into his writings. Stepping into the personal zone, Sara Rieder Bennett explores the impact of individual and socio-cultural factors on understanding the experiences of women with infertility. Jane Grose, Jenny Freeman and Heather Skirton explore the confidant relationship to multiple sclerosis patients in order to help both care receivers and providers. Anna Ryan, Mandy Morgan and Antonia Lyons aim to understand how people make sense of terminal illness and euthanasia by analysing their narration from a Foucauldian perspective. Céu Sá and Abílio Oliveira suggest a closer link between health care professionals and people with rheumatoid arthritis for deeper understanding of the patients’ needs and feelings. Louise Reagan argues that both health care professionals and patients need more time to understand the chronic illness. Stories can be told with visual aids and online, too. Ligia Lima and Marina Lemos invite children living with cancer to illustrate their experiences through drawings. Felicity Horne also finds body maps are valuable ways for us to understand people with chronic illness. Amir Cohen-Shalev and Esther-Lee Marcus compare mainstream and non-mainstream Alzheimer’s films in their expression of illness narrative. Brenda Foley finds there is a group of people who prefer passing their chronic illness in public to avoid stigmatisation. Peta Cox analyses the autobiographies and Internet postings by Australians with mental disorders and discovers the tension between the advantages and limitations of the discursive writing strategies adopted by them. In practice, Patricia Fennell, John Esposito and Anne Fantauzzi propose five capacities as tools to help clinicians and their clients cull prior experiences for better assessment of present circumstances and to create innovative ways to

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__________________________________________________________________ respond to change caused by chronic illness. Zaeema Riaz, Riaz Ahmad and Sarwat Jahan Khanam emphasise social support for self-esteem of chronically ill patients. Tatiana Piccardi suggests that the cure for chronic illness needs to be individualized and to let the patients find their own way of exercising their humanity with dignity. Similarly, Sally J. Giles and Penny Rhodes do not think there could be a one-fits-all treatment approach for chronic illness after they interviewed both professionals and patients using care planning for diabetes. Marjan Kljakovic argues that it should be the lay people to decide whether they are healthy or ill in chronic disease, but not the general practitioners. Each of these authors present narratives informed by diverse disciplines, cultures, and personal experiences in making meaning of chronic illness. These stories are just a start, and we look forward to your participation.

Notes 1

Robert Fulford, The Triumph of Narrative (New York: Broadway, 2000).

Bibliography Fulford, Robert. The Triumph of Narrative. New York: Broadway, 2000.

Section 1 The Traditional Stories

Chronic Illness Interpreted in ‘Inner Canon of Yellow Emperor’: Why Is It Neglected? Zhenyi Li Abstract Chronic illness is not new to any of the world’s culture. However, diverse interpretations of and therapies for chronic illness are usually suppressed by biomedical medicine. For example, the Chinese experience-based interpretation of and therapies for chronic illness recorded in the classic ‘Inner Canon of Yellow Emperor’ are depreciated by the prevailing evidence-based epistemology of current health care theories and practices. This chapter points out that (a) chronic illness is now narrowly believed to be a physical dysfunction and can only be cured with biomedical intervention; (b) communicable and behavioural change prevention approaches are subsequently marginalised; and (c) patterns and goals for cure and rehabilitation that are alternative to aggressive biomedical intervention are neglected. As a result, people tend to neglect physiotherapy, dietary rehabilitation, emotional tuning, relationship harmonisation, and temperate exercise which were emphasised in the ‘Inner Canon of Yellow Emperor’ as cure approaches for people with chronic illness. Noticeably, most of these approaches require less financial, governmental, and social services and investment. This can make one wonder what could be behind the ‘war’ against chronic illness guided by the biomedical interpretation, and who would be benefited from the ‘war’ propaganda? The fact that diverse interpretations of chronic illness and their associated therapies have been banished by biomedical medicine from health care systems in many countries within the last century is arguably a conspiracy led by dominant pharmaceutical, financial, governmental, social welfare, and health care institutions. However, such a bias seriously impacts at least four aspects related to chronic illness: (1) communication between care givers and receivers; (2) the relationship between illness interpretation and culture; (3) core values related to health care; and (4) choices in every person’s life. Key Words: Chronic illness, interpretation, Inner Canon of Yellow Emperor, health communication, medical sociology. ***** 1. Chronic Illness: Multiple Ways to Interpret Let each individual interpret and even define his or her bodily experiences, including chronic illness. Does this notion make sense to you? Even so, it may not be popular in today’s society. Life is separated from illness in this society. People let professionals to interpret their illness. In other words, we may be responsible for our chronic illness, but not authorised to interpret or define it.

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Chronic Illness Interpreted in ‘Inner Canon of Yellow Emperor’

__________________________________________________________________ Nevertheless, our ancestors documented concepts, interpretations, and lifestyles that resonate with this notion. For example, ‘Inner Canon of Yellow Emperor,’ a classic health care book in Chinese, records not only the way how ‘Yellow Emperor,’ a pseudonym of a group of scholars, interprets health and illness, but also the rationale for their interpretation. The motivation to write down this book, ‘Yellow Emperor’ explains, is to ‘let each ordinary person to interpret illness and reach harmony.’ 1 In the book, ‘Yellow Emperor’ says that health and illness co-exist and they need to be balanced. 2 Illness is neither possible nor necessary to eliminate. 3 Chronic illness leads to a lifestyle modification; and one cannot return to the life before getting ill even after the illness is balanced. 4 Are not these statements incredibly valuable for us to review, particularly in today’s world where dominant interpretation on chronic illness hardly leaves any space for a different voice? Is it not nice to return the authority of illness interpretation back to ‘ordinary people’? Therefore, the goal of this chapter is to compare selected statements from ‘Inner Canon of Yellow Emperor’ with prevailing practice in western society on chronic illness to make a clear argumentation that it is crucial to acknowledge the reality and necessity of the coexistence of multiple interpretations of chronic illness. ‘Inner Canon of Yellow Emperor’ and its interpretation on chronic illness are used here only to exemplify diverse voices on chronic illness. I have neither intention nor ability to introduce, explain, or translate each chapter of ‘Inner Canon of Yellow Emperor’ in this chapter. The book has 162 chapters. It was translated into English as well as many other languages. It covers topics from philosophy, health, lifestyle, illness, cure, acupuncture, and medicine. I will only address viewpoints on chronic illness from five particular chapters: 1, 6, 127, 130 and 147 in this chapter. Furthermore, this chapter aims to discuss the reality and necessity of the co-existence of multiple interpretations of chronic illness. Any extensive promotion on a single voice ironically counters the purpose of this chapter. I choose chronic illness as the focus in this chapter for three reasons. First, chronic illness has reached epidemic proportions in poor as well as rich countries, in the past as well as now. Chronic illness is permeating world cultures at an unprecedented rate. 5 In other words, chronic illness is not limited to certain cultures, countries, eras, or socio-economical classes. It is affecting everyone in the world, directly or indirectly. Therefore, chronic illness must have been interpreted in many ways by many people differently or similarly. It is an ideal representative for scholars to examine and compare how our bodily experiences such as chronic illness are interpreted across national, cultural, political, economical, and other boundaries. Another reason of focusing on chronic illness is that these conditions are often related to life-style, individually and/or collectively. Smoking, for example, is often viewed as a cause for chronic illness including heart disease, high blood

Zhenyi Li

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__________________________________________________________________ pressure, and cancer. But smoking as a choice of life style can be argued as common as coffee drinking, which also brings biochemical changes to a body. In some communities, exchanging cigarettes is part of business protocol to establish trust and closer interpersonal relationship. Hence, convincing these people to alter their smoking life-style for the sake of chronic illness prevention is obviously hard to achieve. It is different from promoting hand washing to prevent epidemic diseases like flu, which is also a life-style change but is easy for many communities to make. In many cultures, a person who leads a sedentary life is not viewed as vulnerable to chronic illness because these people value and respect jobs requiring less active physical motions. In short, chronic illness is more personal, cultural, and life-style related than epidemic diseases. This again makes chronic illness an ideal representative for medical sociology studies. The third reason is related to current development in medical sociology studies. Also known as sociology of health and illness in UK and Australia, medical sociology are scholarly inquiries on the socio-cultural dimensions of medicine, health, illness, and disease. 6 Chronic illness, a bodily experience, according to medical sociologist Deborah Lupton, can be interpreted from at least three different perspectives: functionalist, political economy, and social constructionist. 7 ‘Inner Canon of Yellow Emperor’ presents the fourth perspective: dynamic co-existence, which is worth comparing with those three mentioned above. 2. Chronic Illness: Dynamic Co-Existence Interpretation In general, external coldness is believed to the cause of illness in ‘Inner Canon of Yellow Emperor.’ If the coldness stays in the body, it ‘forms chronic illness.’ 8 ‘Yellow Emperor’ conceptualises all sorts of chronic illness as dynamic coexistence of a body and the coldness inhabited in the body. The only difference is the location where the coldness resides: skin, muscle, abdomen, bone, or other places in a body. The coldness stays there and refuses to leave. That is why chronic illness is a permanent experience that a person has to consider a harmonious coexistence with that long-term residing coldness. A dynamic co-existence is inspired by observing the nature around us. 9 Nothing will disappear in this world. We do not see them just because they transform into another existence or move to another place. Therefore, good or bad, preferred or hated, have or have not, all of these are interrelated, interdependent, and interchangeable like ‘yin’ and ‘yang.’ A wise person knows how to balance ‘yin’ and ‘yang.’ Illness occurs when the harmonious co-existence loses the balance. However, at each stage of chronic illness, the balance could be restored; the same as nature achieves harmony every time after disorder. 10 Medication and acupuncture are necessary interventions though not the ultimate cure. They help a person to reach new balance of co-existence. They do not and cannot get rid of the

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Chronic Illness Interpreted in ‘Inner Canon of Yellow Emperor’

__________________________________________________________________ illness. It is the law of nature. And applying medication and acupuncture shall obey this law. Like a tree after storm, the broken branch cannot be added back. A person with chronic illness cannot return to his or her previous condition. 11 Instead, the scar of the broken branch will ‘stay’ there for a long time, so as the chronic illness in a body. The tree, however, achieves new balance after the storm. People can do the same with their chronic illness because it is the law of nature. Caregivers need to respect this law of nature. 12 Caregivers may or may not have profound knowledge in medicine. However, they need to respect the law of nature by observing the external and internal environment that person with chronic illness resides. They shall not disturb the co-existence of ‘yin’ and ‘yang.’ They can only help the person with chronic illness to pursue new balance. There has not been any success by altering the law of nature. 3. Comparison with Other Ways of Interpretation The dynamic co-existence interpretation by ‘Inner Canon of Yellow Emperor’ is different from the three western medical sociology perspectives: functionalist, political economy, and social constructionist. A comparison can help us to figure out why this interpretation is neglected as well as what we can learn from it. Chronic illness is usually regarded as a social burden or even stigmatised as a personal shame in today’s western societies. 13 This is a typical discourse from functionalistic perspective. People with illness are supposed to be less productive than ‘healthy’ social members. Therefore, this deviance has to be fixed as soon as possible, no matter if chronic illness is possible to be ‘fixed’ in a short period of time or can be cured at all. From political economy perspective, chronic illness is profitable to the privileged group who leads all members in the society to focus on using drugs and medical technology to treat it. 14 Powerful pharmaceutical and other medical institutes are viewed as social control agencies executing moral punishment to the disadvantaged in lower socio-economical class. Social constructionist medical sociologists are followers of Foucault and Derrida’s post-modern/post-structuralist studies. They view chronic illness as the inevitable product of social relations and subject to change. As socio-cultural constructed phenomena, chronic illness can be interpreted in many ways. In their eyes, the biomedical approach is grounded on the cultural assumption prevailing in modern western societies since the Enlightenment Movement. In other words, the power of medicine has gradually convinced almost every member in western societies. 15 A major difference from functionalist perspective is that ‘Inner Canon of Yellow Emperor’ never stigmatises chronic illness. It is not regarded as a shame or punishment to a person. The external coldness is sometimes called ‘evil air.’ However, ‘Inner Canon of Yellow Emperor’ says that evil air is part of the world.

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__________________________________________________________________ It cannot be eliminated. A person feels ill when the evil air is not positioned correctly in the body. Once it is re-located by adjustment and re-balancing, the person feels better. 16 This interpretation does not marginalise or stigmatise the person with chronic illness. Instead, the motivation of ‘Yellow Emperor’ to write this book is to disseminate such notions for an inclusive and harmonious world. 17 Seeing through political economy lens, it is interesting to observe that the pseudonym ‘Yellow Emperor,’ which refers to the first emperor of China, does not carry any ‘political’ discrimination against his subjects in this ‘Inner Canon.’ This certainly indicates that the authors of this book were not the privileged or viewed themselves as the privileged. This book has been freely circulated in China for centuries. It has not been owned, patented, or controlled by a college, association, or government. Many therapies and herb medicine recorded in the book hardly cost anything. There is no evident economical motivation. ‘Yellow Emperor’ suggests that health care is a practice every ordinary person needs to know. 18 The ownership for interpretation on chronic illness belongs to each ordinary person. How different it is from increasing professionalisation of health care in modern western societies! ‘Yellow Emperor’ could have agreed with social constructionists on the inevitability of chronic illness if they met. However, ‘Yellow Emperor’ would have been disappointed when seeing biomedical approach is another inevitability that social constructionists are inclined to illustrate. ‘Yellow Emperor’ has the passion to bring people back to the law of nature by observing the nature such as a tree after storm. 19 In the ‘Inner Canon’ there are dozens of passages on philosophy of life, dietary rehabilitation, emotional tuning, relationship harmonisation, and temperate exercise. Social constructionists seem to have narrower scope and limited interest and tend to attribute everything to socio-cultural construction. Last, the notion of dynamic co-existence is not seen in any of these three perspectives. It is understandable because many Western interpretations are based on an ‘either-or’ linear logic, while some Eastern ways present a ‘both-and’ mindset. 20 Illness does not have to disappear. The disadvantaged need the privileged. Multiple interpretations can co-exist. These statements can look weird to one culture, but acceptable to another. A typical example is western biomedical practices were not resisted but co-existed in China and many other Asian countries while Asian therapies and medicine hardly have any space to exist in many European and North American countries. It is not a question of tolerance. It is simply the difference between mindsets. The game of ‘Go,’ originally from China, emphasises co-existence. A skilful player is able to maximise co-existence with the opponent. The extinguishing of opponent means the end of interdependence between ‘yin’ and ‘yang,’ the same philosophy as ‘Inner Canon of Yellow Emperor’ presents on chronic illness. A Western chess player, on the contrary, aims to checkmate. The ultimate cure is supposed to be a complete removal of the cancer, an elimination of HIV, or a return to normal level of blood sugar. In fact, the three medical sociological perspectives do not co-exist, either. 21

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Chronic Illness Interpreted in ‘Inner Canon of Yellow Emperor’

__________________________________________________________________ 4. Why Neglected? Besides the intolerance of multiple interpretations in a one-track mind, there are other reasons for the neglect of ‘Inner Canon of Yellow Emperor.’ An exploration of these reasons can also help us to recognise a possible conspiracy behind biomedical interpretation of chronic illness. First, if ‘Inner Canon of Yellow Emperor’ were recognised, people could have awakened to the ownership of chronic illness interpretation and started to reconnect life and illness. Both ownership and the interconnection between life and illness have been taken away by highly professionalised biomedical oligopoly. A person could have difficulties to find proper vocabulary to name his or her illness and to describe the feeling in the oligopoly. 22 It is not exaggeration that many of us are aphasiac in front of biomedical professionals when they name chronic illness more and more complicated and abstract. ‘Inner Canon of Yellow Emperor,’ on the contrary, provides lay language vocabulary for chronic illness and advocates individual ownership of illness interpretation. Second, therapy and cure based on dynamic co-existence do not cost as much as present biomedical approach on both financial and social resources. On one hand, this might mean a loss of business or profit for pharmaceutical and other medical institutes. On the other hand, government or private insurance may not like losing revenue from biomedical practices either. However, ‘Inner Canon of Yellow Emperor’ has been practiced over 2,000 years in China. It has not required or relied on public or private investment as biomedical approach does. Would it not be shocking when a person with chronic illness becomes aware that it costs and needs much less resources for the same, if not better, result? Third, if ‘Inner Canon of Yellow Emperor’ were recognised, it could have brought changes in our personal and social life. As mentioned earlier, the relationship between illness interpretation and culture could have been changed. Subsequently, the communication between physicians and patients would be different. They should be renamed as care givers and receivers. The givers need to respect the authority on chronic illness of the receivers. The givers, at the same time, do not need to be physicians. That also means there are more care givers than we have now. In addition, people with chronic illness have more choices due to the dynamic co-existence mindset. For example, a person with cancer does not have to fight the ‘war’ by attending side-effect loaded chemotherapy. These changes will carry out the fundamental change in core values related to health care. 5. Conclusion It is too early to laugh because the neglect of ‘Inner Canon of Yellow Emperor’ is far beyond resolved at this moment. Like stated earlier, a one-track mind can hardly accept anything originated from a culture embracing co-existence. Even ordinary people in the western society, being so used to biomedical treatment, have

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__________________________________________________________________ negative attitudes or reactions towards ‘weird’ therapies including Chinese medicine: fear, scepticism, and resistance. 23 At the same time, we shall notice that ‘Inner Canon of Yellow Emperor,’ along with many other health care thoughts and practices, is often misinterpreted as holistic therapy. This is risky. From a review on the history of ‘standardising’ ‘complementary / alternative medicine’ (CAM), one can see clearly the CAM has been interpreted in biomedical approach, no matter how different they are. 24 Therefore, Darwin warns us that the biomedicalised CAM may no longer be authentic. 25 Last, at the birthplace of ‘Inner Canon of Yellow Emperor’ - China, we observe a decline of traditional Chinese medicine and a possible oligopoly of modern western biomedicine. It is very possible that ‘Inner Canon of Yellow Emperor’ is forgotten by the Chinese before it is recognised in the West. In sum, the neglected ‘Inner Canon of Yellow Emperor’ illustrates the extinguishing of socio-cultural diversity in the health care eco-system, which could sadly be a chronic illness in our life.

Notes 1

There are many different translations of ‘Inner Canon of Yellow Emperor.’ This chapter chooses not to refer any particular publication for verses quoted here. All translation is done by the author from original Chinese version. This quotation is from Chapter 130, Verse 2. 2 Chapter 1:3. 3 Chapter 127:1. 4 Chapter 127:3. 5 Nancy Waxler-Morrison, ‘Introduction’, in Cross-cultural Caring: A Handbook for Health Professionals in Western Canada, eds. Nancy Waxler-Morrison, Joan Anderson and Elizabeth Richardson (Vancouver, BC: UBC Press, 1990), 6. 6 Deborah Lupton, Medicine as Culture: Illness, Disease and the Body in Western Societies (London, UK: SAGE, 2003), 2. 7 Ibid., 7-12. 8 Chapter 147:7-10. 9 Chapter 6. 10 Chapter 147:25. 11 Chapter 127. 12 Chapter 130. 13 Lupton, Medicine as Culture: Illness, Disease and the Body in Western Societies, 7. 14 Ibid., 10. 15 Ibid., 12.

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__________________________________________________________________ 16

Chapter 6. Chapter 130. 18 Chapter 1. 19 Chapter 137. 20 Edward T. Hall, Beyond Culture (New York: Anchor Books, 1977), 9. 21 Lupton, Medicine as Culture: Illness, Disease and the Body in Western Societies, 12. 22 Ibid., 60. 23 Patricia Geist-Martin, Barbara Sharf and Natalie Jeha, ‘Communicating Healing Holistically’, in Emerging Perspectives in Health Communication: Meaning, Culture, and Power, eds. Heather M. Zoller and Mohan J. Dutta (New York: Routledge, 2008), 100-103. 24 Ibid., 87-90. 25 Thomas J. Darwin, ‘Intelligent Cells and the Body as Conversation: The Democratic Rhetoric of Mindbody Medicine’, Argumentation & Advocacy 36 (1999): 35-49. 17

Bibliography Darwin, Thomas J. ‘Intelligent Cells and the Body as Conversation: The Democratic Rhetoric of Mindbody Medicine’. Argumentation & Advocacy 36 (1999): 25–49. Geist-Martin, Patricia, Barbara Sharf, and Natalie Jeha. ‘Communicating Healing Holistically’. In Emerging Perspectives in Health Communication: Meaning, Culture, and Power, edited by Heather M. Zoller, and Mohan J. Dutta, 85–112. New York: Routledge, 2008. Hall, Edward T. Beyond Culture. New York: Anchor Books, 1976. Lupton, Deborah. Medicine as Culture: Illness, Disease and Body in Western Societies. London, UK: SAGE, 2003. Waxler-Morrison, Nancy. ‘Introduction’. In Cross-Cultural Caring: A Handbook for Health Professionals in Western Canada, edited by Nancy Waxler-Morrison, Joan Anderson, and Elizabeth Richardson, 3–10. Vancouver, BC: UBC Press, 1990.

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__________________________________________________________________ Zhenyi Li, PhD, is an Associate Professor teaching Intercultural Communication at Royal Roads University in Victoria, Canada. His research focus is on intercultural health communication.

Sublime Illness: Friedrich Schiller’s Chronic Lung Disease and the Concept of the Sublime Carmen Bartl Abstract In 1791, at the age of 32, the famous German writer, Friedrich Schiller contracted tuberculosis. He was plagued by a chronic pulmonary disorder for the rest of his life. It is in that time and under the sign of chronic suffering - until his death in 1805 - that Schiller produced some of his major theoretical works. This chapter analyses the philosophical and literary mappings of Schiller’s lung disease in the writer’s personal letters. More importantly, it argues that the experience of his chronic illness has influenced the development of Schiller’s theory of the sublime as exposed in his essays on the sublime, of 1793 and 1801.The chapter is concerned less with the direct manifestations of the illness, and more with the way in which Schiller weaves the bodily experience of his chronic suffering into the body of his philosophy; with the way literature and philosophical thinking is transformed by, or imprinted with the pattern of the disease in question. For Schiller, as in the case of other thinkers who developed their main ideas while suffering from chronic illnesses (like Friedrich Nietzsche or Immanuel Kant), philosophy is also a somatic affair and writing means implicitly writing the illness, even when the text is not openly pathographical. Lying at the very intersection between bodily experience and its intellectual, philosophical and literary processing, his lung disease influenced the way Schiller shaped his characteristic philosophy, which thus bears the mark of a particular bodily experience. Key Words: Friedrich Schiller, sublime, sublimation, philosophy, pathography, illness, representations of illness. ***** 1. The Writer and His Illness Friedrich Schiller, the famous German poet and philosopher and peer of Goethe, was plagued for the last 15 years of his life by what was believed to be a chronic infection of the lungs. The experience of living with this disease has had a notable influence on his writing and thought during that time, particularly - as I argue - on the development of his philosophy of the sublime. In May 1805, when the philosopher died of an acute bout of his multifaceted illness, the autopsy recorded the finding of an ‘inflamed, porridge-like and totally disorganised’ lung, a heart ‘without muscular substance,’ the gallbladder and spleen ‘unnaturally enlarged,’ the kidneys ‘dissolved in substance and completely grown together.’ Doctor Huschke, one of the doctors in whose care he had been,

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__________________________________________________________________ added to those findings his personal comment: ‘In these circumstances one has to wonder how the poor man was able to live for so long.’ 1 Yet Schiller did live not only long, but also intensely. From the onset of his illness in 1791, at the age of 32, Schiller managed to lead an extremely active intellectual life, as well as a constant social life. In this time span, his wife Charlotte gave birth to four children; social gatherings at their house were part of the weekly routine; the writer himself had to keep in touch with his editors, his noble sponsors, as well as his peers from the German literary world by writing thousands of pages of letters; and yet for all the distraction that comes with having a large family and being an active member of bourgeois society, it is in these 15 years that Schiller produces his most important literary works, as well as his crucial philosophical writings. He works, nevertheless, under the sign of his on-and-off illness; he is conditioned in the efficiency and productivity of his work by the bouts of the illness, which occur at least once in a couple months and last sometimes for only several days, and sometimes for weeks at a time. As I will argue, the writer is influenced by the experience of his illness also to some extent in the content of his philosophy: namely in his developing of the concept of the sublime. As to what his illness exactly was, I should point out that due in part to limitations to 18th century medical diagnostication, it is typically very difficult to provide a diagnosis in today’s terms solely from the data that can be extracted from Schiller’s own account, as well as the accounts provided by his friends and even doctors. There are, however, two diagnosis attempts available in secondary literature. 2 First, one presupposes a progressive tuberculosis affecting the lungs and bowels, which started with a primary infection during his school years, and which ultimately led to his death. Second, one presupposes a pneumonia that started 1791 with an abscess, relapsing pneumonia bouts and a perforation of the diaphragm with pneumonia entering gastric space and causing colic-like narrowing of the bowels. Researchers suggest that whatever he is presumed to have had could have been healed with an antiviral prescription today. 3 But in the absence of antibiotics at the time, Schiller had to cope with his chronic infection until his death. In spite of the weakness caused by suffering, he writes sometimes several letters a day to his editors, friends and family; other times, however, a few weeks go without any sign from him. In his letters, one can find repeated references to his recurring illness: ‘Headaches and toothaches, which have been plaguing me for several days, have bereft me of any disposition for a judgment on poetic works;’ 4 ‘For the last 14 days my cramps have been plaguing me so badly that I could not set a single feather on paper;’ 5 ‘Also I have suffered a lot again in the past 3 weeks from my illness, which has kept me from writing back.’ 6 Being modestly documented, and mostly in connection with work, the illness appears to have been something the author was rather embarrassed to admit. Schiller does not hide his illness, but he constantly refuses to dwell on it. A single mention like ‘I have not

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__________________________________________________________________ been well’ would mostly be followed by a five page letter about other issues. The accounts of momentary crises (which usually last several weeks) are remarkably similar, if not in content then in form. In the beginning of this week I have been down with a bad case of vomit and diarrhoea and I was very afraid I might become seriously ill. … In any case this has messed up my head for the entire week, and caused a halt in my activity, which is interrupted so often anyway. 7 I have been set back in my work again by almost 10 days by a throat pain that circulated in my household … If only I had 10 weeks of uninterrupted health, it [“Wallenstein”] would be ready… 8 The illness does not have the right to a face of its own. It is only being painted with a view to justifying not having written back in a long time, or not having had the ability to work. Often it is the catarrh and the cough that is plaguing him; other times back pain and / or fever, or gastrointestinal issues, or all of those together. Whatever the symptoms are, the most important thing about them for Schiller seems to be that they all keep him from work. Moreover, Schiller is also surrounded by others’ suffering. Most members of his family are as prone to illness as he is. In his letters he recounts not only the different bouts and symptoms of his own illness, but also of his children, his siblings, his parents and his wife. Charlotte goes through her four pregnancies suffering from cramps and pains; after the birth of one of the daughters, she succumbs to a fever which makes Schiller think he will lose her. The children are often sick as well. Viral infections, when they come, hit his whole household, making it difficult for him to indulge in describing his own suffering. He once even calls his home a ‘Lazarett’, a military hospital. 9 Perhaps also due to such circumstances, he is very cautious and lapidary when sharing details about his own illness in his letters. Almost every time he mentions being or having been ill, he feels compelled to add the piece of information about how that particular bout of illness impacted his ability to work. The stronger the illness, the more unable he is to perform his work. The body is his enemy, as Schiller has to learn to live with it while continuing to produce extraordinary works. Indeed, in his thirties, we find Schiller as an established writer. He may not be very rich, but numerous sources provide him with the ability to support an evergrowing family; among these sources is also his own writing - in a time when, as always, being a writer did not count among the profitable professions. Schiller was aware of his rank as a writer. He was sure he would be read after a few centuries, and he was also able to tell with astounding accuracy who else -

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__________________________________________________________________ from among his contemporaries and friends - would still be read and who would not. He was aware that he had been given a genius which he had to express, and at the same time he was aware of his limited resources of time and energy to do so resources that were being greatly diminished by his constant proneness to falling ill. When, in 1801, he writes to Cotta, one of his editors: ‘The best and the accomplished works require leisure, and I can only do so much given my changing state of health. One single significant new work is all I can deliver in one year…’ 10 the writer means, however, one dramatic work. His theoretical writings are considered as ‘happening’ on the side of his poetry and dramaturgy. 2. The Sublime It is around this time that the author develops his theory of the sublime, and it is my opinion that in the structure of Schiller’s experience of the sublime we may recognise the contours of his struggle with illness. Already in Antiquity, the sublime was understood as a force of nature that cannot be held in check by man, and to which man can only be a bystander, a viewer, or a powerless, overwhelmed subject. 11 Any human intervention or attempt to fight it would have been doomed to failure: as in the case of a great storm at sea, an erupting volcano, an earthquake or an avalanche. From Antiquity onwards though, the concept of the sublime has undergone a couple significant changes. The first most notable step was performed by the German Enlightenment philosopher Immanuel Kant, who lends a new dimension to the concept of the sublime. Man is firstly impressed and daunted by nature; but then, says Kant, man can rise above the given force of nature by affirming his spiritual superiority. This moment of affirmation becomes the most important one in the dynamics of the experience of the sublime. In this form, the concept is inherited by Friedrich Schiller, who makes it into a main concept of his aesthetic theory. Schiller writes in a Kantian vein that the sublime is the effect of three consecutive things: 1) an objective physical power; 2) our own subjective physical powerlessness; 3) our own subjective moral empowerment or superpower. 12 What for Kant had been valid in the realm of ethics and even of metaphysics of morals, will be carried over by Schiller into the field of his theory of art. But it will also define a pattern for concrete mental action to be performed in an endangering situation, for instance, in coping with his own chronic illness by him. But how was Schiller able to use a mental pattern drawn from theoretical philosophy and apply it in his own personal experience? And how did his personal experience in turn enrich his philosophy? In spite of recurring bouts of fever, Schiller did not locate his illness within himself. He did hold the belief that he had a proneness to fall ill, but every time this happened, it seemed to him to have another cause. Significantly, all causes were perceived as coming from outside: the current epidemic, the cold, the

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__________________________________________________________________ weather. Especially the weather, as a metaphoric messenger of nature, since the weather - winds, the draught, the cold, the heat - constitutes that part of nature and its coercive aspect (the induced cold and cough) that has permeated the philosopher’s body and is acting inside of it. Thus Schiller very often blames worsening of his state of health on the weather: ‘The sultry heat of last week has affected me greatly, and perhaps a cold has also contributed to the fact that for the last 8 days I have been feeling ill, have had fever and have been afraid of a serious illness to come;’ 13 to his friend Goethe he confesses: ‘The bad weather we are having now is afflicting me greatly, and I have lost several days of work again to the cramps and insomnia;’ 14 or, also to Goethe, on a more positive note: ‘What with the better weather, I am also feeling better and more active… .’ 15 This trope is not an accidental choice for his explanations. The weather is one of the most typical ways in which nature, in the sense of physical natural phenomena, makes itself manifest. Storms, avalanches, thunderstorms - elements that are at home in Schiller’s descriptions of the sublime - are all weather-related phenomena. And so it is a part or a hypostasis of this power of nature that Schiller imagines to be fighting - only within his body. Thus his art, his literary texts which he produces in the brief pauses between one bout of illness and the other, are at the same time sublime acts, where his mind shows itself to be free from the coercion of the natural phenomena that illness constitutes. It becomes now apparent how come he does not need to dwell on descriptions of the illness itself: the image of the illness returns in his philosophy, as a shadow, as an already defeated shadow in the experience of the sublime. The sublime thus gives a negative measure, a measure of absence of Schiller’s illness. The ‘enemy’ is invisible, but the enemy leaves an indent in his work, the contours of which can hardly be mistaken. 3. The Freedom Does Schiller, however, believe that his illness is really defeated when turned into its shadow, when made invisible? It is worth noticing that the sublime as a concept has never indicated - neither in Antiquity nor with Kant or Schiller - that one has actually harnessed or gotten a grip on the rampant forces of nature. The rise is only the result of a freedom ‘in spirit,’ which in practice means having become indifferent to these unleashed forces, not being emotionally steered by the fear of them anymore, not being controlled by them in one’s own decisions and actions. Schiller’s concept of freedom of the spirit or of reason, vis-a-vis nature, means that the motivation and drive for one’s own actions is to be found not outside of oneself, that is, not outside of one’s own spirit, but within one’s own spirit. By rising above nature, thanks to reason, one takes the decisions for one’s own actions into one’s own hands. The struggle for Schiller, then, must be not about defeating the illness - but about rising above being conditioned by it. As long as Schiller still manages to perform his

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__________________________________________________________________ work, the agency of his own ‘spirit’ is rescued from the subjection to nature. This thought is already to be found in his essay ‘On the Sublime,’ where Schiller writes: ‘Great is he who overcomes the terrible. Sublime is he who, even when defeated, will not let himself be terrified by it.’ 16 As Georg Braungart has argued, 17 it seems that both Kant and Schiller wished to uphold an anthropological perspective facing the growing threat that was coming from the fast-developing field of natural sciences like geology: the threat of man becoming a minuscule being devoid of importance and dignity, in a vast, infinite space. In a time when it was becoming clear how old the Earth really is and how infinite the space, philosophers like Kant and Schiller attempted to provide mankind - and specifically, the human individual - with one last unalienable advantage: the advantage of freedom gained through reason. The nature from which we human beings had to make ourselves free was for Kant rather physical nature in her most violent manifestations, such as the philosopher himself had experienced them, in the series of earthquakes that shattered the city of Lisbon and a large part of Europe in 1755. 18 Schiller, in turn, applied Kant’s method to individual processes of decision-making and action while living under the siege of illness. It can arguably be said that it is via Schiller that ultimately Sigmund Freud is receiving the concept of sublimation, developing his own psychoanalytical theory on it. Sublimation - with Freud - essentially means making use of an excess energy, by assigning this energy a goal: for instance, the creation of a work of art. If sublimation fails, that excess energy contaminates the patient, producing neurosis. Schiller even literally calls one of his works a sublimation, when writing to his friend Goethe: ‘Shall I, too, this year be bestowed with the joy of sublimating the best of my nature in a work, as you have done with your own nature.’ 19 Thus Schiller, who wanted to rise above the conditioning of his own body which was prone to falling ill, proves to be Freud’s literary predecessor, providing the template for Freud’s later theory of neurosis and sublimation. For Schiller, who was no naïve believer in shadows of his own making, the experience of the sublime and the rising above bodily conditions remains an ideal. Though it has to be strived for, it will rarely - if ever - be realised fully. Schiller writes about one of his poems: ‘This poem is little more than a natural sound...and a voice of pain...It is the true image of human life, the Rhine river disappearing in the sand because of suffering.’ 20 Around the same time when he wrote this poem, in 1794, he mentions in a letter to Goethe: I will hardly have the time to complete in myself a great and general revolution of the spirit; but I will do the best I can, and when finally the building collapses, perhaps I will have rescued from the fire what is worth rescuing. 21

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__________________________________________________________________ Like the Rhine River from the poem, Schiller the man will also ultimately dissipate. But by the time this happens, his statement of 1794 will have become, I believe, an accurate description of what he strove for and achieved: ‘I will do the best I can, and when finally the building collapses, perhaps I will have rescued from the fire what is worth rescuing.’

Notes 1

Rüdiger Safranski, Friedrich Schiller oder Die Erfindung des Deutschen Idealismus (München: Carl Hanser, 2004), 11. 2 Dietrich von Engelhardt, ‘Schillers Leben mit der Krankheit im Kontext der Pathologie und Therapie um 1800’, in Zeitschrift für Ästhetik und Allgemeine Kunstwissenschaft, 6th special edition: Schillers Natur. Leben, Denken und literarisches Schaffen, eds. Georg Braungart and Bernhard Greiner (Hamburg: Felix Meiner, 2005), 62. 3 Ibid. 4 Friedrich Schiller, Werke und Briefe in zwölf Bänden, Vol. 12: Briefe II: 17951805, ed. Norbert Oellers (Frankfurt am Main: Deutscher Klassiker Verlag, 2002), 11. 5 Ibid., 28-29. 6 Ibid., 48. 7 Ibid., 353. 8 Ibid., 369. 9 Ibid., 218, 314, 369, 622, 630 and 693. 10 Ibid., 581. 11 For instance by Pseudo-Longinus (approx. 40 BC.) See also Dietmar Till, Das Doppelte Erhabene: Eine Argumentationsfigur von der Antike bis zum Beginn des 19. Jahrhunderts (Tübingen, 2006). 12 Friedrich Schiller, ‘Vom Erhabenen’, in Schillers Werke. Nationalausgabe. Zwanzigster Band: Philosophische Schriften. Erster Teil, ed. Benno von Wiese (Weimar: Hermann Böhlaus Nachfolger, 1962), 186. 13 Schiller, Briefe II, 305. 14 Ibid., 432. 15 Ibid., 401. 16 Schiller, ‘Vom Erhabenen’, 185. 17 Georg Braungart, ‘Die Geologie und das Erhabene’, in Zeitschrift für Ästhetik und Allgemeine Kunstwissenschaft, 6th special edition: Schillers Natur. Leben, Denken und Literarisches Schaffen, eds. Georg Braungart and Bernhard Greiner (Hamburg: Felix Meiner, 2005), 176. 18 Ibid., 162. 19 Schiller, Briefe II, 358.

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Ibid., 53-54. Friedrich Schiller, Letter no. 339 to Goethe, August 31st, 1794, in Werke und Briefe in Zwölf Bänden, Vol. 11: Briefe I: 1772-1795, ed. by Georg Kurscheidt (Frankfurt am Main: Deutscher Klassiker Verlag, 2002). 21

Bibliography Bethge, Wolfgang. Das Energische Prinzip. Ein Schlüsselbegriff im Denken Friedrich Schillers. Heidelberg: Universitaetsverlag C. Winter, 1995. Braungart, Georg. ‘Die Geologie und das Erhabene’. In Zeitschrift für Ästhetik und Allgemeine Kunstwissenschaft. 6th Special Edition: Schillers Natur. Leben, Denken und literarisches Schaffen, edited by Georg Braungart, and Bernhard Greiner, 157– 176. Hamburg: Felix Meiner, 2005. Engelhardt, Dietrich. ‘Schillers Leben mit der Krankheit im Kontext der Pathologie und Therapie um 1800’. In Zeitschrift für Ästhetik und Allgemeine Kunstwissenschaft. 6th Special Edition: Schillers Natur. Leben, Denken und literarisches Schaffen, edited by Georg Braungart, and Bernhard Greiner, 57–74. Hamburg: Felix Meiner, 2005. Riedel, Wolfgang. Die Anthropologie des Jungen Schiller - Zur Ideengeschichte der Medizinischen Schriften und der ‘Philosophischen Briefe’. Würzburg, 1985. Safranski, Rüdiger. Friedrich Schiller oder Die Erfindung des Deutschen Idealismus. München and Wien: Carl Hanser, 2004. Schiller, Friedrich. ‘Vom Erhabenen’. In Schillers Werke. Nationalausgabe. Zwanzigster Band: Philosophische Schriften. Erster Teil, edited by Benno von Wiese, 171–195. Weimar: Hermann Böhlaus Nachfolger, 1962. —––. Werke und Briefe in Zwölf Bänden, Vol. 11: Briefe I: 1772-1795, edited by Georg Kurscheidt. Frankfurt am Main: Deutscher Klassiker Verlag, 2002. —––. Werke und Briefe in Zwölf Bänden, Vol. 12: Briefe II: 1795-1805, edited by Norbert Oellers. Frankfurt am Main: Deutscher Klassiker Verlag, 2002. Stockinger, Ludwig. ‘“Es ist der Geist, der Sich den Körper Baut”. Schillers Philosophische und Medizinische Anfänge im Anthropologiegeschichtlichen Kontext’. In Zeitschrift für Ästhetik und Allgemeine Kunstwissenschaft. 6th Special

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__________________________________________________________________ Edition: Schillers Natur. Leben, Denken und literarisches Schaffen, edited by Georg Braungart, and Bernhard Greiner, 75–86. Hamburg: Felix Meiner, 2005. Till, Dietmar. Das Doppelte Erhabene: Eine Argumentationsfigur von der Antike bis zum Beginn des 19. Jahrhunderts. Tübingen: Max Niemeyer, 2006. Carmen Bartl is a PhD candidate in the Department of German at New York University working on her dissertation about theories of excess in modernity. Her research often revolves around intersections between literature and the history of medicine, the cultural construction of illnesses and their representations in German literature.

Section 2 The Personal Stories

Mandated Motherhood: Biopsychosocial Aspects of Coping with Infertility Sara Rieder Bennett Abstract Infertility is a chronic biopsychosocial issue that affects approximately one-fifth of the population and represents a major life crisis for many individuals and couples. Childbearing and parenting are considered by many societies to be normalised aspects of adult development, and motherhood specifically may be regarded as a rite of passage to adulthood. Those who are unable to conform to social norms for various reasons may experience internalised shame and be open to negative evaluation, humiliation, and possible violence. 1 As infertility is often a private condition, only its effects are known by those outside the experience, which can lead to identity management strategies on the part of those experiencing infertility and misperception by other individuals. Despite the prevalence and significant distress of infertility, the mental health literature is limited in understanding the experience of living and coping with this condition. Qualitative research has suggested that gender ideologies are related to women’s distress due to infertility. In particular, the motherhood mandate may be one useful theoretical explanation of the potential link between gender ideologies and infertility-related distress, as Russo posited that motherhood has been linked in society to the attainment of an adult female identity. 2 In addition, these social mandates may impact women’s appraisals of their experience of infertility. This chapter seeks to present literature supporting the link between distress and coping related to infertility and the gender ideologies and appraisals of infertility that women may hold. Key Words: Infertility, motherhood, stress and coping, social construction, gender ideologies. ***** 1. Mandated Motherhood Infertility is a chronic biopsychosocial condition which is often diagnosed after a woman under age 35 has not become pregnant following a year of unprotected, well-timed sexual intercourse; within six months if over the age or 35; or she has been unable to carry a pregnancy to term. 3 In many societies, childbearing and parenting are considered to be normalised aspects of adult development and motherhood has been regarded as a rite of passage to adulthood for women in particular. Yet nearly 10 per cent of women experience a reproductive loss each year, including those due to miscarriage, stillbirth, medically-necessary abortion, and infertility. 4 Estimates suggest that infertility may affect between 60 and 80 million individuals worldwide or up to 9.7 per cent of individuals in developing

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__________________________________________________________________ nations and 16.7 per cent in industrialised nations. 5 When considering that one partner in a couple may be diagnosed with infertility, but both are impacted by it, infertility may affect about 20 per cent of couples worldwide. Throughout history, infertility has been conceptualised as due to female factors. However, medical evidence suggests that men and women are equally impacted by infertility at approximately 35 per cent of the total prevalence, 6 while the remaining 20 per cent of cases are attributable to both partners and about 10 per cent to unexplained factors. 7 Though social pressures for parenthood impact both men and women, these pressures are suggested to be greater for women in many societies, and those unable to fulfil expected social roles may experience criticism and stigma. 8 Attitudes toward infertility have often focused on women’s responsibility and seem to shift based on women’s status within a society. In societies with unequal gender roles, such as ancient Hebrew society and the Middle Ages in Europe, infertility was viewed as a divine punishment for women transgressing the laws of marriage. 9 Conversely, pregnancy has been viewed throughout history as a sign of divine blessing. Historically, women have been hanged, persecuted, and denounced as wives when infertility affects a couple, and sexual functions of women have been used as justification for gender inequalities in societies. 10 Though medical evidence now indicates similar prevalence of infertility in both genders, women today continue to be disproportionately affected by unsought advice, pressure, and insensitivity. Terms which have been used as synonyms for infertility include barren, unproductive, wasted, desolate, and ineffectual. Even when male partners are diagnosed with infertility, society continues to view the female partner as the source of the problem and she therefore becomes the target for emotional stigma, in many cases internalising infertility as due to a reproductive and role failure on her part. 11 One must question how women come to carry the burden of infertility, and the greater pressure particularly in androcentric cultures. A theoretical explanation for this process may lie in social constructionist theory. Social constructionism means that we create our understanding of the world and this is achieved through our social interactions. Female gender identity is in many cultures constructed as nurturing and mothering behaviours and there is a bias toward defining women by the role of mother. Bartholet writes, ‘Women are taught at birth that their identities are inextricably linked with their capacity for pregnancy and childbirth and that this capacity is inextricably linked with mothering.’ 12 Motherhood becomes the process by which one gains meaning, social acceptance, psychological adjustment, and attainment of one’s gender and adult roles. Nancy Russo identified this ‘motherhood mandate’ as the social expectation for women’s primary life goal to be bearing and raising children, and that this is considered a necessary step to achieve adulthood. 13 Infertility can then be construed as an obstacle to achieving a desired individual goal, but also as a barrier to achieving adulthood and femininity

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__________________________________________________________________ in society. Furthermore, though infertility is a private medical condition, parenthood or the lack thereof are public and those who do not have children are often devalued in society. Many who experience infertility are likely to engage in identity management strategies to hide their condition due to the social value affixed to motherhood. People are prone to display positive self-images and avoid expression of socially devalued or stigmatised identities, which can limit various forms of support to women with infertility. Infertility represents a borderland in the study of health, though, as defining infertility as an illness has been a more political than scientific discourse. Regardless of its politics, the experience of infertility can cause one to question the functioning of her body and thereby cause one to question notions of health. A woman in a study by Benasutti said, ‘It amazed me that there were so many healthy women walking around who could not get pregnant.’ 14 This individual struggled with a conceptualisation of health which could include barriers to expected developmental milestones. 2. The Borderlands of Infertility Women who are unable to conceive are potentially subject to adverse consequences of stigmatised identity in many cultures, which is well expressed by the word ‘borderland.’ This term can be defined in multiple ways, including references to debated land, frontiers, or being on the fringe of society. When I think of borderlands, connotations which come to mind are of danger, hostility, ambiguity, and a veritable wasteland, terms which have been insensitively identified with infertility. Benasutti discussed how the stigmatisation of infertility leads to marginalisation in society which can overlook the experiences of women and couples, and I believe this can be especially true because of the private nature of infertility, for example, women may be seen as voluntarily childless, but in fact experience infertility. The inability to fulfil an expected and desired developmental task such as childbearing brings about questions of meaning, purpose, and identity. Fernandes and colleagues conducted a qualitative study amongst South African women experiencing infertility and identified multiple sources of shame and ‘spoiled identity’ which these women faced. Women in their study indicated a physical void and disability in that their bodies did not live up to their expectations of functioning. They also discussed their belief that bearing children is a biological right that will take place when planned. When facing infertility, though, these women were instead exposed to negative discourse such as being barren, arid, and lacking control. Women faced a loss of identity and control, emptiness, isolation, and anger, out of which Fernandes and colleagues suggested these women had to make meaning in order to work through their suffering. 15 Though many indicate experiencing distress due to infertility, the severity of distress may vary depending on social constructions related to parenting, children,

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__________________________________________________________________ and gender. Qualitative exploration of women’s experiences of infertility in Bulgaria identified traditional conceptualisations of childless women as dangerous, deviant, and guilty. 16 Despite some modernisation of views, women discussed several aspects of identity which were put into question as a result of infertility. Women tended to internalise views of themselves as incomplete, separate, and defective from others, to the point of seeing their entire identity as infertile. Many stated a desire to be invisible or absent, or worrying that they would become so because they were not mothers. These views spilled over into work and physical identities, in addition to gender and social lives discussed in other studies. Some women began to question the worth of work, particularly when they viewed financial stability as a means of supporting a family. Perceptions of the body as ‘failed’ also tended to transfer to a devaluing of their entire being. In addition, infertility treatments often brought about changes in women’s physical boundaries due to the technical nature and invasiveness of procedures. Overall, women struggled to integrate the new experiences of infertility and childlessness with their expected and anticipated selves, which can be conceptualised as placing women in a borderland experience related to health and identity. 3. Well-Being and Distress Not all women who experience infertility report psychological distress, and inconsistencies in research suggest the potential for mediating and moderating factors in distress. Exploration of factors related to well-being has been more limited than studies which focus on distress; however, understanding psychological and physiological well-being is as important as distress, because it can lessen the stress related to medical treatment and social stigma. The study of distress and well-being in infertility may be approached through Lazarus and Folkman’s stress and coping model which explains stress as the ‘relationship between the person and the environment that is appraised by the person as taxing or exceeding his or her resources and endangering his or her well-being.’ 17 Individuals may experience increased stress when appraising a situation as a significant stressor, or when they believe they do not have the sufficient resources with which to cope with the stressor. In the model, primary appraisals refer to evaluating the situation as a loss, threat, or challenge, while secondary appraisals refer to one’s perceived physical, social, psychological and material resources with which to manage the stressor. Threat and loss appraisals are posited to cause increased stress, as would appraisal of insufficient coping resources for the threat or loss. Zucker studied women’s experiences with reproductive loss using the stress and coping model in a longitudinal study. Results suggested that women who had experienced infertility expressed greater feelings of failure and uncertainty than those who reported abortion or miscarriage. 18 Women in medical treatment for infertility are more likely to view it as a threat than a loss, though appraisals may shift to loss over time if medical treatment is unsuccessful. 19 In a retrospective

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__________________________________________________________________ questionnaire study, van den Akker explored fertility, perceptions of artificial reproductive technology and adoption, and the importance of genetic links to children. Data indicated that individuals felt devastated by their initial diagnosis of infertility, and would pursue adoption only after extensive tests and treatment were unsuccessful. Van den Akker proposed that women may have undergone a shift in appraisal of the importance of a genetic link to children, due to cognitive dissonance when they recognised they would be unable to fulfil the goal of parenthood otherwise. 20 Though most studies examining primary appraisals have focused on threat and loss, Hansell and colleagues found that half of women in their sample reported infertility as a loss and half as a challenge. Those reporting infertility as a challenge also indicated experiencing significantly less psychological distress than women who appraised it as a loss. Hansell and colleagues provided important data indicating that differing primary appraisals of infertility are related to level of distress, as supposed in the stress and coping model. 21 Their work also suggests the potential for reappraisal or meaning-making. For women who identify motherhood as a necessary condition to attaining adult female identity, particularly in pronatalist societies, 22 infertility seems likely to be appraised as a greater threat or loss than to those who do not link motherhood and female identity. Several qualitative studies suggest that linking motherhood to womanhood brings about distress, self-blame, and questioning of deviation from expected adult development. Infertility must be understood in the social and ideological context in which it occurs. In pronatalist societies, biological parenthood and traditional conceptualisations of family are often viewed as necessary precursors to adulthood, despite that they may be defined in too idealistic a manner. The tension which may be felt by a woman with infertility is expressed in the following narrative about her support system: All the ups and downs and feeling like less of a woman…I needed them reassuring me that they love me, despite the infertility. That I’m a good person with or without kids. 23 However, the experience of ambiguity may also provide opportunities, that a border is a place to face difficult questions, be open to new possibilities, and make meaning. For example, Benasutti found that women identified ways to express creativity and generativity, regardless of eventual parenthood status, and that this allowed them to gain strength and make meaning out of their experiences. 24 Parry also noted that women’s perceptions and meanings changed over the course of infertility. 25 Initially, she found that all of the women in her study started with traditional Western conceptualisations of a nuclear family and they viewed marriage as a public signal of their readiness to pursue parenthood. Those who eventually gave birth discussed attaining parenthood as a struggle, and something

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__________________________________________________________________ to be appreciated even more than had been expected. Women who chose to end medical treatment through adoption or childfree living tended to broaden their concept of family, becoming more focused on emotional intimacy instead of genetics as a means of parenting. Though this study does not directly link to the stress and coping model, Parry does state that perceptions and appraisals change over the course of infertility treatment, which can be expressed in the narrative of a 28-year-old woman: I now know I don’t have control over my reproductive abilities and have started associating the treatment with miserable stuff…it just seems like my thoughts have shifted. It wasn’t overnight or BOOM I now want to adopt, but rather a more gradual acceptance. 26 Few quantitative studies have examined the possible link between motherhood appraisal and distress. Brothers and Maddux used a survey-design and hypothesised that linking, a process by which individuals cognitively associate certain concepts, occurs between concepts such as parenthood and happiness and that it is this process which can bring about distress. The authors assessed the role of linking in infertility-specific distress using standardised questionnaires and found that, although distress was not related to the importance people placed on parenthood, linking parenthood to positive outcomes was related to distress. For instance, those who viewed parenthood as related to marital satisfaction or femininity were more likely to report distress than those who did not. These individuals were also more likely to ruminate about infertility if parenthood was linked to marital satisfaction, femininity, social acceptance, and attainment of adult status. 27 Though the loss of an expected life goal can initially bring about significant distress and difficulty coping, it seems that one’s eventual interpretation and ability to make sense of the loss is critical to understanding its long-term impact. 4. Examination of Distress and Well-Being in Infertility In reviewing the literature on social constructions of motherhood, and distress and well-being related to infertility I decided to conduct a survey of women experiencing infertility and I hypothesised that women’s gender ideologies might impact their appraisal of infertility, and this relationship would in turn influence their experiences of infertility. Lazarus and Folkman’s model of stress and coping suggests that one’s primary appraisal of a stressor as a loss, threat, or challenge can impact distress due to that event. 28 I also questioned if women who link motherhood to femininity, adulthood, and role achievement in society, as per Russo’s motherhood mandate, would be more likely to view infertility as a threat or loss, and thereby to report more distress and less well-being. 29

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__________________________________________________________________ To examine these questions, I surveyed 239 women through the use of purposeful and snowball sampling with online measures. Participants were asked to complete a demographic and reproductive information form, the Satisfaction with Life Scale, 30 the Infertility-Specific Distress scale, 31 the Appraisal of Life Events scale, 32 and the Conformity to Feminine Norms Inventory. 33 Correlational and linear regression analyses were performed as primary data analysis and to assist in determining a potential path analytic model by which to test my hypotheses. While both the loss and threat subscales worked appropriately, the challenge items appeared to be inconsistent with the experiences of women with infertility and were removed from analysis due to poor reliability. The results provided support for the stress and coping model for the loss and threat appraisals, suggesting that women who view infertility as a threat or loss are more likely to experience distress and less likely to report subjective well-being. Others have suggested that the experience of infertility can be viewed as a struggle to be overcome, particularly through meaning-making, though the appraisal measure in my study represented ‘challenge’ in more positive terms, such as ‘exciting’ in addition to somewhat more neutral terms such as ‘informative.’ 34 The study also provided moderate support for the motherhood mandate regarding infertilityspecific distress, with the effect fully mediated through primary appraisals of loss and threat. The sample included women who desired to overcome infertility through biological parenthood, which may have limited variability in regard to social constructions of gender and motherhood. In addition, the measure assessing the motherhood mandate (Conformity to Feminine Norms Inventory) may not have been specific enough to the social constructions linking motherhood with femininity. 5. Conclusion The present data are consistent with the idea that adhering to social norms regarding gender can impact appraisal of infertility, and that the appraisal affects one’s distress regarding infertility. Numerous qualitative studies have suggested conflict related to social stigma and feminine identity, and the results of this study are consistent though indicate a need for caution regarding the magnitude of the effect. For example, women who are facing infertility may struggle to come to terms with the potential loss of a desired and expected goal, particularly with advances in medical technology that have brought about a belief that possibilities always remain on the horizon. Illustrating this conflict are Diana Parry’s narratives about infertility, such as the following: I am beginning to realise, although I thought the medical intervention would give me control over things, it really doesn’t. I realised it is not like I really want a child so bad right now. It is just that I can’t do it. What bothers me is that I’m 28 and I’m

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__________________________________________________________________ thinking I should be able to get pregnant with no problem. I can’t let go of that thought. It keeps me up at night. It’s with me all the time. 35 Continued research is needed to explore the lived experience of individuals with infertility. As with any chronic illness, women with infertility face significant distress, including grief, loss of control, powerlessness, fear, and anger. 36 Further study can help to elaborate on living with infertility, and assist women in making meaning from their experiences in order to cope with it.

Notes 1

Selcuk R. Sirin, Donald R. McCreary and James R. Mahalik, ‘Differential Reactions to Men and Women’s Gender Role Transgressions: Perceptions of Social Status, Sexual Orientation, and Value Dissimiliarity’, The Journal of Men’s Studies 12 (2004): 119-132. 2 Nancy Russo, ‘The Motherhood Mandate’, Journal of Social Issues 32 (1976): 143-153. 3 Practice Committee of the American Society for Reproductive Medicine, ‘Definitions of Infertility and Recurrent Pregnancy Loss’, Fertility and Sterility 90 (November 2008): S60. 4 Irving G. Leon, ‘Reproductive Loss: Barriers to Psychoanalytic Treatment’, The Journal of the American Academy of Psychoanalysis 24 (1996): 341-353. 5 Olga van den Akker, ‘Adoption in the Age of Reproductive Technology’, Journal of Reproductive and Infant Psychology 19 (2001): 147-159; Jacky Boivin, Laura Bunting, John A. Collins and Karl G. Nygren, ‘International Estimates of Infertility Prevalence and Treatment-Seeking: Potential Need and Demand for Infertility Medical Care’, Human Reproduction 22 (2007): 1506-1512. 6 Miriam B. Rosenthal and James Goldfarb, ‘Infertility and Assisted Reproductive Technology: An Update for Mental Health Professionals’, Harvard Review of Psychiatry 5 (1997): 169-172. 7 Alessandra Santona and Giulio Cesare Zavattini, ‘Partnering and Parenting Expectations in Adoptive Couples’, Sexual and Relationship Therapy 20 (2005): 309-322. 8 Kathleen A. Kikendall, ‘Self-Discrepancy as an Important Factor in Addressing Women’s Emotional Reactions to Infertility’, Professional Psychology: Research and Practice 25 (1994): 214-220. 9 Phillipe Morice, Patrice Josset, Charles Chapron and Jean-Bernard Dubuisson, ‘History of Infertility’, Human Reproduction Update 1 (1995): 497-504. 10 Anne Bolin and Patricia Whelehan, Perspectives on Human Sexuality (Boston, MA: McGraw Hill, 2004).

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__________________________________________________________________ 11

Leon, ‘Reproductive Loss’, 341-353. Rita Diana Benasutti, ‘Infertility: Experiences and Meanings’, Journal of Couple & Relationship Therapy 3 (2003): 51-71. 12 Elizabeth Bartholet, Family Bonds: Adoption, Infertility, and the New World of Child Production (Boston, MA: Beacon Press, 1993), 35. 13 Russo, ‘Motherhood Mandate’, 143-153. 14 Benasutti, ‘Infertility’, 64. 15 Paula Fernandes, Maria Papaikonomou and Johannes M. Niewoudt, ‘Women Suffering through Their Bodies’, South African Journal of Psychology 36 (2006): 851-879. 16 Irina L. G. Todorova and Tatyana Kotzeva, ‘Contextual Shifts in Bulgarian Women’s Identity in the Face of Infertility’, Psychology & Health 21 (2006): 123141. 17 Richard S. Lazarus and Susan Folkman, Stress, Appraisal, and Coping (New York: Spring Publishing Company, 1984), 21. 18 Alyssa N. Zucker, ‘The Psychological Impact of Reproductive Difficulties on Women’s Lives’, Sex Roles 40 (1999): 767-786. 19 Lesley A. Glover, Ashleigh McLellan and Susan M. Weaver, ‘What Does Having a Fertility Problem Mean to a Couple?’, Journal of Reproductive and Infant Psychology 27 (2009): 401-418. 20 Olga van den Akker, ‘The Acceptable Face of Parenthood: The Relative Status of Biological and Cultural Interpretations of Offspring in Infertility Treatment’, Psychology, Evolution & Gender 3 (2001): 137-153. 21 Patricia L. Hansell, Beverly E. Thorn, Steven Prentice-Dunn and Donna L. Floyd, ‘The Relationships of Primary Appraisals of Infertility and Other Gynecological Stressors to Coping’, Journal of Clinical Psychology in Medical Settings 5 (1998): 133-145. 22 Russo, ‘Motherhood Mandate’, 143-153. 23 Parry, ‘Understanding Women’s Lived Experiences’, 910. 24 Benasutti, ‘Infertility’, 51-71. 25 Diane C. Parry, ‘Women’s Experiences with Infertility: The Fluidity of Conceptualizations of “Family”’, Qualitative Inquiry 28 (2005): 275-291. 26 Parry, ‘Understanding Women’s Lived Experiences’, 919. 27 Suzanne C. Brothers and James E. Maddux, ‘The Goal of Biological Parenthood and Emotional Distress from Infertility: Linking Parenthood to Happiness’, Journal of Applied Social Psychology 33 (2003): 248-262. 28 Lazarus and Folkman, ‘Stress, Appraisal, and Coping’, 21. 29 Russo, ‘Motherhood Mandate’, 143-153. 30 Ed Diener, et al., ‘The Satisfaction with Life Scale’, Journal of Personality Assessment 49 (1985): 71-75.

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__________________________________________________________________ 31

Suzanne M. Miller, et al., ‘Intrusive and Avoidant Ideation among Females Pursuing Infertility Treatment’, Psychology and Health 13 (1998): 847-858. 32 Eamonn Ferguson, Gerald Matthews and Tom Cox, ‘The Appraisal of Life Events Scale: Reliability and Validity’, British Journal of Health Psychology 4 (1999): 97-116. 33 James R. Mahalik, et al., ‘Development of the Conformity to Feminine Norms Inventory’, Sex Roles 52 (2005): 417-435. 34 Benasutti, ‘Infertility’, 51-71. Parry, ‘Women’s Experiences’, 275-291. 35 Diane C. Parry, ‘Understanding Women’s Lived Experience with Infertility: Five Short Stories’, Qualitative Inquiry 10 (2004): 919. 36 Kim Kluger-Bell, Unspeakable Losses: Healing from Miscarriage, Abortion, and Other Pregnancy Loss (New York, NY: Quill, 2000).

Bibliography Barone-Chapman, Maryann. ‘The Hunger to Fill an Empty Space: An Investigation of Primordial Affects and Meaning-Making in the Drive to Conceive through Repeated Use of ART’. Journal of Analytic Psychology 52 (2007): 479–501. Bartholet, Elizabeth. Family Bonds: Adoption, Infertility, and the New World of Child Production. Boston, M.A.: Beacon Press, 1993. Baumann, Carol. ‘Adoptive Fathers and Birthfathers: A Study of Attitudes’. Child and Adolescent Social Work Journal 16 (1999): 373–391. Benasutti, Rita Diana. ‘Infertility: Experiences and Meanings’. Journal of Couple & Relationship Therapy 3 (2003): 51–71. Boivin, Jacky, Laura Bunting, John A. Collins, and Karl G. Nygren. ‘International Estimates of Infertility Prevalence and Treatment-Seeking: Potential Need and Demand for Infertility Medical Care’. Human Reproduction 22 (2007): 1506– 1512. Bolin, Anne, and Patricia Whelehan. Perspectives on Human Sexuality. Boston, M.A.: McGraw Hill, 2004. Brothers, Suzanne C., and James E. Maddux. ‘The Goal of Biological Parenthood and Emotional Distress from Infertility: Linking Parenthood to Happiness’. Journal of Applied Social Psychology 33 (2003): 248–262.

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__________________________________________________________________ Brown, Leah M. The History of Infertility: Frustration Survives the Centuries but Ignorance does Not. 2011. Accessed May 1, 2011. http://www.babyzone.com/preconception/infertility/article. Cudmore, Lynn. ‘Becoming Parents in the Context of Loss’. Sexual and Relationship Therapy 20 (2005): 299–308. Daniluk, Judith C., and Joss Hurtig-Mitchell. ‘Themes of Hope and Healing: Infertile Couples’ Experiences of Adoption’. Journal of Counseling & Development 81 (2003): 289–399. Deaux, Kay, Mary Kite, and Elizabeth L. Haines. ‘Gender Stereotypes’. In Psychology of Women: A Handbook of Issues and Theories, edited by F. L. Denmark, and M. A. Paludi, 205–236. Westport, CT: Greenwood Press, 1993. Diener, Ed, Robert A. Emmons, Randy J. Larsen, and Sharon Griffin. ‘The Satisfaction with Life Scale’. Journal of Personality Assessment 49 (1985): 71–75. Drewett, Robert F. ‘Uncertain Comforts: The Justification for Treating Infertility’. Journal of Reproductive and Infant Psychology 12 (1994): 173–178. Edelmann, Robert J., and Kevin J. Connolly. ‘Psychological State and Psychological Strain in Relation to Infertility’. Journal of Community & Applied Social Psychology 8 (1998): 303–311. Ferguson, Eamonn, Gerald Matthews, and Tom Cox. ‘The Appraisal of Life Events Scale: Reliability and Validity’. British Journal of Health Psychology 4 (1999): 97–116. Fernandes, Paula, Maria Papaikonomou, and Johannes M. Nieuwoudt. ‘Women Suffering through Their Bodies’. South African Journal of Psychology 36 (2006): 851–879. Fowers, Alyssa F., and Blaine J. Fowers. ‘Social Dominance and Sexual SelfSchema as Moderators of Sexist Reactions to Female Subtypes’. Sex Roles 62 (2010): 468–480. Glover, Leslie, Ashleigh McLellan, and Susan M. Weaver. ‘What Does Having a Fertility Problem Mean to a Couple?’. Journal of Reproductive and Infant Psychology 27 (2009): 401–418.

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__________________________________________________________________ Gonzalez, Lois. ‘Infertility as a Transformational Process: A Framework for Psychotherapeutic Support of Infertile Women’. Issues in Mental Health Nursing 21 (2000): 619–633. Hansell, Patricia L., Beverly E. Thorn, Steven Prentice-Dunn, and Donna L. Floyd. ‘The Relationships of Primary Appraisals of Infertility and Other Gynecological Stressors to Coping’. Journal of Clinical Psychology in Medical Settings 5 (1998): 133–145. Jordan, Caren, and Tracey A. Revenson. ‘Gender Differences in Coping with Infertility: A Meta-Analysis’. Journal of Behavioral Medicine 22 (1999): 341–358. Kikendall, Kathleen. ‘Self-Discrepancy as an Important Factor in Addressing Women’s Emotional Reactions to Infertility’. Professional Psychology: Research and Practice 25 (1994): 214–220. Kluger-Bell, Kim. Unspeakable Losses: Healing from Miscarriage, Abortion, and Other Pregnancy Loss. New York, N.Y.: Quill, 2000. Koropecky-j-Cox, Tanya, and Gretchen Pendell. ‘The Gender Gap in Attitudes about Childlessness in The United States’. Journal of Marriage and Family 69 (2007): 899–915. LaMastro, Valerie. ‘Childless By Choice? Attributions and Attitudes Concerning Family Size’. Social Behavior and Personality 29 (2001): 231–244. Lazarus, Richard S., and Susan Folkman. Stress, Appraisal, and Coping. New York: Spring Publishing Company, 1984. Leon, Irving G. ‘Reproductive Loss: Barriers to Psychoanalytic Treatment’. The Journal of the American Academy of Psychoanalysis 24 (1996): 341–353. Mahalik, James R., Elisabeth B. Morray, Aimee Coonerty-Femiano, Larry H. Ludlow, Suzanne M. Slattery, and Andrew Smiler. ‘Development of the Conformity to Feminine Norms Inventory’. Sex Roles 52 (2005): 417–435. Miller, Suzanne M., Walter Mischel, Christine M. Schroeder, Joanne S. Buzaglo, Karen Hurley, Pamela Schreiber, and Charles E. Mangan. ‘Intrusive and Avoidant Ideation among Females Pursuing Infertility Treatment’. Psychology and Health 13 (1998): 847–858.

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__________________________________________________________________ Morice, Phillipe, Patrice Josset, Charles Chapron, and Jean-Bernard Dubuisson. ‘History of Infertility’. Human Reproduction Update 1 (1995): 497–504. Parry, Diana C. ‘Understanding Women’s Lived Experience with Infertility: Five Short Stories’. Qualitative Inquiry 10 (2004): 909–922. —––. ‘Women’s Experiences with Infertility: The Fluidity of Conceptualizations of “Family”’. Qualitative Inquiry 28 (2005): 275–291. Practice Committee of the American Society for Reproductive Medicine. ‘Definitions of Infertility and Recurrent Pregnancy Loss’. Fertility and Sterility 90 (November 2008): S60. Remennick, Larissa. ‘Childless in the Land of Imperative Motherhood: Stigma and Coping among Infertile Israeli Women’. Sex Roles 43 (2000): 821–841. Roberts, Laura M., Isis H. Settles, and William A. Jellison. ‘Predicting the Strategic Identity Management of Gender and Race’. Identity: An International Journal of Theory and Research 8 (2008): 269–306. Rosenthal, Miriam B., and James Goldfarb. ‘Infertility and Assisted Reproductive Technology: An Update for Mental Health Professionals’. Harvard Review of Psychiatry 5 (1997): 169–172. Russo, Nancy. ‘The Motherhood Mandate’. Journal of Social Issues 32 (1976): 143–153. Santona, Alessandra, and Giulio Cesare Zavattini. ‘Partnering and Parenting Expectations in Adoptive Couples’. Sexual and Relationship Therapy 20 (2005): 309–322. Sirin, Selcuk R., Donald R. McCreary, and James R. Mahalik. ‘Differential Reactions to Men and Women’s Gender Role Transgressions: Perceptions of Social Status, Sexual Orientation, and Value Dissimiliarity’. The Journal of Men’s Studies 12 (2004): 119–132. Todorova, Irina L.G., and Tatyana Kotzeva. ‘Contextual Shifts in Bulgarian Women’s Identity in the Face of Infertility’. Psychology & Health 21 (2006): 123– 141.

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__________________________________________________________________ Van den Akker, Olga. ‘Adoption in the Age of Reproductive Technology’. Journal of Reproductive and Infant Psychology 19 (2001): 147–159. —––. ‘The Acceptable Face of Parenthood: The Relative Status of Biological and Cultural Interpretations of Offspring in Infertility Treatment’. Psychology, Evolution & Gender 3 (2001): 137–153. Zucker, Alyssa N. ‘The Psychological Impact of Reproductive Difficulties on Women’s Lives’. Sex Roles 40 (1999): 767–786. Sara Rieder Bennett, PhD, is a licensed psychologist and Coordinator of Research Services at Counseling and Psychological Services for Clemson University. Areas of clinical and research interest include multicultural issues, feminist psychology, reproductive health psychology, developmental and adjustment concerns, assessment, and providing training and supervision to counseling and psychology trainees.

Psychosocial Support in Multiple Sclerosis: The Confidant Relationship Explored Jane Grose, Jenny Freeman and Heather Skirton Abstract In the majority of Western societies where health and social care provision for long term conditions has been planned, the need for psychosocial support is emphasised. However, definitions are often broad and may have different meanings for health and social care workers and individuals living with long-term conditions. In this research we aimed to explore the experience of living with multiple sclerosis to enhance our understanding of the meaning of psychosocial support for people with the condition. Using a phenomenological qualitative approach, both people with multiple sclerosis and those they identified as providing psychosocial support to them (their confidants) were interviewed. Results were presented to a range of health and social care workers in focus groups to explore their responses. Three major themes emerged from the interviews: (1) people with multiple sclerosis do not want to be defined by their condition and want to live as normal a life as possible; (2) the confidant helps to maintain this sense of normality; (3) they both value the relationship and together try to manage the realities of living with the condition. Three key issues emerged from the focus groups with healthcare workers: (1) workers can use language that contradicts the rhetoric of ‘patientcentered care’; (2) some believe they can have a ‘transient confidant’ relationship with clients where emotions can be expressed; (3) some feel untrained to deal with clients emotions, especially those related to intimacy. This rejection of the biomedical model of disease in favour of value-based relationships presents challenges for health workers who are restricted, by ethical codes and reduced resources, in their management and relationships with patients. Key Words: Multiple sclerosis, qualitative research, confidant, phenomenology, psychosocial support. ***** 1. Introduction Multiple Sclerosis (MS) is a disease which can affect relatively young people in their 20’s and, although the disease progresses over time, they can live a full life span. 1 The diagnosis of a long-term condition, particularly with increasing disability, changes the narrative of an individual’s life to such a degree that expectations, hopes and plans are fundamentally disrupted, identity becomes confused 2 and the individual’s relationship with people and objects becomes increasingly challenging. 3 Inevitably the individual, to maintain quality of life, seeks help from a range of health and social care workers (H&SCW) to manage the

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__________________________________________________________________ changes, both physical and psychological. This can create a tension between living in the social world and managing the biomedical world. This tension was described by Habermas 4 in terms of ‘value rationality,’ in essence the way a person functions in the social world, based on context and the inter-relationship between friends, family, work and socioeconomic status and this he contrasted with ‘purposive rationality,’ or the biomedical model, which is described as the systems, rules and ethos of clinicians whose work focuses on the diseased body and aims to find treatments to relieve symptoms in the absence of a cure. 2. Aim of the Research The aim of the study was to explore the effects of living with multiple sclerosis on a primary relationship: the relationship between a person with MS and their closest confidant. 3. Methods In this study individual semi-structured in-depth interviews offered participants the time to describe their experience of MS, and reflect upon how, when, where, and by whom they felt emotionally supported. Of particular relevance to this research is that focus groups have been shown to be useful in understanding how people think about a particular problem and to encourage them to challenge ideas through group interaction. 5 Ethical approval was obtained from the National Health Service (NHS) Regional Research Ethics Committee. Purposive sampling was used to recruit a maximum variation sample in terms of disability level, disease duration, sex, age, and type of MS. As part of this sampling strategy, we were interested in interviewing people who had a confidant as well as those who did not. The individual in-depth interviews lasting about 45 minutes were undertaken with people with MS (13 people with a confidant and 7 people without, total n = 20). Separate individual interviews were undertaken with the confidants (n = 13). Each participant (n = 33) was interviewed in his or her own home. Data were analysed thematically using recognised methods validated by leading authors in the field. 6 4. Findings Definition of a Confidant The people with MS who were interviewed had no difficulty in describing the role their chosen confidant played in their lives. A female with MS said, ‘Sharing everything with somebody that you feel safe with, you can share with…. having somebody who understands you, and has empathy.’ Another said ‘humanity without the fuss.’

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__________________________________________________________________ It also appeared that the relationship was reciprocal with the confidant aware of how much they benefitted from the relationship, such as expressed by this male confident, ‘It’s a nice feeling, quite special, not just a normal husband or wife.’ Normality The participants described the importance of feeling normal and not being defined by the disease. This involved removing MS as the central focus of their lives: We’re not absolutely different from other people just because we have MS. We do other things just as normal... in reality we’re all human beings, we love, we hate, we argue, we have to go to work, so it’s only part of our lives (male with MS). This default position was often challenged when their own symptoms or the outside world reminded them that they had MS: You feel guilty, when you go to Sainsbury’s, for example, and you park in the designated area (disability parking bays) and people are always looking at you because if you’re not 65 and crippled….they think you don’t deserve it (female with MS) Role of the Confidant: Supportive Collusion The role of the confidant related strongly to the need to feel normal and the confidants recognised their role in helping to maintain this. They appeared to have an unspoken understanding between themselves about how to manage the symptoms of MS to enable the person with MS to live as normal a life as possible: The fact that you don’t have to think three times before saying anything…it’s the trust, it’s the understanding, the fact that I understand (confidant) and she understands the way I work… you don’t have to be careful (female with MS). The confidants described many ways that helped them to make this possible. One example was educating themselves about MS in order to be able to hold informed discussions with the person with MS should they want to. It was this preparedness that was recognised as a positive form of collusion. If a problem comes up we do discuss it obviously. If she’s feeling under the weather…but I don’t think it’s something you want to talk about all the time. You just have to get on with it and see how it goes (female confidant).

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__________________________________________________________________ The confidant would plan ahead and organise transport and rooms so they fitted the needs of the person with MS. The key to this was ensuring the person with MS was not made aware of this constant planning on their behalf, thereby enabling the person with MS to maintain a sense of control. When she comes in here I get the pillows because this (the sofa) is obviously not good when she’s having a relapse. Erm, but if she’s able to come out with a stick I just, you know, do what I can do to make her comfortable when she’s here (female confidant). The role of the confidant was therefore to be aware of the emotional and physical needs of the person with MS and to anticipate what needed to be done without the need to point out what they were doing, such as expressed by this female confident, ‘Me ignoring it helps him ignore it.’ They also protected the person with MS from others’ attempts to draw attention to the disease. This was sometimes extremely difficult and caused the confidant some anxiety: I feel like reacting quite strongly to the way people treat her. People treat the situation because she looks okay, she’d be much better if she was hobbling around with a stick... and I’m the only person who really knows about anything she feels (male confidant). In contrast to people with a confidant, the findings suggested that those who did not have a confidant appeared to have had in the past problems with relationships unrelated to MS, that had affected their willingness to trust others in an intimate way. Some had been divorced and some had a series of unsuccessful experiences. Others felt that if they had a confidant to help them with their MS then they would have to admit they had MS: But I’m still not gonna admit it to myself that I need a confidant because to me a confidant for MS means I’m worried about it, and I’m not, it’s just an illness (female with MS with no confidant). Facing Reality The person with MS and their confidant faced the reality of living with MS together. We use the example here of intimacy to describe how MS and H&SCW’s responses to it could affect sense of identity. One female interviewee explained

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__________________________________________________________________ how the physical symptoms of MS had affected her ability to enjoy an intimate relationship with her husband: it is a chastity belt I never wanted. When the participants were asked about whether they could discuss these issues with the H&SCW’s involved in their care, they explained how uncomfortable the H&SCW’s seemed to be if they brought the subject to their attention. A woman with MS said, ‘It’s a very good way of ending the conversation before it’s even got started!’ 5. Focus Groups with Health and Social Care Workers Findings The researcher then conducted two focus groups with H&SCWs. At these focus groups the themes generated from the interviews with people with MS and their confidants were presented to the groups. Toeing the Party Line? While the H&SCW’s expressed the need to respect the individual’s wishes, some of the comments suggested a different underlying attitude. The negative tone and delivery of some of the comments about people with MS was notable. For example, when discussing the theme concerning a person’s need to be and feel normal, one professional suggested: But don’t you find sometimes they are very unrealistic in what they are trying to achieve. And actually in thinking of themselves as normal they are in fact enhancing their problems (professional, focus group 1). Whilst initially there seemed to be a general agreement with this statement, later in the same focus group they seemed to change their tone. Participants began to talk about the importance of the individual, of listening to patients, and treating them as equals in care. A professional in the first focus group said, ‘It’s about treating them as individuals. That’s what you have to do all the time.’ This negative followed by a positive statement continued throughout the focus groups, hence the title of this theme, because it became difficult to distinguish between the rhetoric of ‘patient centred care’ and the reality of individual attitudes. A Fine Line When considering whether H&SCWs could take on a confidant role with their patients/clients, with all the unspoken understanding and supportive collusion that might require they described a variety of barriers that might prevent this being possible. The first was the need to set ‘boundaries’ with their patients.

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__________________________________________________________________ As professionals we constantly battle with where the boundary line is…and with some people you can get quite friendly because it doesn’t overstep the boundary. But ultimately, I don’t think you can become someone’s friend in a work setting, it would almost be considered unprofessional for a clinician to become like that (professional, focus group 1). There was also the reality of having the time to devote to individual patients. H&SCWs wanted to provide emotional support for the users of their services but sometimes felt anxious about the amount of involvement needed compared to the time they had available. A professional in the first focus group said, ‘but the broader issue of longer term emotional support, I often feel uncomfortable about getting in to that. We’ve got a lot of other things to do as well.’ They felt that they had not had enough training to deal with emotional problems such as those related to intimacy. The immediate response seemed to be to refer on to another professional qualified in this area: …the elements of someone’s personal life are probably a GP’s [general practitioner] remit really. But secondly I would always send them along to the support groups who I do actually know have leaflets on that kind of thing (professional, focus group 1). Benign Neutral - The Transient Confidant Across the two focus groups there was critical discussion about how H&SCWs could take on a confidant role. Some felt that their availability as a confidant might differ from those confidants who were family or friends by offering a briefer, but no less intense, role as a ‘transient confidant:’ It occurs to me that it might not be an absolute relationship - it might be a transient one. On this occasion, with this person, I believe I have been a confidant. But next week they might view me very differently (professional, focus group 2). In the second focus group the members discussed the idea of a ‘benign neutral,’ someone who could absorb emotion-based information that a person with MS might find difficult to share with others: One described me as a benign neutral, as someone I can talk to…from his point of view I wasn’t emotionally tied to him, I had knowledge and the understanding and rapport…I suppose he knew I wouldn’t shy away from him (professional, focus group 2).

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__________________________________________________________________ The H&SCW’s dedication was self-evident. They were enthusiastic about being involved in the focus groups and readily gave of their time and opinions. They recognised the value of providing some emotional support but they were pressured by time on the one hand and anxious about not being able to deal with emotional problems which might arise on the other. 6. Discussion This is the first time confidant relationships have been studied in relation to MS. The study demonstrated that all participants with MS, whether or not they identified themselves as having a confidant, had very clear views on the definition of this role and how it would be of benefit to them. Those without a confidant saw part of their current struggle to be finding someone who might offer them emotional comfort. For the confidants the value of having been chosen for the role and the reciprocity experienced because of it seemed to be sufficient reward for the effort involved in helping the person with MS to maintain their sense of normality. The confidant relationship offers a shield from outside pressures from the demands of clinical care and treatment to the pressures from society which does not always respond positively to people with impairment. Figure 1 provides a diagrammatic representation of the role of the confidant.

Figure 1: The role of the confidant: The confidant relationship offers protection and a supportive collusion in maintaining a sense of being and feeling normal. The majority of Western governments aim to encourage the self-efficacy of people with chronic illness. 7 This at a time when the pressure of working in a

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__________________________________________________________________ resource-restricted service may mean that, despite their determination to provide high-quality care, H&SCWs are only able to provide treatment and services that fit local objectives and targets, rather than providing care tailored to the specific needs of the individual. Shakespeare and Watson describe 8 ‘a mature society supports everyone on the basis, not of the work they have done, but of the needs they have.’ Taking this into account our study suggests that care might be re-focussed to enable people with MS to feel normal and be a valued part of society. 7. Implications for Practice Role of the confidant. Many participants felt strongly that they did not want to share treatment decisions with their spouse and yet felt their confidant had a major role to play in future care discussions. Defining people with MS by their condition. People with MS did not want to be defined by their condition. One way in which H&SCWs might address this issue is first to be aware of its importance to people with MS and then to focus on the reality of current everyday experience, not focussing on problems but enhancing the possible. Intimate relationship. Intimate relationships can be a marker for psychosocial support as they relate strongly to feeling valued and normal. There needs to be an open and non-judgmental discussion about why it is that H&SCWs avoid discussion about intimacy. 8. Conclusion The complexity of the therapeutic relationship between people with long-term conditions and their H&SCWs usually increases as their condition deteriorates. We have presented a case for adaptation of the current delivery of care to people with MS, recognising the value of confidant type relationships that remove the focus of care from problem solving to maintaining whatever an individual needs to maintain their sense of normality. We suggest that confidant relationships offer a template for appropriate and enduring psychosocial support.

Notes 1

Alan Thompson and Xavier Montalban, ‘Diagnostic Criteria for Primary Progressive Multiple Sclerosis: A Position Paper’, Annals of Neurology 47 (2000): 831-835. 2 Gerald Devins and Zachary Shnek, Multiple Sclerosis. Handbook of Rehabilitation Psychology, eds. Robert G. Frank and Timothy R Elliot (Washington, DC: American Psychological Association, 2000), 76. 3 Graham Scambler and Anthony Hopkins, ‘Being Epileptic: Coming to Terms with Stigma’, Sociology of Health and Illness 8 (1986): 26-43; David Taylor and

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__________________________________________________________________ Michael Bury, ‘Chronic Illness, Expert Patients and Care Transition’, Sociology of Health and Illness 29, No. 1 (2007): 27-45. 4 Juergen Habermas, The Theory of Communicative Action, Reasons and the Rationalisation of Society, Vol. 1 (London: Heinemann, 1984), 105. 5 Rosalind Barbour and Jenny Kitzinger, Developing Focus Group Research (London: Sage Publications, 2001), 10. 6 Immy Holloway and Stephanie Wheeler, Qualitative Research in Nursing (London: Blackwell Publishers, 2002), 20; Egon Guba, et al., Handbook of Qualitative Research (London: Sage Publications, 2000), 104; Mathew Miles and Michael Huberman, Qualitative Data Analysis (London: Sage Publications, 1994), 172. 7 Busse Reinhard, et al., ‘Tackling Chronic Disease in Europe: Strategies, Interventions and Challenge’, http://www.euro.who.int/_data/assets/pdf_file/0008/96632/E93736.pdf. 8 Tom Shakespeare and Nick Watson, ‘The Social Model of Disability: An Outdated Ideology? Exploring Theories & Expanding Methodologies: Where Are We and Where Do We Need to Go?’, in Research in Social Science & Disability, volume 2, eds. S. Barnarrt and Barbara M. Altman (Amsterdam: JAI, 2001). .

Bibliography Barbour, Rosalind, and Jenny Kitzinger. Developing Focus Group Research. London: Sage Publications 2001. Devins, Gerald, and Zachery Shnek. Multiple Sclerosis. Handbook of Rehabilitation Psychology, edited by Robert G. Frank, and Timothy R. Elliot. Washington, DC: American Psychological Association, 2000. Guba, Egon, et al. Handbook of Qualitative Research. London: Sage Publications, 2000. Habermas, Juergen. The Theory of Communicative Action, Reasons and the Rationalisation of Society. Volume 1. London: Heinemann, 1984. Holloway, Immy, and Stephanie Wheeler. Qualitative Research in Nursing. London: Blackwell Publishers, 2002. Miles, Mathew, and Michael Huberman. Qualitative Data Analysis. London: Sage Publications, 1994.

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__________________________________________________________________ Reinhard, Busse, Miriam Blumel, David Scheller-Kreinsen, and Annette Zentner. ‘Tackling Chronic Disease in Europe: Strategies, Interventions and Challenge’. http://www.euro.who.int/_data/assets/pdf_file/0008/96632/E93736.pdf. Scambler, Graham, and Anthony Hopkins. ‘Being Epileptic: Coming to Terms with Stigma’. Sociology of Health and Illness 8 (1986): 26–43. Scambler, Graham. ‘The Sociology of Chronic and Disabling Conditions: Assaults on the Life World’. New Directions in the Sociology of Chronic and Disabling Conditions, edited by Graham Scambler, and Sasha Scambler. London: Palgrave Macmillan, 2010. Shakespeare, Tom, and Nick Watson. ‘The Social Model of Disability: An Outdated Ideology? Exploring Theories & Expanding Methodologies: Where Are We and Where Do We Need to Go?’ In Research in Social Science & Disability. Volume 2, edited by Sharon Barnarrt, and Barbara M. Altman. Amsterdam: JAI, 2001. Taylor, David, and Michael Bury. ‘Chronic Illness, Expert Patients and Care Transition’. Sociology of Health and Illness 29, No. 1 (2007): 27–45. Thompson, Alan, and Xavier Montalban. ‘Diagnostic Criteria for Primary Progressive Multiple Sclerosis: A Position Paper’. Annals of Neurology 47 (2000): 831–835. Jane Grose is a Research Fellow in the Faculty of Health at the University of Plymouth with ten years experience working with people with MS. Her postdoctoral work has focussed on caring for people with cognitive impairment across neurological diseases. Jennifer Freeman is Associate Professor in Rehabilitation at the University of Plymouth. Heather Skirton is Professor of Health Genetics at the University of Plymouth.

Fear of a Living Death: A Foucauldian Discourse Analysis of Chronicity, Terminal Illness and Euthanasia Anne Ryan, Mandy Morgan and Antonia Lyons Abstract The experience of death and dying has been transformed over time by significant advances in medical care and technologies from a short-term event to one that usually involves a prolonged time of slow decline from chronic degenerative conditions. The way we make sense of this modern form of protracted dying can provide essential insights into us as human beings. This chapter utilises a Foucauldian perspective to examine the processes through which the person becomes categorised, objectified and transformed into the terminally ill subject. The classification of such subjectivities can be seen to go hand in hand with the development of modern bio-power and technologies of normalisation. Interviews were carried out amongst the general population in Aotearoa/New Zealand to explore how people made sense of terminal illness and euthanasia. The data revealed constructions of death and dying that drew on discourses of quality of life and fear of a living death. The consequences of positioning the terminally ill subject within such constructions is considered in light of the way in which that will inevitably shape their understanding and experience of themselves and the world. Furthermore, the power implications of such discursive constructions are considered in light of the current euthanasia debate. Key Words: Foucault, euthanasia, terminal illness, discourse analysis, social constructionist, chronicity. ***** 1. Introduction It has been assumed that a death-denying attitude characterises our modern society whereby death is hidden away from everyday experience and considered a socially taboo subject. 1 However, I would suggest that it is not death per se that we fear or seek to conceal but rather a protracted, agonising dying process often referred to as a living death. It is hardly surprising then that the changing face of death in our modern world has contributed to the hugely contentious nature of the debate in society today about whether individuals have the right to choose when and how to die. An insight into how we make sense of chronicity, terminal illness and euthanasia can contribute much to this discussion but far more importantly it can give us a better understanding of what it means to be human. There has been considerable research focused on identifying people’s attitude to dying and to the possible hastening of death. Public opinion surveys feature widely in such studies but have indicated varying results. 2,3 A number of studies

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__________________________________________________________________ have also found a large discrepancy between a patient’s hypothetical attitude towards considering euthanasia and a practical desire to hasten death. 4 Similarly, many studies have investigated a wide range of factors affecting the decision to hasten death. 5 However, despite this wealth of research data we are still no closer to understanding this desire for death. Much of the research surrounding death and dying has been based on mainstream methods that embrace positivism and empiricism. In contrast, this study adopts a critical research focus by engaging with a social constructionist paradigm influenced by the French theorist Michel Foucault in order to emphasise not only the importance of language but also the structures of society and social practices. The categories of constructions through which we attempt to make sense of death and dying have the effect of transforming us as human beings into subjects by what Foucault called ‘modes of objectification of the subject.’ 6 They are associated with the emergence of bio-power early in the 17th century that was focused on the regulation of all aspects of life. The process of normalisation was an essential component of bio-power as in order to standardise and control life there was a requirement for the identification of normal and abnormal. This, according to Foucault, led in the nineteenth century to the development of apparatus such as medicine and the law that could implement the necessary corrective procedures. It is important to be aware that there will be a variety of possible constructions of terminal illness and euthanasia, each of which will seek to represent them in a certain way. It is of particular interest to identify those prevailing discourses that are widely accepted as common sense as these will be linked to Foucault’s twin concepts of knowledge and power. They give certain acts and practices society’s stamp of approval by virtue of their apparent reasonableness and acceptability while marginalising possible alternative pathways. 7 The purpose of this study was to illuminate the ways in which people make sense of illness, dying, and euthanasia in these contemporary times. Furthermore, the possible consequences of this talk were examined in order to highlight the intrinsic connection between discourses of death, knowledge, and power relationships. 2. Method Participants were drawn from a convenience sample of the general population and consisted of twenty-eight people, nineteen women and nine men. They identified ethnically as Mãori (12), Pãkehã (15) and Indian New Zealander (1). The age range was from twenty-four to eighty-four years old and a wide array of socioeconomic groups was represented. Informal, semi-structured interviews took place either individually, in pairs, or small groups and these were audio-taped and transcribed.

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__________________________________________________________________ 3. Analysis The underlying research question of how people make sense of death and dying and in particular end-of-life decisions such as euthanasia provided a focus in undertaking coding of the interview transcripts. The analysis discussed in this chapter is arranged around two internally consistent constructions of the chronically or terminally ill person as a separate other and as a burden that were evident in the data. These constructions were linked to the participants’ use of discourses such as quality of life and fear of a living death to build or construct their version of chronicity, terminal illness, and euthanasia. Other Participants used a construction that has been termed other to characterise the dying person in such a way that it seemed to bear little resemblance to the person they knew. A new identity is forged by practices that focus on the body as an object and in doing so classify and isolate the terminally ill in much the same way as Foucault has described the dividing practices in his first mode of objectification that led to the creation of distinct groups and the corresponding objectification of the subject. Thus, the terminally ill subject is categorised and divided off into a new, shocking, unidentifiable entity. Jimmy: Sometimes it’s not even drugs, it’s just the mental processes aren’t working as they should and they don’t, you know, they, they’re almost, they’re not themselves anymore, they’re someone else. In this extract Jimmy links this idea of self to the working of mental processes. The apparent malfunction of this cognitive machinery has the effect of robbing the self of its very identity so that they become ‘someone else.’ In a similar fashion this construction of other is further developed in the following extract in which Mia describes events around the death of her step-children’s mother. However, in this instance the concept of physical appearance is used to explain how in terminal illness she somehow ceases to be their mother: Mia: He hated taking the kids up there every day and she was still alive and she wasn’t like their mother any more. She got all blown up with the...what do you...some harmony stuff that they get, I don’t know like, what do you call those steroids and stuff? And, and all bloated and big, fat and she would have hated it. She was so particular about how she looked and stuff and she looked awful, you know, and even Kristen who was only, I don’t know how old she would have been, twenty, not quite twenty,

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__________________________________________________________________ eighteen, you know and they said, “Doesn’t your mother look peaceful?” And she said, “No, no she doesn’t, it’s not her”. These constructions draw very much on a normative conceptualisation of life that privileges effective mental capacity and a consistent physical exterior. In this way the terminally ill subject who has been assessed and classified as diverging too far from the norm of human life needs to somehow be managed. According to Foucault the technologies of normalisation that are essential elements of bio-power have effectively identified and isolated this other and now require associated disciplinary techniques to deal with this social anomaly: Jill: And it’s like they wheel them in, these old darlings on stretchers, you know, and they’ve pushed food in one end and clean up the mess at the other and they have, Larry would say they’re past their use by date, you know, it’s so sad. Marian: We don’t treat our animals like that, we // do not treat our animals like that. Jill: // 8 We would get rid of our animals. Marian: We do not treat my cows like that. Jill: Yeah, I don’t think, I think a majority of people if they saw a picture of themselves like that and that was to be the way that they //ended their life they wouldn’t want that. Marian: Oh, put a bullet in them. No, put a bullet in them thankyou, // that’s what I do to my cows. Jill’s description of ‘them’ creates an undifferentiated grouping but she is able to moderate the harshness of this collective terminology by the tender use of the phrase ‘these old darlings.’ However, she continues to emphasise their lack of worthwhile functioning with the view that sustenance is somehow wasted in a one way journey of no purpose. This is further supported by her reference to Larry’s consumer claim that ‘they’re past their use by date.’ The problem then of what to do about this category of deviation from the norm of productive human life is readily characterised as analogous to our humane approach to animals: ‘We don’t treat our animals like that;’ ‘We would get rid of our animals;’ ‘Put a bullet in them.’

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__________________________________________________________________ Burden Discourses of quality of life were seen as being at the very core of participants’ constructions of dying as a burden. Not only was the quality of life of the terminally ill subject compromised but the burden that the dying placed on others was also seen as impacting on their own quality of life: Jimmy: Cause it’s not just the person who’s lying in the bed who’s got a lack of quality of life, it’s all the people caring for them. You’re at home, and you’re in a state where you can’t look after yourself, someone’s gonna commit to looking after you and it’s usually family members. Dave: Yeah, it puts a lot of stress on them ah? Jimmy: Lot of stress. Not, not just that person who’s looking after them but their family as well. You know it takes a lot of time out of your own family. The discourse of quality of life is viewed here through a lens of dependence. The inability to care for oneself with the corresponding need to have someone else ‘commit to looking after you’ is without question creating a burden. In contrast, the dichotomous position of independence is accorded a more privileged standing: Tia: And everyone else around you has to (.) 9 you know do everything for you. I’d find that probably the worst part. Pania: Same. Interviewer: Why do you find that so difficult? Tia: I don’t know, it’s just, I think being a burden on other people is my main issue. Katarina: I think cause I mean especially now days people are more independent too. I mean I’ve always been relatively independent and don’t want to be a burden on anyone else, don’t want to rely on anyone else to you know, expect them to take care of me. And also for them, if it’s a drawn out disease or illness or something the other thing is for them as well cause they, the families suffer.

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__________________________________________________________________ The construction of dying as a burden and the significance and importance that is ascribed to this concept of independence can be seen as a reflection of 21st century neo-liberalism that values personal autonomy and responsibility or in terms of Foucault’s bio-power, the need for self regulation and self care. Katarina’s desire to care for one’s self, not to rely on anyone else and above all not to burden others is very much part of this paradigm. Furthermore, the highlighting of the burden on the family was particularly salient in interviews with Mãori 10 participants. The family or whãnau is at the very heart of Mãori society with each member intrinsically linked in such a way that the sickness or dying of one individual will invariably affect the whãnau group as a whole. As Ngata comments, ‘The family is considered only as strong as it’s weakest member or link.’ 11 This traditional assumption of care in Mãori families is very evident in the following extract: Mikare: See and I think even further back, pre-European, cause they were whãnau orientated, so therefore they carried you, if you were mãuiui 12 they carried you, you were sick they looked after you cause it was a whãnau unit //... Ani: // It was whãnau time. Mikare: It wasn’t just a family it was a whãnau unit and so therefore the old people they weren’t a burden, they were our old people [laugh] And you looked after them totally. Mikare is at pains here to explain the depth of these whãnau ties and the interdependence of each family member. In fact he struggles to find an equivalent English word to convey the true sense of whãnau, ‘It wasn’t just a family it was a whãnau unit.’ However, it becomes apparent that a real dilemma is posed for Mãori participants as they are situated with one foot in Te Ao Mãori and the other in Te 13 Ao 14 Hurihuri, 15 the changing world of the Pãkehã: 16 Pari: And I think the whãnau was a lot tighter //as well... Mikere:// Tighter yeah. Pari: ...back in the day where they, they had no problem with taking on someone’s mãuiuitanga 17 , but these days you know because we’re all sort of living our own lives we are sort of looking at our own individual families now and saying for you we don’t want you to carry us anymore and you know that should be our choice not the iwi 18 choice but our choice not to

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__________________________________________________________________ burden you even though that we know that the whãnau whãnui 19 would take on the responsibility of us that’s //not what we want any more. Ani: //It’s the burden. There is a fundamental shift of emphasis here from the previous extract where there is an all encompassing duty of care by the whãnau that is in no way considered a burden, to a new dawn of individual responsibility, ‘We’re all sort of living our own lives;’ ‘We don’t want you to carry us anymore.’ Mãori have been dispersed from their traditional collective whãnau base through the mechanisms of colonisation and urbanisation but despite these profound changes to family structure and economic imperatives they have in many cases continued to identify with and respect these customary practices. However, the huge impact of this responsibility in our contemporary capitalist world is recognised by the participants as they become entangled in a catch-22 situation. 4. Summary and Implications This analysis has identified firstly a construction of death and dying that clearly separates the person into a category of other whereby they are objectified and take on the identity of a terminally ill subject. This construction draws on a discourse of fear surrounding an extended period of suffering where the very essence of what we take to be human is somehow lost. The second construction of burden works in close co-articulation with that of other so that accounts of death and dying are framed in such a way that burden is the inevitable consequence of being transformed into a terminally ill subject. This construction of burden draws on discourses of quality of life that are intrinsically linked to neo-liberal notions of independence and personal autonomy. Talk around burden focuses not only on the terminally ill subject but also on the wider connotations that the dying presents for the family care-giving role. The problem that this poses for Mãori participants is of particular concern. The implications of the terminally ill subject being positioned in these constructions of other and burden can be related to Foucault’s most important mode of objectification, the way in which humans actively turn themselves into subjects. 20 These constructions form the backdrop for the self-formation of a subject who can choose to die. 21 Thus, a socially constructed category of body creates a particular sort of subject who can freely accept the need for euthanasia as a therapeutic solution to this problematic anomaly. In Foucauldian terms bio-power ensures that not only will the expert gaze of medical technologies seek normalisation but the individuals who have become constituted by that essence of bodily construction will willingly subject themselves to euthanasia as a disciplinary technique. In doing so they are able to construct a version of self that fulfils

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__________________________________________________________________ societal ideals of a good death. This will undoubtedly function to normalise euthanasia and it will become a reasonable expectation of those who as Larry puts it are ‘past their use by date.’

Notes 1

Phillippe Aries, The Hour of Our Death (London: Allen Lane, 1981). Ezekiel J. Emanuel, ‘Euthanasia and Physician-Assisted Suicide. A Review of the Empirical Data from the United States’, Archives of Internal Medicine 162 (2002): 142-152. 3 Joanna Sikora and Frank Lewins, ‘Attitudes Concerning Euthanasia: Australia at the turn of the 21st Century’, Health Sociology Review 16, No. 1 (2007): 68-78. 4 Ezekiel J. Emanuel, Diane L. Fairclough and Linda L. Emanuel, ‘Attitudes and Desires Related to Euthanasia and Physician-Assisted Suicide among Terminally Ill Patients and Their Caregivers’, The Journal of the American Medical Association 284, No. 19 (2000): 2460-2468. 5 Barry Rosenfeld, et al., ‘Desire for Hastened Death Among Patients with Advanced AIDS’, Psychosomatics 47, No. 6 (2006): 504-512; Tracy A. Schroepfer, ‘Social Relationships and Their Role in the Consideration to Hasten Death’, The Gerontologist 48, No. 5 (2008): 612-621. 6 Michel Foucault, ‘The Subject and Power’, in Michel Foucault: Beyond Structuralism and Hermeneutics, eds. H. L. Dreyfus and Paul Rabinow (Chicago: University of Chicago Press, 1982), 208. 7 Vivien Burr, Social Constructionism (London: Routledge, 2003). 8 Transcription symbol, // refers to accented nucleus. 9 Transcription symbol, () refers to micro pause. 10 Indigenous New Zealander. 11 Paratene Ngata, ‘Death, Dying, and Grief: A Maori Perspective’, in Death and Bereavement around the World, eds. J. D. Morgan and P. Laungani (New York: Baywood, 2005), 30. 12 It means ‘sick.’ 13 It means ‘the.’ 14 It means ‘world.’ 15 It means ‘changing.’ 16 It means ‘European.’ 17 It means ‘sickness.’ 18 It means ‘tribe.’ 19 It means ‘wider family.’ 20 Paul Rabinow, Introduction to The Foucault Reader, ed. Paul Rabinow (London: Penguin, 1984), 3-29; Arthur W. Frank and Therese Jones, ‘Bioethics and the Later Foucault’, Journal of Medical Humanities 24, No. 3/4 (2003): 179-186. 2

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__________________________________________________________________ 21

C. G. Prado, ‘Foucauldian Ethics and Elective Death’, Journal of Medical Humanities 24, No. 3/4 (2003): 203-211.

Bibliography Aries, Phillippe. The Hour of Our Death. London: Allen Lane, 1981. Burr, Vivien. Social Constructionism. London: Routledge, 2003. Emanuel, Ezekiel J. ‘Euthanasia and Physician-Assisted Suicide. A Review of the Empirical Data from the United States’. Archives of Internal Medicine 162 (2002): 142–152. Emanuel, Ezekiel J., Diane L. Fairclough, and Linda L. Emanuel. ‘Attitudes and Desires Related to Euthanasia and Physician-Assisted Suicide among Terminally Ill Patients and Their Caregivers’. The Journal of the American Medical Association 284, No. 19 (2000): 2460–2468. Foucault, Michel. ‘The Subject and Power’. In Michel Foucault: Beyond Structuralism and Hermeneutics, edited by H. L. Dreyfus, and Paul Rabinow, 208. Chicago: University of Chicago Press, 1982. Frank, Arthur W., and Therese Jones. ‘Bioethics and the Later Foucault’. Journal of Medical Humanities 24, No. 3/4 (2003): 179–186. Ngata, Paratene. ‘Death, Dying, and Grief: A Maori Perspective’. In Death and Bereavement around the World, edited by J. D. Morgan, and P. Laungani, 30. New York: Baywood, 2005. Prado, C. G. ‘Foucauldian Ethics and Elective Death’. Journal of Medical Humanities 24, No. 3/4 (2003): 203–211. Rabinow, Paul. Introduction to The Foucault Reader, edited by Paul Rabinow, 3– 29. London: Penguin, 1984. Rosenfeld, Barry, William Breitbart, Christopher Gibson, Michael Kramer, Alexis Tomarken, Christian Nelson, Hayley Pessin, Julie Esch, Michele Galietta, Nerina Garcia, John Brechtl, and Michael Schuster. ‘Desire for Hastened Death among Patients with Advanced AIDS’. Psychosomatics 47, No. 6 (2006): 504–512.

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__________________________________________________________________ Schroepfer, Tracy A. ‘Social Relationships and Their Role in the Consideration to Hasten Death’. The Gerontologist 48, No. 5 (2008): 612–621. Sikora Joanna, and Frank Lewins. ‘Attitudes Concerning Euthanasia: Australia at the Turn of the 21st Century’. Health Sociology Review 16, No. 1 (2007): 68–78. Anne Ryan is from the School of Psychology, Massey University, Aotearoa/New Zealand. Mandy Morgan is from the School of Psychology, Massey University, Aotearoa/New Zealand. Antonia Lyons is from the School of Psychology, Massey University, Aotearoa/New Zealand.

Health and Illness Representations in Patients with Rheumatic Disease Céu Sá and Abílio Oliveira Abstract This study is part of a larger research project and aims to understand how health and illness are represented among male and female adults with rheumatic disease. The data was collected by free word association and processed through factorial correspondence analysis. Participants were questioned on several topics, such as what they think and feel about their health and illness. Their perceptions were analysed according to the age, sex and degree (or years) of illness. All participants describe the illness as chronic, and as the main source of suffering and sadness affecting their lives. The findings also indicated they are worried about their weakness, vulnerability, and dependency from the others. We found out that women were more likely than men to express negative emotions and emphasise their limitations and disabilities. They also were more accurate in describing the severe physical and functional problems of living with rheumatoid disease, emphasising the difficulties in maintaining health and an independent lifestyle. Women also consider that the pain and functional limitations seriously affect their daily activities, like work, mobility and housekeeping. As part of the psychological impact of a chronic illness, these patients feel frequently sad or discouraged, as if they were different from other people. So, individual’s knowledge about the representations of health and illness is always influenced by personal attributes like age, sex, or personal experiences and is very important. The results of the patients’ thoughts and feelings about their health and illness (given their physical, functional and emotional limitations) transmit important information for health professionals working with patients with rheumatoid disease. This information can help them to improve strategies to deal with this population, and provide more adequate care to assist them facing everyday life with greater well-being. Key Words: Health, illness, rheumatic disease, representations, perceptions, adults. ***** 1. Introduction The rheumatic diseases include over one hundred and twenty different diseases, affecting especially the muscular skeletal structures. The most common are osteoarthritis (OA) and rheumatoid arthritis (RA). 1 Their causes are frequently unknown. They are progressive and incurable, with an uncertain prognosis. Almost all rheumatic disorders are chronic and are a major cause of disability, 2 and OA 3 has a prevalence that increases steeply with age. 4

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__________________________________________________________________ Rheumatic disease restricts people’s ability to perform social and occupational roles. It is the single greatest cause of disability in the elderly, with more than 53% of adults over the age of 65 years complaining because of this significant health problem. 5 Nowadays, about 38% of the Portuguese population (circa 2.7 millions) suffer from some form of rheumatic disease (about 1.7 million men, and 0.97 million women). 6 People with rheumatic disease may experience unpredictable symptoms of severe pain, fatigue, stiffness, immobility, disability and disfigurement. This illness frequently leads to major consequences for the person’s life, affecting their social relationships, work and leisure. Moreover, the aging of the Portuguese population associated to the increase of rheumatic diseases triggers profound implications, especially in plans for caring for older people with rheumatic problems. 7 Chronic diseases are defined as those that do not have a known cure, cause general malaise, and affect the patient’s everyday life. It is urgent to understand the perceptions of health and illness in patients with chronic or disabling conditions, such as people suffering with rheumatic disease. 8 There are also expectations and beliefs about health, and the effects of health care, in peoples’ responses to illness and to the treatments that they subsequently receive. Inevitably, these expectations and beliefs are linked to health and illness conceptualisations. In this chapter we approached the representations of health and illness in patients with chronic disease, focusing on those with rheumatic disease. We considered some of peoples’ beliefs, images, and memories about health and illness, and the way these are associated to emotions. 9 2. Main Objectives We aimed to understand how health and illness are represented among adult patients; examine how these representations may differ according to the age, sex and degree of illness (time in years) of the participants; and, to verify how illness can interfere in daily life and individual’s emotions. 3. Method The present study was developed with a population of 129 participants with rheumatic disease, 64% women and 36% men. The age range of the sample is 20 to 72 years old (21% between 20 to 39 years old, 53% between 40-64 years old, and 26% more than 65 years old). About 24% of the participants reported being ill for less than five years, 38% were diagnosed between five and ten years ago, and 38% have been ill for more than ten years. Independent variables considered are sex (male or female), age, and number of years of illness. The dimensions of health and illness, how illness could limit daily activities, and participants’ emotions are the dependent variables. Based on a short focus-group, where we listened to what participants generally think and feel about pain, health, and illness, we developed a questionnaire

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__________________________________________________________________ including several open-ended questions, such as: what do you think about your health?; how do you feel in face of your health?; what do you think about your illness?; how do you feel in face of your illness?; what changes did the disease force in your daily life? The participants responded individually and anonymously to each one of the questions with simple words or phrases associated to those stimuli. The data were collected by free word association in a hospital and processed through factorial correspondence analysis. 4. Results When we asked the participants ‘What do you think about your health?,’ the most frequent answers were ‘poor health’ (26%), ‘threatened,’ ‘fragile,’ ‘malaise’ and ‘affected’ or ‘impaired.’ Health is perceived as something that compromises the participants’ life. Health is affected by the disease, which is a real threat, making them feel weakness, unease or harmed. The conceptions of women and men have some similarities; however, women tend to state they are affected by the illness, and they are delicate and fragile, while men reported they think their health is reasonable, committed, and precarious. Women expressed a more negative view about their health, while men almost seem to accept their health condition, as if they still feel strong enough to face it. Regardless of age group, the rheumatic diseases imply changes in health and life, bringing malaise for all. In fact, the experience of living with rheumatic disease can change one’s representations of health. The most common answers to ‘What do you think about your illness?’ point to a personal situation that became chronic, or permanent. Illness is complicated and causes pain, disability, limitations, discomfort, and important changes in daily life, which are neither simple nor easy to adapt to or accept for many participants. Women emphasise that the disease is a very painful process at all levels, leading to disability or dependency of others; men give more relevance to the consequences of the disease at a physical level, leading to body deformation or incapacity, particularly with work. The older a patient is, the greater the tendency to represent the illness negatively. Patients suffering from the illness for a longer time complain more about dependence and making required changes in their life. To the question ‘How do you feel in face of your health?,’ we found more negative emotions (e.g. sadness, adapted, dependent, despondent/hopeless, limited, inability, fear) than positive ones (e.g. well, tranquil). The participants were not able to represent health without thinking of illness, and to what it emotionally implies. Health and illness seem to be mixed, once the concept of health is affected by pain or suffering. It is perceived as unbearable, uncomfortable, and embarrassing, causing dependence, potential misunderstanding by others, and fear of the future. However, some patients reveal a feeling of adaptation, with wellbeing and tranquillity. Men have a more positive representation of health than

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__________________________________________________________________ women, showing greater well-being and tranquillity, accepting their state and the need for adaptation, despite their fear of what can happen to them. Women tend to feel more dependent for their care and needs, sad, and unmotivated. The younger participants seem to be more adapted and optimistic, in contrast with others complaining about their dependency and uncertainty of their possible future. The most frequent sentiment derived from ‘How do you feel in face of your illness?,’ was dependent followed by adapted, despondent/hopeless, sadness, inability, fear, revolted, acceptance, and malaise/worry. The participants feel malaise with their illness and the suffering and disability it implies. The more positive responses are mainly because men reported a more positive perception of health than women, showing a need for adaptation and some hope for the future. Women report feeling more ill, apprehensive, misunderstood, discouraged and alone. Younger people are more optimistic, showing feelings of hope and acceptance, while the older people discussed their dependency, sadness and feeling miscomprehended by family and friends. Faced with the question ‘What changes did the disease force in your daily life?,’ the participants reported limited or affected by the rheumatic disease in even the most common daily needs, such as walking, personal hygiene, dressing, getting up, or combing their hair. All of them told us that the disease interfered with their routines, especially in their work, and they underlined that they now are slower or limited when performing many tasks. Consequently, they stopped doing or became inefficient in performing some tasks and activities due to the pain they constantly or frequently feel. Most of them revealed sad feelings, discouragement and some depression symptoms. However, there are still some patients that stated they try to maintain optimism and hope about their situation. The women, more than men, indicated feeling misunderstood and alone, most often discussing the difficulty in completing household tasks. Men reported more confidence in the efficacy of treatments and medications, and in healthcare professionals’ capacity to help them when they need more. 5. Conclusions Rheumatic disease, and particularly the pain associated with it, is accompanied by great personal suffering, with significant repercussions on individual, family, social, and professional levels. Being a multidimensional phenomenon, this illness affects people in cognitive, emotional, behavioural and physical areas. Living with pain implies changes in the way a person represents the body and self. Regardless of their age and the moment when the disease was diagnosed, most participants showed difficulty living with this disease, which made them feel sad, disillusioned and discouraged. The limitations or disabilities to some tasks may also imply a strong psychological impact associated to feelings of failure, frustration and depression. 10

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__________________________________________________________________ With no cure for chronic conditions, especially in the case of OA and RA, health care professionals are urged to explore the process that mediates health and disease perceptions among these patients. Some patients know how to manage their rheumatic disease very successfully. Our understanding of how they manage will help us to develop interventions to assist people who show more difficulties. It is also important to understand some shared beliefs among patients, as these have implications on the interactions between health professionals and patients. The person with rheumatic disease may regard pain as the most important indication of the seriousness of her health or illness state, while health professionals may view symptoms such as inflammation and joint damage as more important indicators of disease severity. Such differences between these two perceptions may produce some misunderstanding or disrupt communication. Pain makes us question hope and all that we are. Facing it, we can react with courage, adaptation, fear, or uncertainty. Pain cannot be resolved only at a physical level, or by a magical cure, but rather with the knowledge that healthcare professionals have about each individual and how they are affected. Knowing the physical, functional, and emotional limitations of patients, health professionals may improve their strategies to treat them, and provide adequate care to help them to face everyday life and contribute to their well-being. This study is a step toward helping health care professionals to better understand patients’ priorities.

Notes 1

Approximately 1% of the Portuguese population suffers from RA. Mário Viana de Queirós, Reumatologia: Clínica e Terapêutica das Doenças Reumáticas Vol. 2 (Lisboa: Lidel, 2002). 3 12% of people over the age of twenty five years old are affected; and 60% of people over the age of sixty five years old have at least one joint with moderate to severe deformations. 4 Augusto Faustino, ‘Aspectos da Reumatologia em Portugal - Relevância Epidemiológica das Doenças Reumáticas em Portugal’, Revista Portuguesa de Reumatologia e Patologia Osteoarticular 13 (2003): 4-6. 5 John Pimm and John Weinman, ‘Applying Leventhal’s Self-Regulation Model to Adaptation and Intervention in Rheumatic Disease’, Clinical Psychology and Psychotherapy 5 (1998): 62-74. 6 Boletim Informativo da Liga Portuguesa Contra as Doenças Reumáticas, Liga Portuguesa contra as Doenças Reumáticas 13 (Lisboa: LPCDR, 2004). 7 Raquel Lucas and Maria Teresa Monjardino, ‘O Estado da Reumatologia em Portugal’, Observatório Nacional das Doenças Reumáticas (Porto: Programa Nacional contra as Doenças Reumáticas, 2010). 2

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__________________________________________________________________ 8

Juliet Corbin and Anselm Strauss, Unending Work and Care Managing Chronic Illness at Home (San Francisco: Jossey-Bass, 1988). 9 Sally Thorne, Negotiating Health Care. The Social Context of Chronic Illness (California: Sage, Newbury Park California, 1993). 10 Luis Gaião, ‘Impacto Médico, Económico e Social dos Reumatismos na 3ª Idade’, Acta Reumatológica Portuguesa 54, No. 1 (1990): 3-9.

Bibliography Boletim Informativo da Liga Portuguesa Contra as Doenças Reumáticas. Liga Portuguesa contra as Doenças Reumáticas nº 13. Lisboa: LPCDR, 2004. Corbin, Juliet, and Strauss, Anselm. Unending Work and Care Managing Chronic Illness at Home. San Francisco: Jossey-Bass, 1988. Faustino, Augusto. ‘Aspectos da Reumatologia em Portugal - Relevância Epidemiológica das Doenças Reumáticas em Portugal’. Revista Portuguesa de Reumatologia e Patologia Osteoarticular 13 (2003): 4–6. Gaião, Luis. ‘Impacto Médico, Económico e Social dos Reumatismos na 3ª Idade’. Acta Reumatológica Portuguesa 54, No. 1 (1990): 3–9. Lucas, Raquel, and Maria Monjardino. O estado da Reumatologia em Portugal. Porto: Observatório Nacional das Doenças Reumáticas, 2010. Pimm, John, and John Weinman. ‘Applying Leventhal’s Self-Regulation Model to Adaptation and Intervention in Rheumatic Disease’. Clinical Psychology and Psychotherapy 5 (1998): 62–74. Queirós, Mário. Reumatologia: Clínica e Terapêutica das Doenças Reumáticas Vol. 2. Lisboa: Lidel, 2002. Thorne, Sally. Negotiating Health Care. The Social Context of Chronic Illness. Newbury Park, CA: SAGE, 1993. Maria do Céu Sá is a Professor of Nursing at the Department of Rehabilitation Nursing, RGN in Higher Nursing School, Lisbon, Portugal. She has published several papers on rheumatic diseases including ‘Conviver com Artrite Reumatóide’ and ‘Sobre Viver com Artrite Reumatóide. O Impacto da Doença na Qualidade de Vida da Pessoa. Contributos para a Enfermagem.’

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__________________________________________________________________ Abílio Oliveira is an Assistant Professor, at Instituto Universitário de Lisboa (ISCTE-IUL), Lisboa, Portugal, and a Researcher, at Centro de Investigação em Sistemas e Tecnologias de Informação Avançados (ADETTI-IUL), Lisboa, Portugal. He is the author of several books including ‘O Desafio da Vida,’ ‘Ilusões na Idade das Emoções - Representações Sociais da Morte, do Suicídio e da Música na Adolescência’ and ‘O Desafio da Morte.’

Managing Multiple Chronic Illnesses: Narratives of Puerto Rican Latinos Living in the U.S. Louise Reagan Abstract Research with Latinos and chronic illness (CI) has typically focused on selfmanagement or personal perspective about a single CI, though Puerto Rican Latinos frequently live with multiple CIs. This qualitative pilot project aimed to gain understanding of how Puerto Ricans manage multiple CIs to provide insight for health care providers (HCP) caring for this ethnic group. Two female and one male bilingual Puerto Rican adults aged 32-59 years were recruited from an urban primary care centre in the New England region of the United States (U.S.). Participants had Type 2 diabetes mellitus (T2DM) and at least one other CI. Participants were asked about care of their diabetes and other CIs. Narratives were analysed using Riessman’s method of thematic analysis. Narrative themes and implications for practice are presented. Key Words: Chronic illness, Type 2 diabetes, Latino(s), self-management, Narrative Analysis, qualitative research, culture, ethnicity. ***** 1. Introduction Qualitative research related to CI and Latinos has focused on exploring beliefs 1 and phenomena of self-management, 2 particularly with diabetes. Historically, diabetes research has focused on all Latinos or Mexicans as a subgroup. Research across Latino subgroups disregards the diversity of U.S. Latinos. 3 The Puerto Rican Latino subgroup has been studied less than other subgroups in CI research, and most existing studies are on a single CI. Heterogeneity has been reported in the management of diabetes for diverse Latino subgroups, 4 and these differences may be applicable to the management of multiple CIs. Patient narratives are a useful tool to elicit patients’ stories, but there have been no narrative studies on CI with Latino persons. The purpose of this narrative analysis is to shed light on the personal experience of U.S. Puerto Ricans managing multiple CIs. 2. Methods One male (age 59) and two female (age 32 and 46) bilingual Puerto Ricans participated in this study. Participants had Type II diabetes plus one or two additional CIs. All were single and two completed high school education. Two had a full time job, and the third had a part time job.

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__________________________________________________________________ Riessman’s thematic analysis was used in this pilot study. 5 This method includes give levels of narrative representation. In the first, attending, participants reflect to make meaning of phenomena. The second level, telling, refers to the ‘performance of the narrative.’ 6 During semi-structured tape recorded interviews, participants were asked: ‘Please tell me your story of how you take care of or manage your diabetes and other chronic illnesses.’ Transcribing, the third level, refers to how the spoken language is converted to written text. In level four, analysing, the researcher reviews transcripts for themes, patterns, differences, and ‘metastory’ or summation. The fifth level is reading, or creating a written report for the researcher and others to read. 3. Thematic Analysis and Discussion A. Life Pre-CI All participants’ stories began with the onset of CI and they spoke of a time before they had a CI. Each had fond memories free of medications, finger sticks, and guilt or fear of certain foods. Although smiling as they reminisced, they quickly moved on from this defunct place to share their stories of living in the present. B. It’s All about the Diabetes Although participants discussed other illnesses, the T2DM and its associated complications were fundamental to all narratives. This phenomenon has been described in the literature as the theme of ‘centrality’ or the degree to which the patient’s diabetes assumes a central role in their larger life story. 7 Some researchers have stated that Hispanics ‘experience their diabetes holistically.’ 8 The following excerpt illustrates the assiduity given to diabetes over CIs such as cirrhosis, hyperlipidaemia, and hypertension: I get up. I take my pill sometimes. I eat, I take my pill then I check my blood sugar. Ah - you get used to that. The first day you feel the pinch but after that you get used to it (referring to checking finger stick glucose at home). I take like 10 pills. I am used to it (medications) already (laughs). I take it and sometimes I do not know how to say it but it is just like...routine. I take the pill and the pills do not bother me. I take care of my diabetes. I take my pills, eat healthier, do a little bit of exercise when I can. That is my diabetes. C. Impact of CI on Life CI management impacted many aspects of life, whether the diabetes-related blurred vision caused difficulty watching TV or the morbid obesity caused joint pain. One female participant described walking on a regular basis to lose weight

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__________________________________________________________________ and control her diabetes. ‘I have been trying to walk more lately; I walk six blocks up and down but by the time I am finished, I am suffocating.’ Although she enjoys walking, at three hundred pounds, walking can bother her knees and impact her breathing. Qualitative research on T2DM repeatedly reports that this CI affects daily life in multitudinous ways. 9 D. The ‘Not-So-Hum-Drum’ of Daily Medication Use All three participants viewed medication taking as a significant component of their CI management. Additionally all three indicated that sometimes they forget to take these medications. Unlike the self-reported acknowledgement of not checking the finger sticks, none of the participants communicated an intentional omission of medications. Research has found that for Hispanic men the diabetes self-care behaviour of medication taking was perceived more favourably than the undertaking of lifestyle changes. 10 The participants in the current study conveyed these same views. Although medication taking was not without challenges, all seemed to have less difficulty with medication taking than that of making lifestyle changes. Research has reported that Latinos often view medication a major form of treatment for T2DM and that medications can be the key to symptom resolution for CI. 11 Prior research further suggests that medication non-adherence may be influenced by financial barriers affecting the cost of medication, the presence of fatalistic attitudes, or the adverse effects of medications. 12 None of these attitudes or barriers were present for the older male participant in this study. He regarded medication taking as a routine uneventful task of CI management. This was not the case for the younger two female participants, both of whom had a shorter duration of illness. Both discussed difficult experiences with adverse medication effects. Nonetheless, medication taking was a central and accepted aspect of CI management. One participant stated: I take three pills a day, two for the diabetes and one for the high blood pressure. Yes, I have a hard time taking them because the pills are very big and they are very difficult to swallow. I take 1000mg of Metformin in the morning, and 1000mg at night, then I take 20mg of Lisinopril, which is controlling my blood pressure. It is a little bit difficult for me, sometimes I forget to take my pills. At the beginning I could not get used to taking them, they were making me sick; I was losing a lot of weight, a lot of diarrhoea. But my medication is adjusted now. E. Living with Uncertainty This theme incorporates the participants’ uncertainty associated with the diagnosis of diabetes, such as, ‘I feel fine, do I really have it?’ The theme also

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__________________________________________________________________ deals with the potential for complications from their CIs. Again the two younger female participants struggled with the uncertainty and chronicity of diabetes. The participants seemed to question if diabetes was truly permanent. For example, one participant reflected: I am thinking that if I do get into a diet that maybe I could get rid of the diabetes. However, I don’t think that’s so…is it? Because I lost a lot of weight since I found out I am a diabetic and I’m still diabetic. Some people manage it on their diet, why can’t I do that? It has been reported in the literature that Hispanics live in fear of developing illness complications, especially for diabetes. The older male participant communicated acceptance of the anticipated consequences of the T2DM, while both females weaved fear of complications into their: I’ve seen people with amputated legs and toes, and that’s because they don’t take care of what they need to do. Either they eat too much sugar or, I don’t know, a whole bunch of things that they are supposed to do. I don’t want that to happen to me. F. Fear of Insulin and Fingersticks This theme relates to T2DM rather than comorbid CIs. Fear of insulin and performing finger sticks were found to be common themes for the two younger participants, as in past studies. 13 Although they recognised the importance of this self-care skill, it hurt too much to adhere to this task. Two of the three participants remarked that their HCPs would be angry with them for not checking the ‘finger stick.’ Despite the consequences, insulin was viewed as a last resort for the two female participants. I feel I can’t get up from bed or my mouth is dry and I’m thirsty I know that something is wrong. My body is asking for too much water so my sugar is high. Once I notice this, there I check it. Sometimes it’s 250-400 or sometimes it’s 124. But it’s not something I check a lot - it hurts too much. As long as I do not have to stick [inject insulin], I’m good. G. Do This, and Don’t Do That or Else This pervasive theme illustrated the superficiality of the participants’ knowledge of CI and their interpretation of the education they may have received. The participants wanted longer and more frequent appointments with the HCP and indicated dissatisfaction with barriers to obtaining appointments. All participants

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__________________________________________________________________ narrated stories that indicated the need for more information and identified current education as related to consequences of behaviour, especially for T2DM. For example: The doctor is pretty informational, he asks me if there have been any changes, and makes sure that I go for my eyes once a year. The doctor explains that if I don’t do this, than this can happen. H. Treasuring Social Support Friends or significant others were important for all participants, but none indicated family as support. Whether it was reminding the participants to take their medications, providing encouragement to exercise or to attend a doctor’s visit, friends were part of the participants’ CI management. Latinos oftentimes view friends as part of an extended family, 14 so it may be important for HCPs to inquire about friends and family when working with Latino patients. One participant spoke of a co-worker’s support: My co-worker reminds me to take my pills; it shouldn’t be so because I am a grown woman…On Saturdays and Sundays it is the first thing I have to do in the morning, because I am not at work, she is not there to remind me. I.

Declarations of Strength Participants expressed strength as gained or embodied from multiple sources. from God, friends, children, or inner strength. One expressed inner strength: ‘You have to do what you have to do.’ The older male participant was the only to refer to God, when he spoke of strength through depression. ‘The only one who really knows what is next is God [he points and looks upward]. Yes - he helps me a lot’. The younger female participants expressed nonspiritual sources of strength. One indicated the strength manage her illness was driven by love for her two daughters, as well as triumph over past drug use. ‘They still need me. That keeps me going, it may seem strange, but I changed my life for them and I am going to continue to do good.’ This aligns with research by Dingley and colleagues, 15 who found prior experiences were a dimension of inner strength among older Hispanic women with CI. 4. Conclusions and Implications for Practice Storytelling through narrative analysis provides culturally relevant information not otherwise available to HCPs. For these Puerto Rican Latinos, diabetes management takes centre stage over all other CIs and managing CI becomes like a second job. Common themes are medication and preference of it over insulin in diabetes management. Participants fear complications though feel well much of the

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__________________________________________________________________ time; however, feeling well leads to ambiguity and uncertainty about the course of illness, especially T2DM. All have times of forgetting about the illness and its management, but reminders of the CI, its consequences, and sources of strength help them to remember and move forward. They remember the past fondly, and optimistically move ahead adapting to the changes CI brings. Participants desire greater education and more support from HCPs, hoping for the best and preparing for the worst outcomes in managing CI. As emphasised in the literature, education must be appropriate to the education and literacy abilities of all persons, particularly for Latino patients with lower socioeconomic status. Primary care initiatives need to increase the number of HCPs committed to working with this population. Open dialogue should be a goal for all visits in order to enhance our understanding of Latino individuals. If HCPs commit to this level of communication and education, the health of the Latino persons we serve will improve. HCPs hold an important position in the lives of Latinos with CI. However, we may not be meeting the needs for all persons with CI. Moving the dialogue beyond fear of consequences and use of insulin may help Latino patients, especially in management of T2DM.

Notes 1

Susan C. Weller, et al., ‘Latino Beliefs about Diabetes’, Diabetes Care (1999): 722-728; Linda M. Hunt, Miguel Valenzuela and Jacqueline Pugh, ‘Porque me Toco a Mi? Mexican American Diabetes Patients’ Casual Stories and Their Relationship to Treatment Behaviors’, Social Science Medicine (1998): 959-969; Elena Carbone, et al., ‘Diabetes Self-Management: Perspective of Latino Patients and Their Health Care Providers’, Patient Education and Counseling (2006): 202210; Erin Hatcher and Robin Whittemore, ‘Hispanic Adults Beliefs about Type 2 DM: Clinical Implications’, Journal of American Academy of Nurse Practitioners (2007): 536-545. 2 Carbone, et al.; Arlene Caban, et al., ‘It Feels like Home When You Eat Rice and Beans: Perspectives of Urban Latinos with Diabetes’, Diabetes Spectrum (2008): 120-127. 3 Kurt Organista, Solving Latino Psychosocial and Health Problems Theory, Practice and Populations (New Jersey: John Wiley and Sons Inc., 2007), 3-36 and 65-90. 4 Arch G. Mainous III, et al., ‘Acculturation and Diabetes among Hispanics: Evidence from the 1999-2002 National Health and Nutrition Examination Survey’, Public Health Report (2006): 60-66. 5 Catherine Koehler Riessman, Narrative Analysis (Newbury Park: Sage, 1993), 870.

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__________________________________________________________________ 6

Ibid., 9. Paul Haidet, Tony L. Kroll and Barbara F. Sharf, ‘The Complexity of Patient Participation: Lessons Learned from Patients’ Illness Narratives’, Patient Education and Counseling (2006): 323-329. 8 Loretta Heuer and Cheryl Lausch, ‘Living with Diabetes: Perceptions of Hispanic Migrant Farm Workers’, Journal of Community Health Nursing (2006): 49-64. 9 Catherine A. Chesla, et al., ‘Difference in Personal Models Among Latinos and European Americans: Implications for Clinical Care’, Diabetes Care (2000): 17801785; Haidet, et al., ‘The Complexity of Patient Participation: Lessons Learned from Patients’ Illness Narratives’; Hatcher and Whittemore, ‘Hispanic Adults Beliefs about Type 2 DM: Clinical Implications’. 10 Luis D. Rustvelt, et al., ‘Adherence to Diabetes Self-Care Behaviors in English and Spanish Speaking Hispanic Men’, Patient Preference and Adherence (2009): 123-130. 11 Gay Becker, et al., ‘Knowledge and Care of Chronic Illness in Three Ethnic Minority Groups’, Family Medicine (1998): 173-178. 12 S. Benavides-Vaello, et al., ‘Using Focus Groups to Plan and Evaluate Diabetes Self-Management Interventions for Mexican Americans’, The Diabetes Educator (2004): 238-256. 13 Hatcher and Whittemore, ‘Hispanic Adults Beliefs about Type 2 DM: Clinical Implications’. 14 Organista, Solving Latino Psychosocial and Health Problems Theory, Practice and Populations, 3-36 and 65-90. 15 Katherine Dingley and Gayle Roux, ‘Inner Strength in Older Hispanic Women with Chronic Illness’, Journal of Cultural Diversity (2003): 11-22. 7

Bibliography Becker, Gay, Yewoubdar Beyene, Edwina Newsom, and Denis V. Rogers. ‘Knowledge and Care of Chronic Illness in Three Ethnic Minority Groups’. Family Medicine (1998): 173–178. Benavides-Vaello, Sondra, Alexandra Garcia, Sharon Brown, and Maria Winchell. ‘Using Focus Groups to Plan and Evaluate Diabetes Self-Management Interventions for Mexican Americans’. The Diabetes Educator (2004): 238–256. Caban, Arlene, Elizabeth A. Walker, Severa Sanchez, and Maria Mera. ‘It Feels Like Home When You Eat Rice and Beans: Perspectives of Urban Latinos with Diabetes’. Diabetes Spectrum (2008): 120–127.

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__________________________________________________________________ Carbone, Elena, Milagros Rosal, Midali Torres, Karen V. Goines, and Odilia I. Bermudez. ‘Diabetes Self-Management: Perspective of Latino Patients and Their Health Care Providers’. Patient Education and Counseling (2006): 202–210. Chesla, Catherine A., Marilyn M. Skaff, Robert J. Bartz, Joseph T. Mullan, and Laurence Fisher. ‘Difference in Personal Models among Latinos and European Americans: Implications for Clinical Care’. Diabetes Care (2000): 1780–1785. Dingley, Catherine, and Gayle Roux. ‘Inner Strength in Older Hispanic Women with Chronic Illness’. Journal of Cultural Diversity (2003): 11–22. Haidet, Paul, Tony L. Kroll, and Barbara F. Sharf. ‘The Complexity of Patient Participation: Lesson Learned From Patients’ Illness Narratives’. Patient Education and Counseling (2006): 323–329. Hatcher, Erin, and Robin Whittemore. ‘Hispanic Adults Beliefs about Type 2 DM: Clinical Implications’. Journal of American Academy of Nurse Practitioners (2007): 536–545. Heuer, Loretta, and Cheryl Lausch. ‘Living with Diabetes: Perceptions of Hispanic Migrant Farm Workers’. Journal of Community Health Nursing (2006): 49–64. Hunt, Linda M., Miguel Valenzuela, and Jacqueline Pugh. ‘Porque me Toco a Mi? Mexican American Diabetes Patients’ Casual Stories and Their Relationship to Treatment Behaviors’. Social Science Medicine (1998): 959–969. Mainous III, Arch, Azeem Majeed, Richelle Koopman, Richard Baker, Charles Everett, Barbara Tilley, and Vanessa Diaz. ‘Acculturation and Diabetes among Hispanics: Evidence from the 1999-2002 National Health and Nutrition Examination Survey’. Public Health Report (2006): 60–66. Organista, Kurt. Solving Latino Psychosocial and Health Problems Theory, Practice and Populations. New Jersey: John Wiley and Sons Inc., 2007. Riessman, Catherine Koehler. Narrative Analysis. Newbury Park: Sage, 1993. Rustvelt, Luis D., Valory N. Pavlik, Maria L. Jibaja-Weiss, Kimberly N. Klein, Travis J. Gossey, and Robert J. Volk. ‘Adherence to Diabetes Self-Care Behaviors in English and Spanish Speaking Hispanic Men’. Patient Preference and Adherence (2009): 123–130.

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__________________________________________________________________ Weller, Susan, Roberta D. Baer, Lee M. Patcher, Robert T. Trotter, Mark Glaser, Javier E. Garcia, and Robert E. Klein. ‘Latino Beliefs About Diabetes’. Diabetes Care (1999): 722–728. Louise Reagan is an Adult Nurse Practitioner at Hartford Hospital and faculty member at the University ff Connecticut School of Nursing, Storrs, Connecticut.

Section 3 The Visual and Virtual Stories

Children’s Experience of Living with Cancer Lígia Lima and Marina Lemos Abstract Literature has been acknowledging that cancer is a life-threatening disease that causes a major impact on children’s psychological well-being. This study sought to learn more about children’s experiences of living with cancer through analysis of their drawings. In addition the study allowed the understanding of whether drawings are useful to know more fully the inner experience of children with cancer and the impact of cancer in their lives. A group of 27 children hospitalised in an Oncologic Unit and a comparison group of 29 healthy children participated in the study. In order to elicit expressions representative of their experience with cancer each child was handed a sheet of paper and asked to draw two persons, one healthy and one ill. Children could also write text on the paper. Drawings were analysed in relation to emergent themes and also using the CH:D coding manual by Clatworthy, Simon and Tiedman 1 to assess children’s level of anxiety, and the presence of indicators of emotional disturbance. Moreover through the content analysis of texts, this study identified the more salient aspects of the experience of being healthy and being ill, from the children’s perspective. The study supported drawings as an informative resource for capturing experiences and emotions of ill children. Confirming previous research, results from content analysis evidenced children’s longing for normalcy as a major theme present in children’s experience of illness. Significant differences between children’s drawings of the ill and healthy persons seem to reflect the contrasting experience of health and illness. Generally, this study emphasises the idea that living with cancer severely challenges children’s sense of well-being. Key Words: Cancer, children, drawing, emergent themes, level of anxiety, wellbeing. ***** 1. Introduction Despite the increase in survival rates, 2 children suffering from cancer and their families still face many demands that make their life quite challenging and full of experiences of suffering. 3 The exposure to many stressors such as repeated intrusive procedures, frequent hospitalisation, chemotherapy, isolation, immobility and restriction of normative life activities, their family’s apprehension and concerns, make these children particularly vulnerable to anxiety and other emotional disturbances. 4 The daily life of children with cancer is frequently altered and ‘longing for normalcy’ is a common response. 5 For these children, being normal is also

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__________________________________________________________________ associated with being healthy, with doing activities like going to school, being with friends, playing freely in the outside. 6 In a meta-synthesis by Epstein and collaborators, 7 children with cancer were found to have a special perspective in relation to the definition of health that the authors defined as being ‘on the outside looking in,’ as children could recognise in others what constituted health but were unable to recognise it in their own self. Therefore the comprehension of the subjective experience of living with cancer in childhood is a major component of the basic information needed to develop interventions aimed to improve these children’s well-being and quality of life. Drawing is one of many possible methods for assessing the emotional impact of illness and hospitalisation, and has the strength of facilitating the communication of thoughts and feelings. Many studies have shown that drawing is a projective task that promotes the expression of attitudes and emotions 8 and enhances communication about stress and coping in ill children, 9 and Human Figure Drawings (HFDs) are among the most frequent drawing assessment tools and have already been used to evaluate chronically ill children’s self-perception related to their illness, 10 their experience with pain, 11 as well as their emotional status. 12 As part of a wider research project, this study sought to learn more about children’s experiences of living with cancer and to understand whether drawings are useful to know more fully the inner experience of children with cancer. In order to elicit expressions representative of their experience with cancer each child was asked to draw two persons, one healthy and one ill, which were then analysed and compared. The specific goals of the present study were: (a) to explore and compare the themes present in the two drawings of children with cancer, specifically in the ill person drawing and in the healthy person drawing, (b) to identify anxiety and pathological indices in the drawings of children with cancer, (c) to understand whether the children’s experience of living with cancer is projected in the ill person drawing and whether this experience invades also the healthy person drawing. 2. Participants The clinical sample of the present study consisted of 27 children aged 7 to 13 (14 boys and 13 girls) and hospitalised in an Oncologic Unit. A paired sample (matched on sex and age) of 29 healthy children was used as controls. These children were recruited in kindergarten or schools in the same district of the oncologic centre. 3. Procedure In order to elicit expressions representative of their experience with cancer each child was handed in a sheet of paper and asked to draw two persons, one healthy and one ill. This study is part of a larger research project using the ‘Draw and

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__________________________________________________________________ Write’ technique, 13 so children were told that they could also write text on the paper. Drawings were analysed in relation to emergent themes and also using the CH:D coding manual 14 to assess children’s level of anxiety, and the presence of indicators of emotional disturbance. According to CH:D’s manual, the scoring of the drawing is divided in three sections: Part A contains 14 items scored on a scale of 1 to 10, with 1 indicating the lowest level of anxiety and 10 the highest (in this study we only used 13 items). Part B is scored by giving additional points for the presence of any of eight items presumed to be pathological indices. Part C is a gestalt rating on a 1 to 10 scale and 1 indicates coping or low anxiety whereas 10 indicates disturbance or high anxiety. A total score can be obtained by adding the 3 scores. The CH:D validity was already studied in Portuguese hospitalised children with an inter-rate agreement of 84.97 per cent. 15 4. Results Drawings were first analysed focusing on the identification of general themes, involving an interpretation of the atmosphere of the scene portrayed, type of emotions, appearance of human figure, and behaviours and activities demonstrated and the presence of equipment or special objects. The content categories identified were as follows: Table 1 - General content themes of the children’s ill person drawing and healthy person drawing ILL PERSON DRAWING CATEGORIES Setting

TYPICAL DESCRIPTORS Indoors; hospital, bedroom

Posture/ facial expression/ emotions Clothing

Static person; arms crossed; lying in bed; sad; frightened; crying Night gowns; slippers.

Behaviours and symptoms

Risk behaviours as smoking; coughing; hair loss and cap; broken legs and crutches; Hospital equipment; bed; mask; IVs; perfusion

Equipment

HEALTHY PERSON DRAWING TYPICAL DESCRIPTORS Open air; sun; clouds, vegetation; football field Movement; open arms; smile Outerwear; shoes; handbags, accessories Healthy behaviours as eating proper food; playing football Ball; playground, swing

The drawings of the ill person tend to focus on the negative impact of the disease, both physically and emotionally, and on the restrictions imposed by the disease, namely by the drawing of settings like hospital, lying in bed and the

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__________________________________________________________________ administration of IVs - being tied to a machine as illustrated in Table 1. By contrast the drawings of the healthy person focus on well-being as expressed in positive facial and body expressions and in the potential for pleasant activities like play and being in the outside. Children’s level of anxiety and pathological indices were assessed using CH:D coding manual. 16 Descriptive results are shown in table 2. Table 2 - Descriptive results of the CH:D scoring for the healthy and the ill person drawings CH:D items Part A Position of person Portrayal of action/life Length of person Width of person Facial expression Eyes/pupils Size person in environment Colour predominance Number of colours used Amount of paper used Placement of drawing in paper Quality of crayon strokes Hospital equipment Part B Omission of one body part Exaggeration of a body part Deemphasis of a body part Distortion of body Omission of two or more parts Transparency Mixed profile Shading Part C Gestalt Total

N

Min.

Max.

Mean

sd

27 27 27 27 27 27 27 27 27 27 27 27 27

1 3 1 1 1 1 1 3 2 1 1 1 1

8 8 8 6 9 9 8 10 10 10 8 8 10

3.52 5.63 3.41 2.26 6.19 4.56 2.81 8.78 8.07 6.85 1.93 3.78 2.56

2.486 1.548 2.135 1.023 3.235 3.355 2.370 1.928 2.674 2.670 2.037 1.368 2.259

27 27 27 27 27 27 27 27

0 0 0 0 0 0 0 0

5 5 0 10 10 10 0 10

0.37 0.19 0.00 1.48 4.44 2.22 0.00 3.33

1.334 0.962 0.000 3.620 5.064 4.237 0.000 4.804

27 27

1 52

8 114

4.74 77.11

1.852 14.677

As can be observed in Table 2, in general the scores of part A were not very high with the exception of the items related to: facial expressions, the amount of paper used, and the use of colour. All these results seemed to reflect a lack of energy or investment in the task of drawing, maybe due to the fatigue or other physical or psychological symptoms of cancer.

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__________________________________________________________________ In part B, the pathological indices more present were the omission of two or more body parts and shading. The first item indicates denial or concerns about body parts while shading usually represents anxiety related to a specific body part or, when more present in the drawing, overall anxiety. Part C, which assesses the overall impression that the drawing projects were quoted near to the mean point of the Likert scale and also indicates the presence of moderate anxiety and ineffective coping. Finally, according to the reference values provided by Clatworthy and collaborators, 17 the Total score found indicates an average level of anxiety, which would justify a regular therapeutic intervention to help the child cope with the disease. In order to understand if the child with cancer projected himself/herself in the ill person drawing, we compared the scores obtained in the ill person drawing with the scores obtained in the healthy person drawing (Table 3). Comparisons were performed using a Paired t-test (normal distribution of scores was previously tested). The results confirmed our expectation, that the ill person drawings scores were significantly higher than the healthy person drawings scores indicating higher levels of anxiety and emotional disturbance. Table 3 - Comparison of scores of healthy person drawing with the scores of ill person drawing

Part A Part B Part C Total

Healthy person drawing Mean Sd 48.67 12.37 6.66 8.99 2.70 2.38 58.04 18.63

Ill person drawing Mean sd 60.33 11.11 12.03 8.91 4.74 1.85 77.11 14.68

t 5.538 2.740 4.753 5.569

df 26 26 26 26

p 0.000 0.011 0.000 0.000

As mentioned before, another objective was to understand if children’s drawings seemed to reflect the child’s general ill-being, by having indicators of emotional disturbance present across both the healthy person drawing and the ill person drawing. To achieve this goal, we compared the healthy person drawings scores from the clinical sample with the healthy person drawings scores of a paired sample of healthy children using a t-test (Table 4). Results revealed that children with cancer (clinical sample) differed from their healthy controls in all scores with the exception of the Part B’s score, which measures the presence of pathological indices. In all other scores, children from the clinical sample obtained higher values compared to the children from the school sample, indicating the presence of higher levels of anxiety.

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__________________________________________________________________ Table 4 - Comparison between scores of clinical sample and school sample of in healthy person drawing (T test)

Part A Part B Part C Total

Clinical sample Mean sd 48.67 12.37 6.666 8.98 2.7 2.38 58.4 18.63

School sample Mean sd 39.55 11.98 5.000 6.55 1.00 0.00 45.55 12.91

t 2.801 0.797 3.583 2.932

df 54 54 54 54

p 0.007 0.429 0.000 0.005

5. Discussion Results support that drawings can serve as an informative resource for capturing experiences and emotions of children with cancer. The drawings of the ill person were quite illustrative of the children’s suffering, and tended to focus on the restrictions imposed by the disease and revealed a more frequent representation of negative feelings. The healthy person drawing was more representative of the child’s normal life activities for which children with cancer seem to long. There was a convergence between the themes found in the analysis of these drawings and the aspects identified in other studies in which children’s writings were also analysed. 18 However, drawings allowed the identification of additional aspects of the experience of being ill, not evidenced through the children’s writings. In particular, the use of CH:D procedure for the analysis of drawings allowed us to identify the presence of a low level of energy and general motivation, as well as more specific feelings, concerns, and anxiety about body image or a specific body part, as reflected in the presence of pathological indices like omissions and shading. As mentioned before, the children’s drawing of the ill person was specially marked by emotional and pathological indices suggesting the effects of selfprojection mechanisms. Moreover, this study also tested if being ill was also reflected in the drawing of the healthy person. Results in part support that the experience of having cancer was sufficiently invasive to be also reflected in the drawing of the healthy person. Nevertheless, the fact that no statistically significant difference was found in the presence of pathological indices (Part B of the CH:D scores) between the sample of children with cancer and the sample of healthy children, is not very consistent with the expectations. This intriguing result was already found in another similar study, and was interpreted as an expression of the more intense caring attitudes provided to severely ill children by family and friends, that compensates their suffering and helps them to cope emotionally with all the constraints imposed by the disease. 19 At a methodological level, this study supports the validity of the CH:D quantitative scoring of children’s drawings, as the results show statistically

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__________________________________________________________________ significantly differences between children suffering from cancer and healthy children. As a conclusion, it is possible to state that the drawings of children with cancer seem to reflect the child’s general ill-being and globally, this study emphasises the idea that living with cancer severely challenges children’s sense of well-being.

Notes 1

Stephanie Clatworthy, Kathleen Simon and Mary, Tiedman, ‘Child Drawing: Hospital - An instrument Designed to Measure the Emotional Status of Hospitalized School-Aged Children’, Journal of Pediatric Nursing 14, No. 1 (1999a): 2-9. 2 Judy Rollins, ‘Tell Me about It: Drawing as a Communication Tool for Children with Cancer’, Journal of Pediatric Oncology Nursing 22, No. 4 (2005): 203. 3 Iris Epstein, Patricia Orr and Bonnie Stevens, ‘The Experience of Suffering in Children with Cancer - A Meta-Synthesis’, The Suffering Child 5 (February 2004): 2, accessed March 15, 2011, http://staff.unak.is/andy/NursResearchMethods0607/TSC/CancerQualitativeMetaA nalysis.pdf. 4 Nadeane McCaffrey, ‘Major Stressors and Their Effects on the Well-Being of Children with Cancer’, Journal of Pediatric Nursing 21, No. 1 (2006): 59. 5 Barbara Sourkes, Armsfuls of Time - The Psychological Experience of the Child with Life-Threatening Illness (London: Routledge, 1995): 82. 6 Lígia Lima, Marina Lemos and Brígida Lema, ‘Concepções de Saúde e de Doença: Estudo Comparativo entre Crianças Saudáveis e com Doença Oncológica’, in Saúde, Sexualidade e Género, eds. Isabel Leal, José Pais Ribeiro, M. Marques and F. Pimenta (Instituto Superior de Psicologia Aplicada: Lisboa, 2010), 455-463. 7 Iris Epstein, Patricia Orr and Bonnie Stevens, ‘The Experience of Suffering in Children with Cancer - A Meta-Synthesis’, 4. 8 Theresa Skybo, Nancy Ryan-Wenger and Ying-hwa Su, ‘Human Figure Drawings as a Measure of Children’s Emotional Status: Critical Review for Practice’, Journal of Pediatric Nursing 22 (2007): 26. 9 Marina Menezes, Carmen Moré and Roberto Cruz, ‘O Desenho como Instrumento de Medida de Processos Psicológicos em Crianças Hospitalizadas’, Avaliação Psicológica 7 (2008): 194-196. Rollins, ‘Tell Me about It’, 205. 10 Skybo, ‘Human Figure Drawings’, 15. 11 Riitta-Liisa Kortesluoma, Raija-Leena Punamaki and Merja Nikkonen, ‘Hospitalized Children Drawing Their Pain: The Contents and Cognitive and

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__________________________________________________________________ Emotional Characteristics of Pain Drawings’, Journal of Child Health Care 12 (2008): 284-300. 12 Clatworthy, ‘Child Drawing’, 2. 13 Trefor Williams, Noreen Wetton and Alysoun Moon, A Way In: Five Key Areas of Health Education (London: Health Education Authority, 1989), 18-19. 14 Clatworthy, ‘Child Drawing’, 10-18. 15 Lima, ‘Concepções’. 16 Clatworthy, ‘Child Drawing’. 17 Ibid., 7. 18 Lima, ‘Concepções’. 19 Kortesluoma, ‘Hospitalized Children Drawing’, 296.

Bibliography Clatworthy, Stephanie, Kathleen Simon, and Mary Tiedman. ‘Child Drawing: Hospital - An instrument Designed to Measure the Emotional Status of Hospitalized School-Aged Children’. Journal of Pediatric Nursing 14 (1999a): 2– 9. —––. ‘Child Drawing: Hospital - An Instrument Designed to Measure the Emotional Status of Hospitalized School-Aged Children’. Journal of Pediatric Nursing 14 (1999b): 10–18. Epstein, Iris, Patricia Orr, and Bonnie Stevens. ‘The Experience of Suffering in Children with Cancer - A Meta-Synthesis’. The Suffering Child 5 (2004): 2. Kortesluoma, Riitta-Liisa, Raija-Leena Punamaki, and Merja Nikkonen. ‘Hospitalized Children Drawing Their Pain: The Contents and Cognitive and Emotional Characteristics of Pain Drawings’. Journal of Child Health Care 12 (2008): 284–300. Lima, Lígia, Marina Lemos, and Brígida Lema. ‘Concepções de Saúde e de Doença: Estudo Comparativo entre Crianças Saudáveis e com Doença Oncológica’. In Saúde, Sexualidade e Género, edited by Isabel Leal, José Pais Ribeiro, M. Marques, and F. Pimenta, 455–463. Lisboa: Instituto Superior de Psicologia Aplicada, 2010. McCaffrey, Nadeane. ‘Major Stressors and Their Effects on the Well-Being of Children with Cancer’. Journal of Pediatric Nursing 21 (2006): 59–66.

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__________________________________________________________________ Menezes, Marina, Carmen Moré, and Roberto Cruz. ‘O Desenho como Instrumento de Medida de Processos Psicológicos em Crianças Hospitalizadas’. Avaliação Psicológica 7 (2008): 189–198. Rollins, Judy. ‘Tell Me about It: Drawing as a Communication Tool for Children with Cancer’. Journal of Pediatric Oncology Nursing 22 (2005): 203–221. Skybo, Theresa, Nancy Ryan-Wenger, and Ying-hwa Su. ‘Human Figure Drawings as a Measure of Children’s Emotional Status: Critical Review for Practice’, Journal of Pediatric Nursing 22 (2007): 15–28. Sourkes, Barbara. Armsfuls of Time - The Psychological Experience of the Child with Life-Threatening Illness. London: Routledge, 1995. Williams, Trefor, Noreen Wetton, and Alysoun Moon. A Way In: Five Key Areas of Health Education. London: Health Education Authority, 1989. Lígia Lima is a Professor in the Oporto Nursing School - Portugal, teaching and researching in the fields of Health Psychology and Health Promotion. Marina S. Lemos is an Associate Professor (with Aggregation) in the Faculty of Psychology and Education of the University of Porto, Portugal, teaching and researching in the fields of Clinical and Educational Psychology.

Conquering AIDS through Narrative: LongLife Positive HIV Stories Felicity Horne Abstract This chapter considers the significance of body-mapping and illness narratives by people living with life-threatening conditions, exploring the ways that ill persons confer meaning on their disease. In particular, it analyses selected narratives and body maps created as a form of therapy by a group of Xhosa-speaking HIVpositive women in South Africa, showing how the way they visualise what is happening inside their bodies helps them to conceptualise and understand their illness in a more positive way. This, in turn, alleviates their symptoms and creates a sense of well-being, culminating in a sense of fulfilled purpose, in which they pass on to the world what they have learned from their experience. The shape of their narratives is linked to the ancient quest myth characterised by the three stages of separation or departure; the road of trials; and return and reintegration with society. Understanding their experience of illness in terms of larger, pre-existing cultural scripts is shown to have therapeutic effects, helping the women to retain their identities and regain a sense of order, control and self-esteem. Narrative therapy is shown to complement biomedical intervention in a highly effective way. Key Words: Illness narratives, body maps, quest myth, HIV/AIDS, South Africa, representation, therapy. ***** This chapter considers the therapeutic effects of graphic and verbal illness narratives in general, and in a group of poor, black, South African women living with AIDS in particular, compiled in a text entitled LongLife: Positive HIV Stories. 1 This text comprises a collage-like collection of their drawings and verbal accounts. The authors form the ‘Bambanani’ group, where the word ‘Bambanani’ means ‘to support each other, to lend hands.’ None of the women finished school, and most of them have a history of abuse by males. They are Xhosa-speaking, with English as a second or even third language. At one time, the combination of these factors would have ruled out their becoming writers of their life histories, but exceptional circumstances - they were part of a group selected by Médecins Sans Frontières (MSF) to be recipients of anti-retroviral (ARV) treatment - granted them the privilege of treatment and expression and the means of publication denied to the vast majority of South African AIDS sufferers at the time. The South African government’s provision of free treatment for approved cases of the AIDSill had not yet begun when this group was formed, and these women could not afford to pay for the treatment themselves. Unusually for people of their gender,

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__________________________________________________________________ race and educational level, they were enabled to articulate their experience of illness in spite of being infected with a stigmatised condition. Indeed, it was ironically - their HIV-positive status that brought the Bambanani women out of obscurity and gave them status of another kind. Had they not become ill, and thus eligible for this programme, their lives would have remained undocumented. The Bambanani group came together in the township of Khayelitsha, Cape Town, South Africa, over a period of some months, and over time the group became a tightly-knit, mutually supportive unit. Facilitating their treatment and activities was a small number of professional people including a psychologist, three doctors and an art teacher. Apart from meeting to receive treatment, the group engaged in shared activities such as discussion and the making of ‘Memory Boxes.’ Memory Box work, as it is understood in the context of HIV and AIDS, is about preparing for death, and about preparing legacies for children who are soon to become orphans. 2 Most importantly, they drew ‘body maps’ and narrated their life stories. The striking body maps resulted from an activity in which the women outlined their entire bodies onto large sheets of card which were then filled in and coloured according to the way each woman envisaged her body and what was going on inside it, as well as key events in her history. To illustrate distinctive discursive features I have had to be selective in my choice of specific body maps and extracts from their narratives. The author has the permission to use their pictures here. 1. Nomawethu Nomawethu draws herself with a smile on her face and explains: ‘White dots means I’m healthy and when I’m standing I look like I’m so happy with my hands up and my feet on the snake.’ She goes on: In my opinion the virus look [sic] like a snake. You can’t see it and it’s moving in the secret ways and the dark ways. I make the virus look like that because with AIDS many people are dying and you can’t point to the people who have the virus. It’s a destroyer...It destroys me but you see I am standing on the snake. This virus is a destroyer but I destroy this virus too. 3 Nomawethu’s comparison of the virus to a snake demonstrates the way she has externalised the virus, conceptualising it as outside of her body. AIDS is seen as an entity apart from herself. The overriding significance of her representation, however, is that she sees herself standing on the snake, a clear sign that she feels she is conquering it: that she feels its powerlessness in relation to herself. The snake metaphor illustrates how the notion of a physically real entity (the snake) concretises and makes visible an abstract, invisible state (the HI-virus) and the subject’s attitude towards that state (standing on, and thus controlling it).

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Figure 1: Nomawethu. The interdependence of visualisation, language, metaphor and conceptualisation is evident here. Nomawethu’s representation illustrates Kleinman’s view that ‘patients’ explanatory models of chronic illness enable sick persons to order, communicate, and thereby symbolically control symptoms. 4 2. Nondumiso In the body map of another Bambanani woman, Nondumiso, the only internal organs she shows are her lungs, 5 probably because her HIV-infection first manifested as TB. 6 The next stage of her illness was a serious skin problem: My brother told me about MSF when I got very sick, sick, sick. I had things like ringworms in my skin - it looked like a brown map. My skin was very light before but it slowly started to get a grey colour, then it went darker and darker. The doctors never told me why it happened. I thought maybe it’s the HIV, but I don’t know how it works. It’s all over my body. It started to itch when I was eating the TB tablets and I told the nurses, these tablets are making my body itch. They said it was nothing. I finished the pills and my skin started to go dry and itch; then it started to peel and peel like a snake. As I scratched, it turned dark. It was terrible and I felt like going underground. When I looked at myself in the mirror I felt it’s not me. I couldn’t go outside. People were going to ask me, “What is wrong with you? Why are you so dark?” So I just stayed inside the house. If I went

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__________________________________________________________________ to the clinic I just took an early taxi and came back again and went inside the house and stayed in bed and watched TV. I thought to myself, there’s no future, I’m going to die. I have done nothing, no children, my family is still poor. I thought like that. 7 These problems gradually improved as the medication began to work. On her body map she marks her body with large, striking, tricoloured blotches: blue dots inside, encircled by red and then white. This is how she explicates her drawing: On my picture I drew the virus - it’s the small blue dot. The white is my blood. The red circles are the ARVs eating the virus, and the virus is going down. The ARVs are strong. 8

Figure 2: Nondumiso. The significance of this visualisation is the choice of colour and relative size of the physical contenders within her body. The virus is represented as blue and small, while the surrounding ARVs are shown as large and red in colour. The more obvious choice would be red for the blood, but she chooses this strong colour for the medication. The dominance in hue, intensity and size of the ARVs reveals her sense of their efficacy and power over the physically insignificant HI-virus. Like Nomawethu’s, her drawing and narrative are an indication of her psychological confidence that AIDS is being checked and controlled within her body, although, in reality, she and others like her are in and out of remission,’ ‘occupy[ing] a liminal position between health and illness.’ 9

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__________________________________________________________________ 3. Victoria Victoria explains her picture thus: To draw the little dots outside, it’s a virus. In 1999 I found out I’m HIV positive. I went to the clinic for my baby and I was told by the counsellor I was dom. Stupid.... I put more virus around my heart. When I get sad I get sore, and I feel the pain all around my heart and it go through to my stomach. I feel it like needles going down my body especially when somebody I know dies from the virus. Notable here is the way sadness and fear manifest as pain, showing the close linkage between emotions and physical symptoms: how negative feelings are experienced as a worsening of the disease. She goes on: Now see this handprint. See the one finger on my left hand is shorter? When I was 13 in my culture, we cut the fingers, especially the ladies. The boys go to the bush. My father he want to mark his children, his ladies, so they doesn’t get lost, especially in Cape Town. If the train hits you, they must know that mark in the mortuary, when they come to find you ... When I look at this picture I can see what I am, and what I’m not, and what I believe in, and what I don’t. I can see that my finger is missing and that I have HIV, but also that I’m strong, very strong … I have power over this virus. 10 This response echoes Nomawethu’s confidence that the virus is being conquered. Additionally, the drawing and narrative have helped to create and preserve a sense of identity and have clearly facilitated the process of regaining self-acceptance.

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__________________________________________________________________

Figure 3: Victoria. 4. Bulelwa The dominant image in Bulelwa’s body map is a tree, which she shows growing up from her lower abdomen to high on her chest and over her lungs. The tree she pictures in her body is a profoundly significant symbol for her because, as she relates in her narrative, trees provide shade, beauty and fruit. The leaves are drawn as large and the growth is vigorously upward, suggesting a belief in the vitality of the life forces operating in her body. The therapeutic effect of drawing her body map can be seen in this response of hers: When I look at this picture I just love the picture. I didn’t know when I draw myself down [sic] I can be like this. I feel very better [sic] now. Before I just saw myself as I am, not like this, like a tree. 11 Bulelwa’s words show that distancing has taken place both through the transferring of her self-image to another place, a cardboard surface, and through metaphor (the tree) which represents her in another way, as a different form of life. The effect of seeing herself as a healthy, growing tree is emotionally uplifting: she feels liberated from her diseased body.

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Figure 4: Bulelwa. 5. Maria Maria also draws psychological strength from plant life: This is myself, my body with some marks. These dots it’s where the virus lives. I drew these dots on my baby too before I knew he was positive or thought he was positive. I drew him in the womb because at first he was having my antibodies. And I drew this one pineapple because I grew up in the land of pineapples. In the case of HIV, pineapple is also a cure. You must eat the hard block inside. That block is fighting with the virus inside your tummy.

Figure 5: Maria.

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__________________________________________________________________ It is significant that Maria draws the pineapple as square in shape, and uses the word ‘block’ twice. ‘Block’ suggests strength and solidity, as well as the idea of ‘blocking’ the progress of the virus. Her visualisation helps her to feel that her body is successfully resisting the virus. 6. Babalwa Babalwa uses her body map to depict not only her physical condition, but her role and emotions in relation to AIDS: When I look at my body map, it reflects the life of activism. This is why one foot is up in the painting. It shows the strength I have every day to fight for my life and those who cannot fight for themselves. At the Holiday Inn when the Minister of Health was giving a speech, as part of the Civil Disobedience Campaign we disrupted her talk and I threw my shoe at her. People in her own family died and are dying, and she still refused to say that HIV causes AIDS and says that good nutrition can be the main answer to help you if you are infected. When I look at this body map I feel like my life is not finished. I feel good, actually, explaining how I feel inside, certain feelings and memories that I don’t normally talk about.… So this body map explains the fears, sadness, happiness and troubles through a life of HIV and how this changes life. In the end you see the map lying down, you see your inside and you yourself are someone looking from outside at your inside. Your problems become something like a tale. 12 The words ‘you yourself are someone looking from outside at your inside’ illustrate how effectively body-mapping and narrative distance the self from the body, while the word ‘tale’ suggests the creation of a personal myth. Babalwa’s creative act enables her to see and understand her body and whole life with new clarity, and this in turn provides a strongly beneficial psychological effect.

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Figure 6: Babalwa. 7. Conclusion The Bambanani women’s LongLife: Positive HIV Stories show how art and narrative therapy can help ill persons to regain a sense of order, control, meaning and purpose in their lives, and preserve their sense of identity and wholeness. To narrative therapists, such accounts vindicate narrative therapy, the aim of which is to deconstruct unhelpful, problem-saturated stories, to reconstruct alternative stories and to re-author preferred identities, 13 proving that ‘changing people’s stories about their lives can help to change their actual lives.’ 14 Kleinman observes that ‘the illness narrative is a story the patient tells…to give coherence to the distinctive events and long-term course of suffering…Over the long course of chronic disorder, these model texts shape and even create experience.’ 15 Individual stories possess their own particularities, but generic, universal elements underlying the narrative structure may be traced. These universal elements may be linked to myth, where ‘myth’ may be understood as ‘an intellectual attempt to order chaos and contradiction in the perceived relation of men to nature.’ 16 This reveals, in Ruthven’s view, the human ‘yearning for order in the midst of upheavals and fragmentariness.’ 17 Narratives by the AIDS-ill can be seen as attempts to find a cause-and-effect structure or orderly design in what would otherwise be a terrifyingly random universe. The quest-myth has been identified by Northrop Frye and Joseph Campbell as the ‘central myth of literature.’ In essence, the quest-myth describes the actions of a hero who suffers, achieves self-knowledge, and then makes that knowledge known. The quest-myth involves three stages: separation or departure; the road of trials; and return and reintegration with society. 18 If we apply this model to the experience of illness, the ‘departure’ stage would be the manifestation of illness; the ‘road of trials and victories’ would correspond to the suffering of the ill patient; and the ‘return and reintegration with society’ would correlate with the survival of

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__________________________________________________________________ the hero, whose responsibility it is to witness to others what he or she has learned from the experience. ‘Quest’ narratives tell of how illness may be lived as a condition from which something positive can be learned and passed on to others. 19 This is evident in the Bambanani women’s declaration of intent which states: We Bambanani women are making this book because we want to teach people living with HIV how to live with HIV. And to also teach those who are not living with it how to survive. And to let people know that we positive people are getting a [sic] treatment to help us live longer. We want to tell the whole world that we are many and we are working. We are healthy. Also we want our stories to be published to [sic] the other countries. For those who are positive not to lose hope, maybe some day we will get a cure. We want people outside to know that it is not the end of the world. You can live as many years as you want. 20 In this statement it is apparent that the women are enjoying a profound sense of fulfilled purpose. They have reached the final stage of the quest myth, the ‘return and reintegration with society,’ involving the responsibility of witnessing and testifying to the world, of passing on to others what they have learned from their experience. Their sense of a larger purpose in the final stage resonates with Jung’s concept of the ‘collective unconscious’ whereby we move beyond the personal to the transcendental and achieve a state in which ‘the voice of all mankind resounds in us.’ 21

Notes 1

Jonathan Morgan and the Bambanani Women’s Group, LongLife: Positive HIV Stories (Cape Town: ABC Press, 2003). 2 Ibid., 9. 3 Ibid., 22-23. 4 Arthur Kleinman, The Illness Narratives: Suffering, Healing and the Human Condition (New York: Basic Books, 1988), 48-49. 5 Morgan, LongLife, 36. 6 Ibid., 38. 7 Ibid., 41. 8 Ibid. 9 Lisa Diedrich, Treatments: Language, Politics and the Culture of Illness (Minneapolis: University of Minnesota Press, 2007), 3. 10 Morgan, LongLife, 56. 11 Ibid., 86.

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Ken K. Ruthven, Myth (London: Methuen, 1976), 82. Michael White and David Epston, Narrative Means to Therapeutic Ends (New York: Norton, 1990). 14 Catrina Brown and Tod Augusta-Scott, Narrative Therapy: Making Meaning, Making Lives (Thousand Oaks, CA: Sage, 2007), xvii. 15 Kleinman, Illness Narratives, 49. 16 Jean Comaroff, ‘Medicine, Symbol and Ideology’, in The Problem of Medical Knowledge: Examining the Social Construction of Meaning, eds. Peter Wright and Andrew Treacher (Edinburgh: Edinburgh University Press, 1982), 50. 17 Ruthven, Myth, 21-22. 18 Joseph Campbell, The Hero with a Thousand Faces (Princeton: Princeton University Press, 1973 [1949]), 36. 19 Arthur W. Frank, ‘Just Listening: Narrative and Deep Illness’, Families, Systems and Health 16 (1998): 197-210. 20 Morgan, LongLife, 5. 21 Ruthven, Myth, 21-22. 13

Bibliography Berger, Peter, and Thomas Luckmann. The Social Construction of Reality: A Treatise in the Sociology of Knowledge. London: Allen Lane, 1967. Brown, Catrina. ‘Dethroning the Suppressed Voice: Unpacking Experience as Story’. In Narrative Therapy: Making Meaning, Making Lives, edited by Catrina Brown, and Tod Augusta-Scott, 177–196. Thousand Oaks, CA: Sage, 2007. Campbell, Joseph. The Hero with a Thousand Faces. Princeton: Princeton University Press, 1973 [1949]. Comaroff, Jean. ‘Medicine, Symbol and Ideology’. In The Problem of Medical Knowledge: Examining the Social Construction of Meaning, edited by Peter Wright, and Andrew Treacher, 49–68. Edinburgh: Edinburgh University Press, 1982. Couser, G. Thomas. Recovering Bodies: Illness, Disability and Life Writing. Wisconsin: Wisconsin University Press, 1997. Diedrich, Lisa. Treatments: Language, Politics and the Culture of Illness. Minneapolis: University of Minnesota Press, 2007.

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__________________________________________________________________ Epstein, Julia. Altered Conditions: Disease, Medicine, and Storytelling. New York and London: Routledge, 1995. Estroff, Sue E. ‘Identity, Disability and Schizophrenia: The Problem of Chronicity’. In Knowledge, Power and Practice: The Anthropology of Medicine and Everyday Life, edied by Shirley Lindenbaum, and Margaret Lock, 247–286. Berkeley: University of California Press, 1993. Frank, Arthur W. The Wounded Storyteller: Body, Illness, and Ethics. Chicago: University of Chicago Press, 1995. —––. ‘Just Listening: Narrative and Deep Illness’. Families, Systems and Health 16 (1998): 197–210. Frye, Northrop. Fables of Identity: Studies in Poetic Mythology. New York: Harcourt Brace Jovanovich, 1963. Garro, Linda. ‘Chronic Illness and the Construction of Narratives’. In Pain as Human Experience, edied by Mary-Jo Del Vecchio Good, Paul E. Brodwin, Byron J. Good, and Arthur Kleinman, 210–221. Berkeley: University of California Press, 1992. Hawkins, Anne H. Reconstructing Illness: Studies in Pathography. West Lafayette, Indiana: Purdue University Press, 1993. Kleinman, Arthur. The Illness Narratives: Suffering, Healing and the Human Condition. New York: Basic Books, 1988. Lakoff, George, and Mark Johnson. Metaphors We Live By. Chicago: University of Chicago Press. 1980. Morgan, Jonathan, and the Bambanani Women’s Group. LongLife: Positive HIV Stories. Cape Town: ABC Press, 2003. Morris, David B. Illness and Culture in the Postmodern Age. Berkeley: University of California Press, 1998. Ruthven, Ken K. Myth. London: Methuen, 1976.

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__________________________________________________________________ White, Michael, and David Epston. Narrative Means to Therapeutic Ends. New York: Norton, 1990. Felicity Horne, Department of English Studies, University of South Africa.

Lifting the Lid of Pandora’s Box: Alzheimer’s Disease in the Movies Amir Cohen-Shalev and Esther-Lee Marcus Abstract In the last decade, mainstream cinema, having engaged the delicate territory of chronic conditions such as mental retardation, schizophrenia, autism, and cancer, has made a significant, if slightly hesitant, foray into the territory of Alzheimer’s disease (AD). Starting with Iris, through A Song for Martin, The Notebook, Away from Her, The Savages, up to the 2011 winner of Berlin’s film festival, A Separation, AD has become a legitimate subject for cinematic representation. Yet the picture of AD that is obtained in those AD mainstream films supports an already widespread attitude marked by over-simplified, bifurcated, and overly deterministic aspects. In those films the patients are depicted as passive and helpless, while the focus shifts to the family caregivers. The contribution of two recent non-mainstream films, Cortex and Pandora’s Box to the humanisation and cognitive reappraisal of AD is considered as an alternative to mainstream AD films. These two films take a different route in keeping the centre stage for the AD patient; they present the patient as an active agent who is struggling to retain control and some sense of freedom and choice. Key Words: Aging in motion pictures, Alzheimer’s disease, caregiver, dementia, film studies. ***** 1. Introduction In the last decade, mainstream cinema, having engaged the delicate territory of chronic conditions such as mental retardation, schizophrenia, autism, and cancer, has made a significant, if slightly hesitant, foray into the territory of Alzheimer’s disease (AD). 1 Contemporary cinema seems to be increasingly more concerned with dementia of AD type. 2 AD has become a major medical, social, and psychological issue for many of us, and as such it cannot be avoided any longer. Cinema can, through fictional as well as documentary stories, depict AD to the public so that it can ‘handle the difficult subject of Alzheimer’s with grace, dignity, and realism.’ 3 In a recent survey, Segers found that 28 films dealing with the subject have been released during the first decade of the present century. 4 Several films have received considerable public attention, such as Iris (Eyre, 2001), 5 A Song for Martin (August, 2001), 6 The Notebook (Cassavetes, 2004), 7 Away from Her (Polley, 2006), 8 The Savages (Jenkins, 2007), and most recently, the 2011 winner of Berlin’s film festival, A Separation, by Iranian filmmaker Ashghar Farhadi. Yet the picture of AD that is obtained in these films supports an already

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__________________________________________________________________ widespread attitude marked by over-simplified, bifurcated, and overly deterministic aspects. Presenting the patient as completely passive and helpless reinforces the status of AD as a medical taboo 9 and perpetrates therapeutic and psychological despair. In those films family caretakers turn out to be the real protagonists, leaving the patient behind, in a marginal role. 10 The contribution of two recent non-mainstream films Cortex (Boukhrief, 2008) and Pandora’s Box (Ustaoğlu, 2008) to both a humanisation and a re-appraisal of AD will now be considered as an alternative to mainstream AD films. These two films take a more difficult and more risky route in keeping the centre stage for the AD patient. They provide a refreshing, alternative rationale to mainstream cinematic representations of AD in that they insist on getting under the symptom-ridden medical reality of AD. They present the patient as an active agent who is struggling to retain some control over the situation and some sense of inner freedom and choice. Resilience of mind, and by extrapolation, of character, is the underlying subject of those two films. The insistence on struggle, often bitter and desperate, bespeaks eloquently of the potential for dignity even in a dire condition such as AD, and of a belief in human resilience, conviction, and perseverance. 2. Not Necessarily Mind-Less: Cortex Cortex (Boukhrief, 2008) is the story of an ex-policeman who opts to protect himself from the pitfalls of dementia by moving into The Residence, a facility designed to provide for elderly patients with neurodegenerative disorders. The opening scene shows an aging, yet well preserved, man in the quiet privacy of his home, packing for some kind of trip, the nature of which remains at this point obscure. The silence in the room and the man’s concentration alert the viewers to the specific, obviously unusual objects chosen for the ride: a Rubik’s cube, a book of Sherlock Holmes adventures, and a revolver. The last object is lifted off a trash can after a brief search. The choice of objects is intriguing: the first suggests mental agility and abstract thought; the second - the joy in the mystery of problemsolving and curiosity as to human nature; and the third - the practicality of administrating justice and self-defence, as well as violence. These aspects of the human condition, as they specifically apply to AD, are cleverly and richly investigated in the film. In contrast to the mainstream AD films mentioned earlier, Cortex has an AD protagonist who is the dynamic, rather than passive, focus of both identification and dignity. Charles Boyer, the retired police detective, is not long in The Residence before ominous events begin to occur, including a high number of deaths among the patients. Eschewing the notion that this may be inevitable given the ages and illnesses of the populace, Charles begins to investigate, questions lingering about whether his suspicions are valid or merely a product of the excop’s Alzheimer-driven paranoia. The viewer realises that the protagonist’s AD identity is inseparable from his identity as a detective. In fact, the hero does not

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__________________________________________________________________ lose identity with the onset of AD; his identity becomes embedded in the new situation. He continues to live through his former identity even as AD gradually takes control over his consciousness. The ex-detective’s senility seems to be floating in and out, leaving the viewer guessing whether he is deliberately fooling the institute’s staff or simply heading swiftly toward oblivion. The institution becomes a hostile world in which the protagonist is forced to move with care, suspicion, and audacity. The authorities do not mean well, and it is not clear whether staff members are contriving against him or simply caught up in their own petty hatreds and jealousies. Fellow travellers unexpectedly cross the protagonist’s road and then mysteriously disappear. We are offered a glimpse of the world from the AD patient’s point of view: pathological paranoia and normal hostile world scenarios keep alternating, adding to an already fragile consciousness. 11 At times, despair has the upper hand, for example when Boyer becomes convinced he is haunted by his own demented ghosts. It is easier to play up to the expectations of the ‘healthy’ world outside. At the end, though, perseverance wins the day, and the AD-stricken ex-detective is rewarded with recognition of his intellectual achievement. The victory is temporary, no doubt, but a moment of satisfaction and pride makes all the difference between unconditional defeat and combative fulfilment. ‘What was my code name back in the department,’ he asks his son at the end; ‘Cortex’ comes with the answer. The seat of intelligence, identity, and creativity has won its last battle. The film’s director, Michel Boukrieff, succeeds in challenging well-entrenched stereotypes concerning the depiction of AD in film. First, this film focuses exclusively on the AD patient, rather than on his relatives or caregivers. Second, AD itself is in a sense the focus of the film. The film uses AD as a narrative device, cleverly blurring reality and imagination as the viewer is gradually led to believe that the whole thing may be taking place in the confused mind of the patient/protagonist, only to be positively disillusioned again at the very end. This double disillusionment lends a special significance to the film - not credence in the sense of medical or psychological credibility, but what we might call metaphorical credibility. The AD victim’s desperate efforts to combat his condition, to fight what seems to be a lost battle, and arrive at some success, although modest and probably short-lived, is a triumph of some consequence, and a metaphor for strength and stamina facing a sealed fate. It is a reminder of a famous line from Alain Resnais’ Providence, where the dying and ailing writer Clive Langham takes his leave from his family with the words ‘Nothing is written,’ an enigmatic phrase, possibly meaning nothing is predetermined, and there is a freedom of choice even in the most constricting of circumstances. 3. The Horizontal Turned Vertical: Pandora’s Box Family, rather than biology, is the battleground of the AD patient/protagonist in Pandora’s Box, by Turkish director Yeşim Ustaoğlu in 2008. A long, very slow

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__________________________________________________________________ pan shot of a green mountain appears on the screen, basking in bright morning light, setting a mood of pensive calm and quiet natural beauty, punctuated by unobtrusive chirping of birds. The shot continues, capturing a country house, and stopping at a second one. The camera at this point cuts to what seems to be the interior of this second house, where an old, stooped peasant woman, Nusret, is seen from behind walking slowly towards the balcony. Next, the old woman is seen standing on the balcony, holding a white bag with red acorns, spreading them on a tray. Her gaze wanders for a moment, and then, with no apparent reason or purpose, it turns into an intense stare of uncertain emotional quality, partly horror, partly determination, confused and sharp at the same time, with no apparent focus in the real world. The camera cuts from the woman’s gaze to the bag of acorns that now appears left open, catching the acorns spreading on the floor of the balcony, as the old woman seems to be turning inside. It is left for the viewers to speculate on the nature of the old woman’s behaviour and possible motive. There is no text or any other narrative clue in the scene, apart from a sense of a certain determination that accompanies her staring at the mountain. Soon the enigmatic scene will be given its due, but not before spectators will have been taken to very different territories. The following sequence is comprised of short scenes depicting a number of characters moving about in a defined environmental context, but still telling us very little about their identities. First in the sequence is a picture of a seaport at dawn, very gray, its flat horizontality standing out in strict juxtaposition to the vertical mountainous scenery of the opening scene. It takes a few seconds to spot a young man, Murat, lying on the stone deck, woken up by the sound of a cellular phone ringing. Listening for a few seconds, he does not reply and puts the mobile phone back in his coat pocket. The scene then cuts to the bedroom of an urban apartment, where a woman, sitting beside a bed where a man is sleeping, shows signs of frustration as her calls are not being returned. The way the narrative unfolds is significant, in that it renders the viewer responsible for putting together these bits and pieces, which are disconnected in terms of place and narrative logic, yet are connected by an underlying emotional logic. They belong to their environment, but at the same time they also do not. These scenes are all silent, cinematically minimal, not explicitly related narrativewise, creating an overall effect of barren distress, suggesting blocked communication and general estrangement. It is a puzzle of disconnectedness. The structure of the introductory scenes is deliberately fragmented, fallen apart as it were, the way the acorns in the old woman’s sack spread apart, the way her consciousness is breaking apart by AD. About a quarter of an hour into the film, a story seems to be forming. The old woman of the first scene had disappeared from her village somewhere in the mountains above the Black Sea in contemporary Turkey. Her three adult children drive up from the city in order to find her. There is also a grandson, Murat (the

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__________________________________________________________________ youngster from the opening harbour scene), a student whose relationships with his parents are in deep crisis. Crisis is an ongoing reality in the lives of the old woman’s children. The older daughter is unable to maintain marital relationships with a husband who loves her, the younger daughter is having a frustrating affair with a married man, the young son is leading a down-and-out life in a poor, rundown neighbourhood, and the grandson, Murat, who had never met his grandmother, is a school dropout and a drifter. Into this drab family situation enters the old, Alzheimer’s-stricken woman. To her family she is ‘acting strange.’ At first they do not make the medical connection, probably because she had been a stranger for them for many years, and vice versa. Bits of information scattered throughout the film depict a grim picture of desertion and even hatred. The father had apparently left the household for a younger woman, and there is barely a mention of him. There is a mixture of bitterness, envy, and grudge, but also closeness, intimacy, and occasionally warmth and care between the children, little of which shows in their attitude to their mother. At the point where Grandma is inevitably institutionalised her grandson takes it upon himself to take her to ‘her mountain,’ the mountain that was the focus of her gaze in the first scene, the only constant mental feature that she can hold intact in a consciousness that is falling apart. The critical role the grandson will come to play had been carefully prepared from the very beginning. From the start, he seems to have a deep affinity with the old woman who is, like himself, a lost soul, thrown out of normative existence into a whirlwind of estrangement, distress, and terrible loneliness. He sees her medical condition, not as a clinical symptom, but as some kind of extension of his own way of being in the world. A ‘standard’ feature employed in AD films to signify the advanced stage of AD is incontinence in public. When Grandma urinates on the carpet in his mother’s living room, Murat, his aunt and uncle respond with uncontrolled laughter. A comment later on sheds some light on this presumably improper behaviour: ‘I’d urinate on that carpet too,’ Murat tells his uncle, a wanderer himself, with whom he can comfortably confide. When he is robbed, and then almost killed by his robber, the experience of imminent death also informs Murat’s bond with the old woman. The moments these two lost souls spend together; the mute, natural warmth that infuses their time together, literally light the screen as they break bread on the deck of a cruise vessel on the Bosporus. Indeed, the only sunlit scenes in the film take place when they are together. The second sunlit scene is also the closing one in the film, another richly metaphorical scene. Having succumbed to his impulse to avoid placing his grandmother in an institution, Murat has assumed the role of her only caregiver. He grants her wish, ‘take me to my mountain,’ to return to her village. The scenes back in the village form an unusual, almost uncanny mixture of tranquillity, inner piece, and oneness with nature. It is an idyllic picture of grace

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__________________________________________________________________ that at the same time acknowledges the bitter and distressing reality of AD for both bearer and caregiver. The mountain is a dominant presence throughout the film. It provides the framework for the dramatic development, first the yearning to be borne out of a dreadful situation, namely the disease, then as a getaway from a devastating estrangement of a hopeless and helpless social environment (the Istanbul scenes) and finally as a salvation-in-death, as Nusret pleas to Murat to let her disappear again into the mountain before utter forgetfulness takes over. The last shot takes us back to the mountain, but with a change of direction that makes all the difference and produces a poetic, richly metaphorical ending. Murat wakes up to a perfectly clear day, the very clarity at the exact same location of the opening shot, only to find out that Nusret has gone. Looking out he sees her figure down in the valley, on the path leading to the heights. It is another moment of intense concentrated conflict, as his face and hands twitch in an effort to contain the pain. His pain is laid bare before the viewer, with nothing ‘cinematic’ to hang on to. It is his mute promise to help her - against the impulse to rescue her - and the obvious knowledge that the right thing to do is to let her be, that is, let her die and respect her choice of dying. At this moment the camera tilts up slowly, gently drawing towards the direction of the old woman’s final journey. The vertical movement of the camera is a perfect recapitulation and completion of its horizontal movement in the opening shots. In its starting sequence of shots, the film put AD within familial and cultural contexts. 12 The last shot aims higher, literally and metaphorically, moving into a different context and a different sphere, going beyond reality into symbolic space, into the sphere of spiritual redemption.

Notes 1

Kurt Segers, ‘Degenerative Dementias and Their Medical Care in the Movies’, Alzheimer Disease & Associated Disorders 21 (2007): 55-59. 2 Maria I. Sánchez Rubio, ‘“¿Y Tú Quién Eres?” (2006) Memory Loss: A View of Alzheimer’s Disease as Portrayed in the Cinema’, Journal of Medicine and Movies 3 (2007): 135-152. 3 Carrie Hill, ‘Eight Movies about Alzheimer’s Disease You Shouldn’t Miss’, accessed July 10, 2011, http://alzheimers.about.com/od/booksmagsandmovies/tp/AlzheimersMovies.htm. 4 Segers, ‘Degenerative Dementias’, 55-59. 5 Daniel Anderson, ‘Love and Hate in Dementia: The Depressive Position in the Film Iris’, The International Journal of Psychoanalysis 91 (2010): 1289-1297. 6 Sally Chivers, The Silvering Screen. Old Age and Disability in Cinema (Toronto: University of Toronto Press, 2010), 65-69.

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Danny Wedding, Mary A. Boyd and Ryan M. Niemiec, Movies and Mental Illness 3. Using Films to Understand Psychopathology, 3rd Edition (Cambridge, MA: Hogrefe Publishing, 2009), 146-147. 8 Chirstopher M. Filley, ‘“Away from Her” - A Love Story in the Grip of Alzheimer Disease’, Neurology Today 7, Issue 12 (2007): 20 and 22. 9 Segers, ‘Degenerative Dementias’, 58. 10 Chirstopher M. Filley, ‘Caregivers Take Center Stage in “The Savages”. The Savages Directed by Tamara Jenkins, Searchlight Pictures 2001’, Neurology Today 8, Issue 3 (2008): 20. 11 Dov Shmotkin, ‘Happiness in the Face of Adversity: Reformulating the Dynamic and Modular Bases of Subjective Well-Being’, Review of General Psychology 9 (2005): 295. 12 Gömül Dönmez-Colin, ‘Women in Turkish Cinema: Their Presence and Absence as Images and as Image-Makers’, Third Text 42 (2010): 101.

Bibliography Anderson, Daniel. ‘Love and Hate in Dementia: The Depressive Position in the Film Iris’. The International Journal of Psychoanalysis 91 (2010): 1289–1297. Cohen-Shalev, Amir, and Esther-Lee Marcus. ‘Golden Years and Silver Screens: Cinematic Representation of Old Age’. Journal of Aging, Humanities and the Arts 1 (2005): 85–96. Chivers, Sally. The Silvering Screen. Old Age and Disability in Cinema. Toronto: Toronto University Press, 2010. Gömül, Dönmez-Colin. ‘Women in Turkish Cinema: Their Presence and Absence as Images and as Image-Makers’. Third Text 42 (2010): 91–105. Filley, Chirstopher M. ‘“Away from Her” - A Love Story in the Grip of Alzheimer Disease’. Neurology Today 7, Issue12 (2007): 20–22. —––. Caregivers Take Center Stage in “The Savages’’’. Neurology Today 8, Issue 3 (2008): 20. Hill, Carrie. ‘Eight Movies about Alzheimer’s Disease You Shouldn’t Miss’. Accessed July 10, 2011. http://alzheimers.about.com/od/booksmagsandmovies/tp/AlzheimersMovies.htm.

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__________________________________________________________________ Sánchez Rubio, Maria I. ‘“¿Y Tú Quién Eres?” (2006) Memory Loss: A View of Alzheimer’s Disease as Portrayed in the Cinema’. Journal of Medicine and Movies 3 (2007): 135–152. Segers, Kurt. ‘Degenerative Dementias and Their Medical Care in the Movies’. Alzheimer Disease & Associated Disorders 21 (2007): 55–59. Shmotkin, Dov. ‘Happiness in the Face of Adversity: Reformulating the Dynamic and Modular Bases of Subjective Well-Being’. Review of General Psychology 9 (2005): 291–325. Wedding, Danny, Mary A. Boyd, and Ryan M. Niemiec. Movies and Mental Illness 3. Using Films to Understand Psychopathology. 3rd Edition. Cambridge, MA: Hogrefe Publishing, 2009. Amir Cohen-Shalev teaches psychology and education at the Department of Communication, Kinneret College in the Jordan Valley, Israel. His main interests are psychology of the arts, and old age in film. Esther-Lee Marcus is a geriatric physician at Herzog Hospital, Jerusalem, Israel (a geriatric-psychiatric hospital) and teaches at the Hadassah-Hebrew University Faculty of Medicine. Her interests include infectious diseases in the elderly, nutrition in the elderly, ethical issues in the care of the elderly and medical humanities.

Passing Strange: Illness, Shame and Performance Brenda Foley Abstract The strategy in ‘passing’ is that of a carefully constructed outline intended to draw attention away from an interior reality. The task of ‘passing’ is particularly challenging for those who have a slowly progressive illness: no matter how deeply desired the wish to keep the ‘cover’ or how well constructed the performance of ‘passing,’ slippage is inevitable. It is no wonder people choose to keep their illnesses to themselves and find it easier to ‘pass’ than to deal with the consequences of exposure and endless supposition. Once the secret is out, it is impossible to withdraw it. And the link between secrets and shame is a difficult one to untangle. This chapter analyses the palpable tension between the desire to remain hidden and the fear of being found fraudulent on chronic illness and ‘passing.’ Key Words: Passing, illness, performance, cyborg, shame, masquerade, slippage, perception, contradiction. ***** ‘At the seam where body joins culture,’ reminds Mark Jeffreys, ‘every construction of the body begins and ends.’  Any discussion of disability or chronic illness, with its interrogations of dislocated embodied forms, stigmatised identities, and devalued narratives soon exposes the instability of the stitched seam. Culture and body together weave a parallel intent to suppress and keep certain stories from erupting. In that way, a seam carries its trace of a violent action. This chapter on illness, shame, and the concept of passing as a performance technique, both for public consumption and as a private coping strategy, employs theory from disability and performance studies to engage with the tension between the secret and revealed in chronic illness. It draws on perspectives from feminist, disability, and performance activism for the purposes of discussion. ‘Passing’ is understood to contain historical roots in race, gender, and class in this context. In We’re Gonna Die, performance artist/playwright Young Jean Lee voiced a private understanding about pain in public, at the performance venue Joe’s Pub in New York City: It’s not even like you can like rip off the mask and let it all hang out when you’re in private around people who care about you … because there’s only so long you can keep dumping your pain on other people before eventually they start to get fed up. Which makes being in pain an incredibly lonely experience. 

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__________________________________________________________________ Yet, there is no full release even in the private realm, as evident in the subtly voiced guilt expressed in ‘dumping your pain on other people.’ Lee’s performance echoes what Susan Wendell knows in The Rejected Body: People with disabilities and illnesses learn that most people do not want to know about the suffering they experience because of their bodies. Curiosity about medical diagnoses, physical appearance, and the sexual and other intimate aspects of disability is common; interest in the subjective experience is rare.  Lee’s performance highlights some critical aspects of the experience of living with pain on a long-term basis. The first is the use of masking as a device that is both shield and barrier. She urges to ‘rip off the mask’ to reveal some suppressed aspect with visceral imagery for the sake of a performance of normalcy. Lee articulates an attempt to sustain a bifurcated distance between a private world of ‘people who care’ and a public world from which she needs protection. For Lee, her subjective experience is that being in pain is an extraordinarily lonely, isolating space, both in the having it and in the inability to share it. Pernick reminds, ‘any time a culture defines disease or causation, it is making a partly subjective, value-based judgment.’  Often the judgment on chronic illness carries a residual assumption that it is a marker of some essentialism, a carrier of meaning, and an external manifestation of an internal diseased self. In a discussion of the use of autobiography in disability narratives, Finger articulates a paramount fear among many people with chronic illnesses: ‘If you talk about pain, people will say, see, it isn’t worth it. You would be better off dead.’  It is hard to construct a behavioural retort for a public that feels your best option in the face of a present predicament is death. Retreat behind a mask would certainly offer the appearance of a more desirable, alternative coping strategy. Obviously, not all of us with illness or disability will respond with masking as a protective necessity. But many personal accounts of chronic illness report the need to hide or seek safe retreat. Siebers states, ‘closeting involves things not merely concealed but difficult to disclose - the inability to disclose is, in fact, one of the constitutive markers of oppression.’  The compulsory secrecy associated with maintaining an interior life that accepts the reality of pain and an exterior façade of wellness that refutes it has the potential to distort the experience of the pain into a thing of shame. ‘One ironic outcome of passing,’ explains Hillyer, ‘is that, far from reducing the secret to the status of just one feature among many in the passing woman’s life - a principal goal of passing in the first place - it makes the secret the central fact.’  When Lee articulates a sense of guilt in ‘dumping her pain,’ she is expressing a fear that she will be rejected for the admission but also the nagging belief that the pain itself is intrinsically contemptible.

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__________________________________________________________________ Sedgwick differentiates guilt from shame: ‘The conventional way of distinguishing shame from guilt is that shame attaches to and sharpens the sense of what one is, whereas guilt attaches to what one does.’  The illness and pain, sharpened by the loneliness of being unable to share the experience can result in a conflation of illness with identity. The ill-self becomes far more ‘real’ than the masked well-self that is performed for the public. But with illness there can be a complicated negotiation between illness, identity, and shame. Sedgwick states, ‘In fact, shame and identity remain in very dynamic relation to one another, at once deconstituting and foundational, because shame is both peculiarly contagious and peculiarly individuating.’  Shame as an individuating condition can function as a measure by which we derive some perception of self, even as it separates us from our sense of community. Shame can be contagious because it repels others who might not otherwise be affected by the organic pain to cover with shame. To further complicate matters, the rejection of the pain is interpreted as a rejection of the self. The link with the ill-self and shame is a tangled one. What started as a thing that couldn’t be shared shifts dangerously into a thing that shouldn’t be shared. ‘Shame,’ warns Probyn, ‘does not permit any automatic sharing of commonality; rather, it poses deep limits to communication.’  An additional twist to the secrecy, shame, and identity problem in passing is the issue of sustainability. Presuming one has an illness that can, in fact, adhere to some fictive performance of embodied wellness, how long can the performance last? Chronic, progressive illnesses are notoriously wilful, and rarely perform according to scripted texts. In progressive illnesses, it is inevitable that slippage will occur and the mask will drop. When the inevitable happens and passing is no longer an option, obviously, a seismic recalibration will need to take place. There is a conceptual link between passing and disability discourse that suggests a different way to use the appeal of the performance component in passing. In his essay, ‘Disability as Masquerade,’ Siebers examines strategies of passing although, as he notes, he is ‘concerned less with passing in the classic sense than with unconventional uses of disability identity that require a retheorization of passing.’  His approach is especially useful to this discussion because of its concentration on ‘alternative disability passing’ and the focus on masquerade that extends beyond interiority. The uses of masquerade are multiple, and as a concept or strategy masquerade is not inherently ‘better’ than passing but diverges in intent. Whereas passing seeks anonymity, masquerade is about destabilisation and positioning, with an argument for politics and agency. Masquerade acknowledges its spectator as a participant in the event and in doing so differs from the masked performance of passing described by Young Jean Lee in her performance piece. ‘Exaggerating or performing difference, when that difference is a stigma, marks one as a target,’ states Siebers, ‘but it also exposes and resists the prejudices of society.’  Passing is a performance designed to hide

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__________________________________________________________________ difference, whereas masquerade is constructed to draw attention, even distort it to the degree that difference as a category of distinction becomes suspect. As Siebers re-theorises passing through masquerade, Haraway reconceptualises embodiment as a cyborg existence, now part of our cultural lexicon, ‘not afraid of permanently partial identities and contradictory standpoints.’  Linking Siebers and Haraway is the acceptance of the partial and contradictory, two elements that can certainly be extracted from any performance of passing, as well. And equally important, although often forgotten in the more easily remembered visual image of a contemporary cyborg is, as McDowell points out, Haraway’s use of Minh-ha’s ‘concept of “inappropriate/d others” to refer to the positioning of people who refuse to adopt the binary identity of either “self” or “Other” that is offered in dominant theories of identity.’  The performance of masquerade, with its embrace of illuminated and embellished contradictions, allows for the collapse of the false distinction between ill and well selves. A way, at least conceptually, to resist the link between shame, illness, and identity and negotiate the bumpy terrain of negative cultural perceptions is to extrapolate what is productive from passing and combine it with a cyborgian acceptance. Probyn suggests ‘We must use shame to re-evaluate how we are positioned in relation to the past and to rethink how we wish to live in proximity to others.’  In that sense, shame could act as a catalyst to push towards communication, rather than away from it. Understanding illness as a contradictory, performative act that acknowledges spectators can limit the damage inflicted to a sense of self. Feminist, performance, and disability scholars, activists, and artists over the last decades have repeatedly argued against the view of the body as a container of identity but rather assert its function as a site from which multiple, shifting narratives are constructed and performed - an ‘event-horizon,’ as Battersby conceived it.  ‘Performance labors under the vulnerable roof of doubt,’ explains Bailes, ‘tracing the dialectical swing between doubt and hope, never sure of its footing, always out there for the first time, however many times repeated.’  Illness, masquerade, contradiction, ambiguity, are linked in embodied, shapeshifting, particularly temporal ways that can be about something other than secrets and shame. Illness, like performance, can be simultaneously of me, but not me. As Della Pollack states, performance ‘unfolds in time, becoming itself even as it disappears, even as it differs from itself in the play of signification.’  Perhaps the reference at the beginning of this essay to a seam as a kind of border territory should also allow room for its meaning along the lines of Barthes fold or crease as a counter narrative; or, what Kuppers hints at when she writes of a ‘furrow’ as not a boundary but an opening ‘against which figures such as self and body schema emerge.’  Such a reading reclaims the definition of passing as a shifting from one position to another, rather than an attempt at delineation, and

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__________________________________________________________________ aligns it more accurately with the transience and opportunity for renewal at the heart of performance.

Notes 

Mark Jeffreys, ‘Visible Cripple’, in Disability Studies: Enabling the Humanities, eds. Sharon L. Snyder, Brenda Jo Brueggemann and Rosemarie Garland-Thomson (New York: MLA, 2002), 33.  Charles Isherwood, ‘We’re Gonna Die’, NY Times, April 10, 2011, accessed June 10, 2011, http://theater.nytimes.com/2011/04/11/theater/reviews/were-gonnadie-by-young-jean-lee-at-joes-pub-review.html.  Susan Wendell, The Rejected Body: Feminist Philosophical Reflections on Disability (New York: Routledge, 1996), 91.  Martin Pernick, ‘Defining the Defective’, in The Body and Physical Difference, eds. David T. Mitchell and Sharon L. Snyder (Ann Arbor: University of Michigan Press, 1997), 90.  G. Thomas Couser, ‘Signifying Bodies’, in Disability Studies: Enabling the Humanities, eds. Sharon L. Snyder, Brenda Jo Brueggemann and Rosemarie Garland-Thomson (New York: MLA, 2002), 111.  Tobin Siebers, Disability Theory (Ann Arbor: University of Michigan Press, 2008), 97.  Barbara Hillyer, Feminism and Disability (London: University of Oklahoma Press, 1993), 152.  Eve Kosofsky Sedgwick, Touching Feeling: Affect, Pedagogy, Performativity (Durham and London: Duke University Press, 2003), 37.  Ibid., 36.  Elspeth Probyn, Blush: Faces of Shame (Minneapolis: University of Minnesota Press, 2005), 105.  Siebers, Disability Theory, 100.  Ibid., 118.  Donna J. Haraway, ‘A Cyborg Manifesto: Science, Technology, and SocialistFeminism in the Late Twentieth Century’, in Simians, Cyborgs and Women: The Reinvention of Nature (New York: Routledge, 1991), 155.  Linda McDowell, ‘Spatializing Theories of Feminism’, in Body Space, ed. Nancy Duncan (New York: Routledge, 1996), 35.  Probyn, Blush: Faces of Shame, xiv.  Christine Battersby, ‘Her Body/Her Boundaries’, in Feminist Theory and the Body: A Reader, eds. Janet Price and Margrit Shildrick (New York: Routledge, 1999), 351.

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Sarah Jane Bailes, Performance Theatre and the Poetics of Failure (London and New York: Routledge, 2011), 199.  Della Pollack, Exceptional Spaces: Essays in Performance and History (Chapel Hill: University of North Carolina Press, 1998), 26.  Petra Kuppers, The Scar of Visibility: Medical Performances and Contemporary Art (Minneapolis: University of Minn. Press, 2007), 135.

Bibliography Bailes, Sarah J. Performance Theatre and the Poetics of Failure. London and New York: Routledge, 2011. Battersby, Christine. ‘Her Body/Her Boundaries’. In Feminist Theory and the Body: A Reader, edited by Janet Price, and Margrit Shildrick, 341–358. New York: Routledge, 1999. Couser, G. Thomas. ‘Signifying Bodies’. In Disability Studies: Enabling the Humanities, edited by Sharon l. Snyder, Brenda Jo Brueggemann, and Rosemarie Garland-Thomson, 109–117. New York: MLA, 2002. Jeffreys, Mark. ‘Visible Cripple (Scars and Other Disfiguring Displays Included)’. In Disability Studies: Enabling the Humanities, edited by Sharon L. Snyder, Brenda Jo Brueggemann, and Rosemarie Garland-Thomson, 31–39. New York: MLA, 2002. Haraway, Donna J. Simians, Cyborgs and Women: The Reinvention of Nature. New York: Routledge, 1991. Hillyer, Barbara. Feminism and Disability. London: University of Oklahoma Press, 1993. Isherwood, Charles. ‘We’re Gonna Die’. NY Times, April 10, 2011. Accessed June 10, 2011. http://theater.nytimes.com/2011/04/11/theater/reviews/were-gonnadie-by-young-jean-lee-at-joes-pub-review.html. Kuppers, Petra. The Scar of Visibility: Medical Performances and Contemporary Art. Minneapolis: University of Minnesota Press, 2007.

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__________________________________________________________________ McDowell, Linda. ‘Spatializing Theories of Feminism’. In Body Space, edited by Nancy Duncan, 28–44. New York: Routledge, 1996. Pernick, Martin S. ‘Defining the Defective’. In The Body and Physical Difference, edited by David T. Mitchell, and Sharon L. Snyder, 89–110. Ann Arbor: University of Michigan Press, 1997. Pollack, Della. Exceptional Spaces: Essays in Performance and History. Chapel Hill: University of North Carolina Press, 1998. Probyn, Elspeth. Blush: Faces of Shame. Minneapolis: University of Minnesota. Press, 2005. Sedgwick, Eve Kosofsky. Touching Feeling: Affect, Pedagogy, Performativity. Durham and London: Duke University Press, 2003. Siebers, Tobin. Disability Theory. Ann Arbor: University of Michigan Press, 2008. Wendell, Susan. The Rejected Body: Feminist Philosophical Reflections on Disability. New York: Routledge, 1996. Brenda Foley is Professor of Theatre at Marlboro College in Vermont, USA. Her research interests include contemporary theatre, pop culture, gender and disability studies.

Depression, Disgrace and Categorical Distinctions: The Construction of a Stigma-Resistant Self in Published Affective Disorder Narratives Peta Cox Abstract Like most mental illnesses, affective disorders (depression, bipolar, and anxiety disorders) are chronic conditions that often occur throughout a person’s life (either constantly or episodically). Research over the past thirty years has confirmed that people with these conditions experience shame (termed ‘self-stigma’ in the literature) and are often stigmatised and discriminated against by the general population. This chapter will use close textual analysis of Australian affective disorder autobiographies and Internet postings to examine how authors mitigate stigma by using the discursive method of separating desired and undesired entities. In particular, the chapter will look at three such separations: namely, between self and illness, between ‘the mentally ill’ and ‘the mad,’ and between ‘the public’ and those diagnosed with an affective disorder. It will be argued that these separations enable authors to secure and legitimise their sense of self and thereby maintain a valued sense of self in the face of both internal and external stigma. This chapter will examine the tension between the productive nature of these strategies and some of the more problematic implications of such representations. Key Words: Depression, anxiety, bipolar, narrative, rhetoric, autobiography, selfstigma. ***** 1. Introduction Affective disorders are extreme experiences of sadness, happiness, and fear that are clinically identified as bipolar and unipolar depressions as well as the range of anxiety disorders, including post-traumatic stress disorder, obsessive compulsive disorder, generalised anxiety disorder, and phobias. 1 Although the clinical course varies, these conditions are typically chronic. 2 Individuals diagnosed with affective disorders experience higher levels of shame and discrimination than people with other chronic illnesses. 3 As with other conditions that render the sufferer as having ‘questionable moral status,’ people experiencing affective disorders are often believed to be ‘lazy,’ ‘malingerers’ or, in some other way, ‘bad.’ 4 In contemporary western culture, biomedical accounts are the dominant explanation of affective disorder aetiology. 5 Biomedical accounts position mental illness as primarily a biological issue with minimal acknowledgement of situational factors that may be contributing to an individual’s distress. 6 People diagnosed with affective disorders often embrace a biological explanation of their suffering as this

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__________________________________________________________________ explanation can reduce their shame by indicating that mental illnesses are medical conditions that deserve - and require - medical treatment from appropriate health professionals and empathy from loved ones. 7 In addition to biomedical terminology and explanatory frameworks, individuals diagnosed with affective disorders use a variety of rhetorical strategies to help mitigate stigma. Three rhetorical strategies are most common in affective disorder narratives: the separation of self and illness, the hierarchy between ‘the mentally ill’ and ‘the mad,’ and an ingroup/outgroup distinction between those with affective disorders and those without. Each of these strategies relies on presenting a categorical distinction between a desired and an undesired entity. Categorical distinctions are both productive, as they help to reduce individual distress, and socially destructive, as they increase community indifference to certain systemic social justice issues. Rather than seeing categorical distinctions as always negative (as is the case in some critical or political accounts of mental illness stigma), this chapter suggests that the conflict between personal utility and social damage means that these distinctions are ethically ambivalent. 2. Method The ethical ambiguity of these distinctions is demonstrated through examples from a corpus of published Australian affective disorder narratives. The corpus was collated as part of a larger research project examining how Australians construct affective disorder narratives that are personally and socially meaningful. The dataset includes a variety of sources published in Australia between 2000 and 2010, including four autobiographies, one collection of excerpts from autobiographical writing, two published collections of interviews, personal stories from two youth mental health websites and postings on one affective disorder bulletin board. 8 The University of New South Wales, Sydney, provided ethics approval for this project. The data has been analysed using a mixture of thematic and discursive analysis. 9 This methodology has enabled the identification of key themes across the dataset, while simultaneously supporting critical engagement with the rhetorical function of particular illness narratives. 10 3. A Separation: Separation of Self and Illness One of the most common categorical distinctions found in affective disorder narratives is a separation of self and illness. The following two quotations are examples of this type of binary opposition: It was simply a diagnosis. It means I suffer from a treatable, curable illness. I am no longer the problem, rather, it is this illness that I just happen to be a sufferer of. 11

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__________________________________________________________________ Periodically he becomes a stranger. I call this intruder the ‘Fire Breathing, Soul-Destroying Dragon’ … I have to be careful not to make the situation worse by saying the wrong thing ... How I hate this angry, violent Dragon. 12 These quotations demonstrate two forms of the separation of self and illness. In the first quotation, the author uses different pronouns for self and illness (‘I’ and ‘it’), implying that these are two separate and distinct entities. Moreover, when the author states ‘I am no longer the problem, rather it is this illness that I just happen to be a sufferer of,’ the implication is that the illness is an independent agent that acts upon the author without their consent. 13 This separation reduces the blame that the author self-imposes (‘I am no longer the problem’). 14 In the second quotation, the author understands her partner as two separate creatures - the respectful spouse and the violent dragon. According to the author, when her partner is symptomatic, he is not really himself, but is rather a different type of being (a dragon). Thus, the separation of self and illness functions to position the partner as not being responsible for the actions of the dragon during an episode. In comparison with the first quotation where the split is within the individual (so that there are two types of being at the same time), in this quotation the split is temporal (so that the spouse is one type of being at one time, and another type of being at another time). These two quotations demonstrate some of the key ethical ambiguities of this form of categorical distinction. The destructive and productive aspects of this separation will now be examined in turn. A separation of self and illness may do harm for two reasons. First, it may be used to justify behaviours that are morally unacceptable. For instance, in the second quotation, the separation of partner and dragon is used to normalise and justify disrespectful, and potentially violent, interactions. When depression is understood as being a different entity to the person who experiences it, that person is no longer ethically bound to apologise or work towards non-aggressive behaviour, as it was not he who was aggressive. This type of justification of disrespect is becoming widespread, with instances of its use in rationalising domestic violence in the form of financial, physical, sexual, or emotional abuse being repeatedly found on web forums such as the beyondblue bulletin board. 15 Second, a separation of self and illness reduces the ability to think about emotional distress as a symptom of injustice or systemic inequality. Put simply, a separation of self and illness implies that the illness course is independent from the life events of the individual. This means that experiences of homophobia, sexism, racism, or ableism are no longer understood as justified causes of extreme emotional distress. Instead, emotional distress is seen as an expression of an individual pathology divorced from situational factors. This individualisation of distress may result in communities of support for marginalised individuals being

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__________________________________________________________________ eroded as distress is no longer seen as a common experience, and there may be reduced focus by non-government organisations, government departments and politicians on social justice issues such as poverty or discrimination. In this way, the separation of self and illness has the potential to erode community and decrease the moral imperative for communal care of marginalised individuals. Conversely, this type of separation can be productive. At an interpersonal level, the separation of self and illness allows individuals to be more readily forgiven for minor emotional outbursts or other inappropriate - but non-violent - behaviours, and thus supports the continuation of relationships despite the challenges of the affective disorder experience. At an individual level, this form of separation may enable people to maintain their self-esteem by positioning the ‘defective’ aspects as separate from the core self. For many people, this separation allows them to maintain a valued sense of self in the face of extreme suffering. While the separation of self and illness reveals some of the more extreme positive and negative consequences of categorical distinctions, the hierarchy in affective disorder narratives between ‘the mentally ill’ and ‘the mad’ demonstrates some of the more complex rhetorical implications. 4. A Hierarchy: Mentally Ill and the Mad In most affective disorder narratives the ‘mentally ill’ are understood as more morally and socially valuable than ‘the mad.’ Leah refers to this as the difference between individuals who are ‘stressed out crazy’ and those that are ‘crazy crazy.’ 16 The hierarchy is seen in the following four quotations. In a discussion of anxiety symptoms, Meg affirms that she is not really crazy by indicating that she is afraid that others would misconstrue her as being a psycho: I couldn’t disguise the fact that I was shaking uncontrollably. I was afraid people would think I was a drug addict or a psycho. 17 When Petria Thomas says that she ‘wasn’t crazy or anything’ she separates herself from the severely mentally ill: It wasn’t that I was crazy or anything like that; I just needed some time away. 18 By stating that their anxiety was analogous to craziness, a young person on Headspace emphasises that they are not really crazy: I was living with all kinds of irrational fears, and had many days where life seemed very dark and I felt like I was going crazy. 19

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__________________________________________________________________ Finally, in a statement that normalises her anxiety by separating her experience from those of freaks and crazy people, an author on Reach Out writes: Sometimes I still get anxiety attacks, but I know how [to] deal with them. I’m not a freak and I’m not crazy. 20 Thus, in each of these examples, the author’s own value and self-esteem is premised on them being (merely) mentally ill and not ‘actually’ crazy. These quotations indicate an intriguing aspect of the hierarchy of ‘the mentally ill’ and ‘the mad:’ namely, that ‘madness’ is a constantly deferred identity. Although there are exceptions, the logic of this deferral is as follows: to members of the general population who are non-symptomatic, everyone with a mental illness diagnosis might be considered mad; to those who have been diagnosed with a mental illness, only individuals diagnosed with psychosis might be mad; to those who experience psychosis, only those who are sectioned are deemed mad; to individuals who are sectioned, only those who believe that we all need to wear aluminium hats are mad; and, to those who believe that everyone needs to wear aluminium hats, everyone who does not realise the importance of aluminium hats is just plain balmy. This ‘throwing down’ of madness to a more stigmatised group helps to secure an author’s sense of self and protects them against stigma. While this is productive at an individual level, it is destructive when examined socially. Although it may initially appear that this ‘throwing down’ is harmless as it is constantly deferring the stigmatised identity (i.e., the person who says that those with psychosis are mad is not psychotic and does not need to mitigate the stigma of psychosis), such actions multiply the stigma that must be negotiated by those further down the deferral line. Thus, the use of this hierarchy reinscribes the stigma of mental illness by reaffirming that being mad is bad. A similar pattern of positive and negative consequences is also evident in the ingroup/outgroup distinction between those who experience depression and those who do not. 5. ‘Us’ and ‘Them’: The Public and Those Diagnosed An ingroup/outgroup distinction is a separation between ‘us’ and ‘them:’ in this case, between those who experience affective disorders and those who do not. The ingroup/outgroup distinction is often used in affective disorder narratives when an author wishes to explain why they did not receive the sympathetic support they expected from friends, family, or acquaintances. While at times this distinction is used to explain the behaviour of a particular individual, it is more commonly used in discussions of the community at large. The following example is from an author who makes a distinction between herself and her community during a discussion of reactions to her diagnosis:

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__________________________________________________________________ They say, “Oh, you’re not mad” (well, not all the time!), or ““You can’t have manic depression”. Do they think I made it up? Do they say that to a diabetic? From some I get patronising tones. Is it to denote quite firmly that they are different/OK/even better than me, because they don’t have a mental illness? Do they think I chose this? Do they see it as a weakness on my part? Do they blame me for having a mental illness? 21 Within this quotation, the author’s distinction between herself and her community functions to position the community as holding false beliefs about bipolar disorder. The combination of the author’s repeated use of the phrase ‘they think’ (in comparison with phrases such as ‘they know’ or ‘they realise’) and her sarcastic tone positions the truth as being the opposite to the beliefs of her community. Put differently, the author’s rhetoric functions to affirm that, in reality, it is not her fault, it is not a choice or weakness, and it is not appropriate to blame her for her condition. In this way, a separation between those with depression and those without is mapped onto a distinction between those who are knowledgeable and those who are ignorant. This in turn enables the author to discredit the claims of her community and refute their stigmatising beliefs. In another example of an author responding to ‘unhelpful’ attributions, Millisa Deitz says: There will always be people who think like this - that those with depression should be able to rise above it, or take up a hobby, or be thankful for what they have. These people may never understand. Mostly, when it comes to depressives, it takes one to know one. 22 This quotation highlights one of the key functions of the distinction between people with and without affective disorders. Specifically, this separation allows authors to explain discriminatory behaviour without demonising the person who acts in a disrespectful manner. Put simply, this understanding enables authors to say ‘Oh, he hasn’t experienced depression, that’s why he does not understand.’ For individuals whose loved ones are not supportive, this type of explanation allows them both to acknowledge an inappropriate response and continue to love their friend or family member. Again, the ingroup/outgroup distinction is not purely ‘good’ or ‘bad.’ The distinction is useful because it explains why some people do not respond empathetically to individuals with affective disorders. It is particularly helpful as an explanatory framework because it can be used to avoid attributing blame for the misunderstanding: ‘Joe does not understand depression because he hasn’t been through it’ is an explanation that avoids blame or distress far more readily than

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__________________________________________________________________ ‘Joe does not understand depression because he is ignorant/horrible’ (externalised blame) or ‘Joe does not understand depression because only freaks are depressed’ (internalised blame). However, the social ease of this explanation comes at a cost: not only does it position individuals diagnosed with an affective disorder as a distinct, and implicitly less valued, category of person, it also normalises and justifies discrimination and stigma, i.e., those who have never experienced an affective disorder will, because they can never ‘know’ about it, continue to discriminate against those who identify as having an affective disorder. Thus, as with the two previous forms of categorical distinction, at the personal level, an ingroup/outgroup distinction can relieve personal distress and allow interpersonal relationships to continue in periods of emotional distress. However, at a societal level, this type of distinction encourages discrimination and thereby undermines principles of universal human dignity and de-motivates actions towards social justice. 6. Discussion and Conclusion While it may initially appear that the ‘answer’ to the ethical ambiguity of these categorical distinctions is to choose social over individual good (or vice versa), such a choice is impossible. Personal and communal suffering are knotted together, so that relieving personal suffering causes more social suffering, and relieving social suffering causes, at least temporarily, increases in personal suffering. That is, the narratives that people tell to relieve shame and discrimination inadvertently reinscribe the very stigma that needs to be relieved. In addition, if individuals begin telling alternative affective disorder narratives which distance them from dominant rhetorical strategies, they may experience increases in personal distress as they will no longer have access to several effective ways of securing a stigmaresistant conception of self. Despite these complications, change is possible. Once we acknowledge that categorical distinctions are destructive to those diagnosed with affective disorders as a group, while simultaneously often helpful to individuals so diagnosed, we can then begin to identify when it is, and is not, realistic to move away from affective disorder narratives based on categorical distinctions. It is both unfair and unrealistic to expect individuals who are experiencing extreme emotional distress (i.e., those who are symptomatic) to question or challenge the dominant cultural understandings of such conditions. Rather, it is the moral responsibility of those whose emotional suffering is not all-consuming to begin the process of opening spaces where binary oppositions are less prevalent - by telling and hearing complex and ambivalent stories of emotional distress.

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Notes 1

International Society for Affective Disorders, ‘ISAD Welcome Page’, ISAD, https://www.isad.org.uk/default.asp. 2 American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders: DSM-IV-TR, 4th edition (Washington, DC: American Psychiatric Association, 2000). 3 Lisa Barney, et al., ‘Stigma about Depression and Its Impact on Help-Seeking Intentions’, Australian and New Zealand Journal Psychiatry 40 (2006); Dennis Blair and V.A. Ramones, ‘The Undertreatment of Anxiety: Overcoming the Confusion and Stigma’, Journal of Psychosocial Nursing and Mental Health Services 34, No. 6 (1996); Patrick Corrigan and Amy Watson, ‘The Paradox of Self-Stigma and Mental Illness’, Clinical Psychology: Science and Practice 9, No. 1 (2006); Sue Estroff, David Penn and Julie Toporek, ‘From Stigma to Discrimination: An Analysis of Community Efforts to Reduce the Negative Consequences of Having a Psychiatric Disorder and Label’, Schizophrenia Bulletin 30, No. 3 (2004); Partamin Farzad Nawabi, ‘Lifting the Veil on Invisible Identities: A Grounded Theory of Self-Disclosure for College Students with Mood Disorders’ (PhD, University of Maryland, College Park, 2004); Kathleen Griffiths, Helen Christensen and Amy Jorm, ‘Predictors of Depression Stigma’, BMC Psychiatry 8, No. 25 (2008); JianLi Wang and Daniel Lai, ‘The Relationship between Mental Health Literacy, Personal Contacts and Personal Stigma against Depression’, Journal of Affective Disorders 110, No. 1-2 (2008). 4 Kathy Charmaz, ‘Stories of Suffering: Subjective Tales and Research Narratives’, Qualitative Health Research 9, No. 3 (1999); Milissa Deitz, My Life as a Side Effect: Living with Depression (Sydney: Random House Australia, 2004), 125; Tessa Wigney, Kerrie Eyers and Gordon Parker, Journeys with the Black Dog: Inspirational Stories of Bringing Depression to Heel (Allen & Unwin Academic, 2008), 138 and 144; G. Cowan, Back from the Brink: Australians Tell Their Stories of Overcoming Depression (Gordon, NSW: Bird in Hand Media, 2007), 127; Penelope Rowe and Jessica Rowe, The Best of Times, the Worst of Times: Our Family’s Journey with Bipolar (Sydney: Allen and Unwin, 2005), 166; Craig Hamilton, Broken Open (Sydney: Bantam, 2004), 30, Marianne Broug, Seventeen Voices: Life and Wisdom from inside ‘Mental Illness’ (South Australia: Wakefield Press, 2008), 38. 5 David Healy, Mania: A Short History of Bipolar Disorder (Johns Hopkins University Press, 2008); Emily Martin, Bipolar Expeditions: Mania and Depression in American Culture (Princeton: Princeton University Press, 2007). 6 Simone Fullagar, ‘Sites of Somatic Subjectivity: E-Scaped Mental Health Promotion and the Biopolitics of Depression’, Social Theory & Health 6, No. 4 (2008); Simone Fullagar, ‘Negotiating the Neurochemical Self: Anti-Depressant

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__________________________________________________________________ Consumption in Women’s Recovery from Depression’, Health 13, No. 4 (2009); Michelle LaFrance, ‘A Bitter Pill: A Discursive Analysis of Women’s Medicalized Accounts of Depression’, Journal of Health Psychology 12, No. 1 (2007); Nick Crossley, ‘Prozac Nation and the Biochemical Self’, Debating Biology: Sociological Reflections on Health, Medicine and Society (2003); Tanya Luhrmann, Of Two Minds: An Anthropologist Looks at American Psychiatry (New York: Vintage Books, 2001); Gary Greenberg, Manufacturing Depression: The Secret History of a Modern Disease (New York: Simon and Schuster, 2010). 7 Anthony Jorm and Kathleen Griffiths, ‘The Public’s Stigmatising Attitudes Towards People with Mental Disorders: How Important Are Biomedical Conceptualizations’, Acta Psychiatrica Scandinavica 118 (2008); Jeffrey Pyne, et al., ‘Relationship between Perceived Stigma and Depression Severity’, Journal of Nervous & Mental Disease 192, No. 4 (2004); Lisa Blackman, ‘Psychiatric Culture and Bodies of Resistance’, Body & Society 13, No. 2 (2007); R. Schreiber and G. Hartrick, ‘Keeping It Together: How Women Use the Biomedical Explanatory Model to Manage the Stigma of Depression’, Issues in Mental Health Nursing 23, No. 2 (2002). 8 Ken Haley, Emails from the Edge: A Journey through Troubled Times (Yarraville: Transit Lounge, 2006); Wigney, Eyers and Parker, Journeys with the Black Dog: Inspirational Stories of Bringing Depression to Heel; Rowe and Rowe, The Best of Times, the Worst of Times: Our Family’s Journey with Bipolar; Broug, Seventeen Voices: Life and Wisdom from inside ‘Mental Illness’; Cowan, Back from the Brink: Australians Tell Their Stories of Overcoming Depression; Deitz, My Life as a Side Effect: Living with Depression; Hamilton, Broken Open, Centre for Mental Health Research. 9 Jodi Aronson, ‘A Pragmatic View of Thematic Analysis’, The Qualitative Report 2, No. 1 (1994); Virginia Braun and Victoria Clarke, ‘Using Thematic Analysis in Psychology’, Qualitative Research in Psychology 3, No. 2 (2006); Mary Bucholtz, ‘Reflexivity and Critique in Discourse Analysis’, Critique of Anthropology 21, No. 2 (2001); Richard Elliott, ‘Discourse Analysis: Exploring Action, Function and Conflict in Social Texts’, Marketing Intelligence & Planning 14, No. 6 (1996); Teun Van Dijk, ‘Critical Discourse Analysis and Conversation Analysis’, Discourse & Society 10, No. 4 (1999). 10 Michelle Lafrance, Women and Depression: Recovery and Resistance (New York and London: Taylor & Francis, 2009). 11 Wigney, et al., Journeys with the Black Dog: Inspirational Stories of Bringing Depression to Heel, 103. 12 Ibid., 178. 13 Darin Weinberg, ‘The Social Construction of Non-Human Agency: The Case of Mental Disorder’, Social Problems 44, No. 2 (1997).

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__________________________________________________________________ 14

There is a certain irony in using a separation of self and illness to reduce the stigma of mental illness. As Dominique notes, ‘saying “I am not my illness,” suggests a multiplicity of selves is operating’ a split that may, in other circumstances, be indicative of the kinds of subjectivities the author is trying to distance from Jill Dominique, ‘The Experience of Mood Disorders through the Words of Autobiographers and Their Readers’ (PhD, Saybrook University, 2005), 13. 15 beyondblue denied permission for the postings on their bulletin board to be analysed in my research. As such, although I am familiar with the content of the bulletin board, analysis of this material cannot be performed in this chapter. However, the beyondblue website is a public site and I would encourage anyone interested in the use of depression as a justification for interpersonal violence to go to the website: www.beyondblue.org.au. 16 Broug, Seventeen Voices: Life and Wisdom from inside ‘Mental Illness’, 31. 17 Ibid., 275. 18 Cowan, Back from the Brink: Australians Tell Their Stories of Overcoming Depression, 86. 19 headspace: National Youth Mental Health Foundation, ‘Headspace.’ 20 The Inspire Foundation, ‘Reachout.’ 21 Wigney, Eyers, and Parker, Journeys with the Black Dog: Inspirational Stories of Bringing Depression to Heel, 94. 22 Deitz, My Life as a Side Effect: Living with Depression, 6.

Bibliography Aronson, Jodi. ‘A Pragmatic View of Thematic Analysis’. The Qualitative Report 2, No. 1 (1994): 1–3. Barney, Lisa, Kathleen Griffiths, Anthony Jorm, and Helen Christensen. ‘Stigma About Depression and Its Impact on Help-Seeking Intentions’. Australian and New Zealand Journal Psychiatry 40 (2006): 51–54. Blackman, Lisa. ‘Psychiatric Culture and Bodies of Resistance’. Body & Society 13, No. 2 (2007): 1–23. Blair, Dennis, and V.A. Ramones. ‘The Undertreatment of Anxiety: Overcoming the Confusion and Stigma’. Journal of Psychosocial Nursing and Mental Health Services 34, No. 6 (1996): 9–18.

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__________________________________________________________________ Braun, Virginia, and Victoria Clarke. ‘Using Thematic Analysis in Psychology’. Qualitative Research in Psychology 3, No. 2 (2006): 77–101. Broug, Marianne. Seventeen Voices: Life and Wisdom from inside ‘Mental Illness’. South Australia: Wakefield Press, 2008. Bucholtz, Mary. ‘Reflexivity and Critique in Discourse Analysis’. Critique of Anthropology 21, No. 2 (2001): 165–183. Charmaz, Kathy. ‘Stories of Suffering: Subjective Tales and Research Narratives’. Qualitative Health Research 9, No. 3 (1999): 362–382. Corrigan, Patrick, and Amy Watson. ‘The Paradox of Self-Stigma and Mental Illness’. Clinical Psychology: Science and Practice 9, No. 1 (2006): 35–53. Cowan, Graeme. Back from the Brink: Australians Tell Their Stories of Overcoming Depression. Gordon, NSW: Bird in Hand Media, 2007. Crossley, Nick. ‘Prozac Nation and the Biochemical Self’. Debating Biology: Sociological Reflections on Health, Medicine and Society (2003): 245–258. Deitz, Milissa. My Life as a Side Effect: Living with Depression. Sydney: Random House Australia, 2004. Dominique, Jill. ‘The Experience of Mood Disorders through the Words of Autobiographers and Their Readers’. PhD diss., Saybrook University, 2005. Elliott, Richard. ‘Discourse Analysis: Exploring Action, Function and Conflict in Social Texts’. Marketing Intelligence & Planning 14, No. 6 (1996): 65–68. Estroff, Sue, David Penn, and Julie Toporek. ‘From Stigma to Discrimination: An Analysis of Community Efforts to Reduce the Negative Consequences of Having a Psychiatric Disorder and Label’. Schizophrenia Bulletin 30, No. 3 (2004): 493– 509. Farzad Nawabi, Partamin. ‘Lifting the Veil on Invisible Identities: A Grounded Theory of Self-Disclosure for College Students with Mood Disorders’. PhD diss., University of Maryland, College Park, 2004.

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__________________________________________________________________ Fullagar, Simone. ‘Negotiating the Neurochemical Self: Anti-Depressant Consumption in Women’s Recovery from Depression’. Health 13, No. 4 (2009): 389. —––. ‘Sites of Somatic Subjectivity: E-Scaped Mental Health Promotion and the Biopolitics of Depression’. Social Theory & Health 6, No. 4 (2008): 323–341. Greenberg, Gary. Manufacturing Depression: The Secret History of a Modern Disease. New York: Simon and Schuster, 2010. Griffiths, Kathleen, Helen Christensen, and Anthony Jorm. ‘Predictors of Depression Stigma’. BMC Psychiatry 8, No. 25 (2008). Haley, Ken. Emails from the Edge: A Journey through Troubled Times. Yarraville: Transit Lounge, 2006. Hamilton, Craig. Broken Open. Sydney: Bantam, 2004. headspace: National Youth http://www.headspace.org.au/.

Mental

Health

Foundation.

‘Headspace’.

Healy, David. Mania: A Short History of Bipolar Disorder. Johns Hopkins University Press, 2008. International Society for Affective Disorders. ‘Isad Welcome Page’. ISAD, https://www.isad.org.uk/default.asp. Jorm, Anthony, and Kathleen Griffiths. ‘The Public’s Stigmatising Attitudes Towards People with Mental Disorders: How Important Are Biomedical Conceptualizations’. ACTA Psychiatrica Scandinavica 118 (2008): 315–321. LaFrance, Michelle. ‘A Bitter Pill: A Discursive Analysis of Women’s Medicalized Accounts of Depression’. Journal of Health Psychology 12, No. 1 (2007): 127–140. Lafrance, Michelle. Women and Depression: Recovery and Resistance. New York and London: Taylor & Francis, 2009. Luhrmann, Tanya. Of Two Minds: An Anthropologist Looks at American Psychiatry. New York: Vintage Books, 2001.

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__________________________________________________________________ Martin, Emily. Bipolar Expeditions: Mania and Depression in American Culture. Princeton: Princeton University Press, 2007. Pyne, Jeffrey, Eugene Kuc, Paul Schroeder, John Fortney, Mark Edlund, and Greer Sullivan. ‘Relationship between Perceived Stigma and Depression Severity’. Journal of Nervous & Mental Disease 192, No. 4 (2004): 278–283. Rowe, Penelope, and Jessica Rowe. The Best of Times, the Worst of Times: Our Family’s Journey with Bipolar. Sydney: Allen and Unwin, 2005. Schreiber, Rita, and Gwen Hartrick. ‘Keeping It Together: How Women Use the Biomedical Explanatory Model to Manage the Stigma of Depression’. Issues in Mental Health Nursing 23, No. 2 (2002): 91–105. Van Dijk, Teun. ‘Critical Discourse Analysis and Conversation Analysis’. Discourse & Society 10, No. 4 (1999): 459–460. Wang, JianLi, and Daniel Lai. ‘The Relationship between Mental Health Literacy, Personal Contacts and Personal Stigma against Depression’. Journal of Affective Disorders 110, No. 1-2 (2008): 191–196. Weinberg, Darin. ‘The Social Construction of Non-Human Agency: The Case of Mental Disorder’. Social Problems 44, No. 2 (1997): 217–234. Wigney, Tessa, Kerrie Eyers, and Gordon Parker. Journeys with the Black Dog: Inspirational Stories of Bringing Depression to Heel. Allen & Unwin Academic, 2008. Peta Cox is a PhD candidate in the School of Public Health and Community Medicine, Faculty of Medicine, University of New South Wales, Sydney. Her research concerns how Australians understand and represent their experiences of mental illness.

Section 4 The Caregivers’ Stories

Improvisation: Five Capacities for Coping with Trauma and Loss in Chronic Illness Patricia Fennell, John Esposito and Anne Fantauzzi Abstract To live fully in spite of the changes and losses that chronic illnesses bring, we must learn to accept our new circumstances and find meaning in our experience. The arts, whether through music, humour, movement, writing, painting, or other means, help people with chronic illnesses develop acceptance and meaning. People usually experience four phases in the process of adapting to live with chronic illness: Crisis, Stabilisation, Resolution, and Integration, to navigate on their way to defining a new self and a new life after the onset of chronic illness. It is in the third phase, Resolution, where individuals recognise deeply that their old life will not return. They begin to find meaning in their experience, establish an authentic new self and develop a supportive, meaningful philosophy. The tools of improvisation offer a pathway toward establishing meaning in the chronic illness experience. There are five capacities of improvisation that are explored through the arts and that people with chronic illnesses need to acquire to establish acceptance and meaning in their changed circumstances. These capacities are 1) Tolerate ambiguity, 2) Take risks, 3) Become curious, 4) Take action, and 5) Innovate. The five capacities offer tools to help clinicians and their clients cull prior experiences for better assessment of present circumstances and to create innovative ways to respond to change. Key Words: Chronic illness, art, innovation, trauma, Fennell Four Phase Model, innovation, coping, resolution, improvisation. ***** 1. A Paradigm Shift Over the past several decades, medicine has undergone a paradigm shift from an acute to a chronic model of illness. This transformation is due to several factors, including advances in medicine that have transformed once fatal illnesses into long-term chronic conditions, and has resulted in an aging, and increasingly ill, population. Many people are now living for decades with chronic illnesses that would have been fatal to previous generations. This is not a short-term trend. The World Health Organization reported in June 2011 that between 15.6% and 19.4% of people worldwide have a disability; and between 2.2% and 3.8% have disabilities considered ‘severe.’ 1 These numbers have increased since the 1970s, when 10% of the world’s population had a disability, and are expected to continue rising due to factors including:

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__________________________________________________________________    

the aging of the world’s population (as living into old age increases the likelihood of having a chronic illness) public health advances, such as availability of cleaner water and maternal/pediatric health care that have decreased childhood mortality changes in diet and lifestyle that have increased the prevalence of obesity-associated conditions such as diabetes and cardiovascular disease, and improvements in medical care that have transformed previously fatal illnesses, such as cancer, stroke, and HIV/AIDS, into chronic conditions.

More than acute illnesses, chronic conditions require coordination of care among a multidisciplinary, interdisciplinary team of professionals, laypeople, and community members. As a result, health care systems are struggling to develop chronic comprehensive case management methods to supplant the acute clinical treatment models that have worked for many generations, but largely fail today’s long-term illness patients. 2. Chronic Illness and Trauma The experience of living with a chronic illness, often defined by symptoms over signs, and individual perception rather than laboratory tests, can be highly traumatic to the patient, as well as to his or her family and loved ones. Patients may suffer from social stigma, economic losses, and lack of knowledge and understanding about their condition. In addition, the unpredictability and chronicity of waxing and waning symptoms, and the patterns of relapse and remission can be extremely frustrating to all parties. Chronic illness-associated trauma can stem from several sources: 





Disease/Syndrome Trauma: Realisation that something is profoundly wrong and that what was once considered ‘normal’ is no longer so. Lifestyle, livelihood, functioning, and predictability are some of the losses that can result in trauma. Iatrogenic Trauma: Health care providers who question the veracity or severity of a person’s symptoms, or suggest that the person is morally or mentally weak, or somehow responsible for their illness (or inability to recover) can precipitate trauma in patients. Cultural Trauma: Bias against the chronically ill is common in our culture and may be fostered by sensational media accounts of unexpected recovery, preliminary research

Patricia Fennell, John Esposito and Anne Fantauzzi 137 __________________________________________________________________





findings, or ‘against the odds’ performance by athletes or other luminaries. Friends, family members, colleagues, and general society can show fear, misunderstanding, or bias toward the chronically ill and their disabilities. As a result of these attitudes, many people find themselves without jobs, housing, friends, or other support. Vicarious Trauma: People who live with and care for the chronically ill can also suffer trauma. Stigmas conveyed by health care providers, the media, and general society against the chronically ill can result in traumas in family members and friends who support them. The need to take time from work to accompany their loved one to medical appointments can result in job loss or career stagnation. Pre-Morbid/Co-Morbid Trauma: Serious trauma may exacerbate illness symptoms. These might include a death in the family or natural disaster. In addition, pre-morbid trauma, such as an auto accident, may decrease resilience and therefore may make it more difficult to cope with additional traumas.

3. Four Phases of Chronic Illness Evidence-based research has established that people experience four phases in the process of adapting to chronic illness. These phases describe a predictable passage that patients navigate on their way to defining a new self and a new life after the onset of chronic illness. The Fennell Four-Phase Model (FFPM) addresses three domains across four phases: the physical/behavioural, the psychological, and the social/interactive. 2 In Phase 1, Crisis, the individual moves from onset of illness, which may be specifically detectable or may happen gradually, to an emergency period when the patient knows that something is seriously wrong. The task of the individual, caregivers, and clinicians during this phase is to cope with and contain urgency and trauma. In Phase 2, Stabilization, the individual discovers that he or she fails, sometimes repeatedly, to return to normal regardless of interventions or behaviour. The task in this phase is to initiate stabilisation and life restructuring. In Phase 3, Resolution, the individual recognises deeply that his or her old life will never return. Early in this phase, many experience significant grief and loss. The task of this Phase is to begin establishing an authentic new self and start developing a supportive, meaningful philosophy. In Phase 4, Integration, the individual defines a new self in which illness may be an important factor, but it is not the only or even the primary one in his or her life. Integration of the illness into a meaningful life is the goal the individual seeks.

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__________________________________________________________________ 4. Finding Meaning in Suffering It is in the third phase, Resolution, where individuals recognise deeply that their old life will not return. They begin to find meaning in their experience, establish an authentic new self and develop a supportive, meaningful philosophy. The tools of improvisation offer a pathway toward establishing meaning in the chronic illness experience. To live fully in spite of the changes and losses that chronic illnesses bring, individuals must learn to accept their new circumstances and find meaning in their experience. The arts, whether through music, humor, movement, writing, painting, or other methods, help people with chronic illnesses develop acceptance and meaning. Improvisation, the skill of top artists, can offer new ways to respond better to change. In improvisation, we use our existing knowledge and skills to create something new in an unplanned, innovative way. Authenticity is the bedrock, the guiding principle of finding meaning. While authenticity can be very difficult to define, it is instantly recognisable as honest, truthful, and genuine. 5. Improvisation, Creation and Innovation The ‘Five Capacities of Improvisation’ model states that Improvisation leads to Creation, and Creation leads to Innovation. It recognizes that change can be either good or bad and also that it is inevitable. It also presupposes that improvisation, creation, and innovation help us respond more effectively to that inevitable change. Creation requires active reflection, action, and authenticity and, therefore, it, in itself, is a powerful stance against the helplessness which results from trauma, illness, and ambiguity. 6. Five Capacities of Improvisation We have identified five capacities of improvisation that are explored through the arts and which help people with chronic illnesses establish acceptance and meaning in their changed circumstances. 3 A. Tolerate Ambiguity This capacity recognises that ambiguity is unavoidable and it is possible to survive in spite of not knowing what lies ahead. Here, people take the time and allow themselves to feel uncomfortable in order to get where they need to be. They find the patience to wait for the right answer, rather than the quick answer, even if it is difficult. People learn how to do the ‘emotional heavy lifting’ that leads to the wisdom of appreciating the value of the unknown and the understanding that something good can come of even the worst of circumstances.

Patricia Fennell, John Esposito and Anne Fantauzzi 139 __________________________________________________________________ B. Become Curious This capacity understands that change is an opportunity and that curiosity leads to innovation and change. Unfortunately, our culture sometimes squelches children’s curiosity, wonder, and risk-taking, often pushing people into conformity. A culture’s toleration of questioning common knowledge, customs, and expectations is influenced by gender, race and social class. For example, someone from the upper, educated and/or wealthy class might be praised for ingenuity in asking why something is done a certain way, while someone from the lower, uneducated, poorer class might be accused of insubordination. Curiosity may have positive (‘childlike wonder’), negative (nosy, ‘killed the cat’), and ambiguous (questioning authority) connotations; context and culture are determining factors on how curiosity is perceived. C. Take Risks Risk taking can be very difficult for many people. The very act of ‘sticking your neck out,’ intentionally engaging in activities without a certain outcome, is uncomfortable. But without risk, there is no reward. To be successful, risk taking should be conscious or planned, versus unconscious or impulsive. Calculated risk taking is informed by a person’s understanding of his or her physical, mental, financial, and other limits and abilities. It also is engaged in a manner that minimizes shame, embarrassment, or fear of failure, and has a pre-planned ‘exit strategy’ in case things do not go as planned. An important consideration in the evaluation of what risk to take is a thorough evaluation of the traditional forms, interventions, or strategies that would be, or already have been, typically utilised. Can they be utilised or referenced in your current situation? Can options/possibilities be reengineered within the traditional frameworks and approaches? Or is it time to stretch these forms/constructs to the point of innovation? D. Take Action To improvise - to respond in the moment to present circumstances - requires making a choice to take action. This statement or choice results in an action. This action then produces a reaction, to which you must then react, and the cycle continues. The painter chooses to pick up a paintbrush. Then he decides what colour to use. Some people wait for that ‘light bulb,’ the ‘a-ha moment’ before making a choice to act; waiting for certainty may mean missed opportunities and stagnation. E. Innovate Once a person been curious, taken risks, made choices, and taken action, innovation is the result. It is important to recognise that the result - an idea, a paragraph, a picture, a song - whether small or large, is a victory. People should consider tapping into their community to get outside help, such as training,

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__________________________________________________________________ instruction, or assistance, to further or improve their creative expression. In all cases, the chronically ill need to accommodate their limits and abilities throughout the capacities. 7. Using the Five Capacities to Respond to Change Using the five capacities to respond to uncertainty, crisis, or change requires first defining the present situation, problem, or crisis. By understanding which capacities are strengths, and which are weaknesses, you can ask for help where needed. Through artistic expression - music, visual art, writing, drama, etc. - you can apply the capacities to the crisis or trauma you are experiencing. An attitude of persistence and fortitude is a key element of the five capacities. This willingness to fail is crucial in developing the self-reliance and resilience in the face of change, trauma, and crisis that are integral with the chronic illness experience. The five capacities also recognise the importance of community, and the ability to borrow from the strength of others when you do not feel you can persevere.

Notes 1

World Health Organization and World Bank Group, ‘World Report on Disability 2011’ (Geneva: World Health Organization), accessed July 17, 2011, http://www.who.int/disabilities/world_report/ 2011/report/en/index.html. 2 Patricia A. Fennell and Lucinda Bateman, ‘Matching Best Medical Practices to Phases of Illness’, Lecture: IACFS Conference, Salt Lake City, Utah, October 9, 2004; Patricia A. Fennell, Leonard A. Jason and Susan Klein, ‘Measuring Phases of Recovery in Patients with CFS’, Journal of Chronic Fatigue Syndrome 5 (1999): 88-89; Leonard A. Jason, Guy Fricano, Renee R., Taylor, Jane Halpert and Patricia A. Fennell, ‘Chronic Fatigue Syndrome: An Examination of the Phases’, Journal of Clinical Psychology 56 (2000): 1497-1508; Leonard A. Jason, Patricia A. Fennell, Renee R. Taylor, Guy Fricano and Jane Halpert, ‘An Empirical Verification of the Fennell Phases of the CFS Illness’, Journal of Chronic Fatigue Syndrome 6 (2000): 47-56; Leonard A. Jason, Patricia A. Fennell, Susan Klein, Guy Fricano and Jane Halpert, ‘An Investigation of the Different Phases of the CFS Illness’, Journal of Chronic Fatigue Syndrome 5 (1999): 35-54. 3 Patricia A. Fennell, ‘When Illness Tears Your Soul, Art Gives It Back: Finding Meaning in Illness through Artistic Expression’, Lecture, DePaul School of New Learning Chronic Illness Initiative Symposium: Chronic Illness & the Arts, Chicago, IL, May 12, 2010; Patricia A. Fennell and Lynn Royster, ‘Working the Third Phase: Meaning, Community and the Arts’, Lecture, DePaul School of New Learning Chronic Illness Initiative Symposium: Chronic Illness & the Arts, Chicago, IL, May 12, 2010.

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Bibliography Fennell, Patricia A. Managing Chronic Illness: The Four Phase Approach. New York: John Wiley and Sons Inc., 2003. —––. The Chronic Illness Workbook: Strategies and Solutions for Taking Back Your Life. Second Edition. Albany, N.Y.: Albany Health Management Publishing, 2006. Fennell, Patricia A. ‘When Illness Tears Your Soul, Art Gives It Back: Finding Meaning in Illness through Artistic Expression’. Lecture, DePaul School of New Learning Chronic Illness Initiative Symposium: Chronic Illness & the Arts. Chicago, IL, May 12, 2010. Fennell, Patricia A., and Lynn Royster. ‘Working the Third Phase: Meaning, Community and the Arts’. Lecture, DePaul School of New Learning Chronic Illness Initiative Symposium: Chronic Illness & the Arts. Chicago, IL, May 12, 2010. Fennell, Patricia A., and Lucinda Bateman. ‘Matching Best Medical Practices to Phases of Illness’. Lecture, IACFS Conference, October 9, 2004. Fennell, Patricia A., Leonard A. Jason, and Susan Klein. ‘Measuring Phases of Recovery in Patients with CFS’. Journal of Chronic Fatigue Syndrome 5 (1999): 88–89. Jason, Leonard A., Patricia A. Fennell, Susan Klein, Guy Fricano, and Jane Halpert. ‘An Investigation of the Different Phases of the CFS Illness’. Journal of Chronic Fatigue Syndrome 5 (1999): 35–54. Jason, Leonard A., Patricia A. Fennell, Renee R. Taylor, Guy Fricano, and Jane Halpert. ‘An Empirical Verification of the Fennell Phases of the CFS Illness’. Journal of Chronic Fatigue Syndrome 6 (2000): 47–56. Jason, Leonard A., Guy Fricano, Renee R. Taylor, Jane Halpert, and Patricia A. Fennell. ‘Chronic Fatigue Syndrome: An Examination of the Phases’. Journal of Clinical Psychology 56 (2000): 1497–1508.

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__________________________________________________________________ Jason, Leonard A., Patricia A. Fennell, Renee R. Taylor, eds. Handbook of Chronic Fatigue Syndrome and Fatiguing Illnesses. New York: John Wiley and Sons Inc., 2003. World Health Organization, and World Bank Group. World Report on Disability 2011. Geneva: World Health Organization, 2011. Accessed July 17, 2011. http://www.who.int/disabilities /world_report/2011/report/en/. Patricia A. Fennell is a researcher, clinician, musician and author specializing in chronic illness, trauma, forensics, hospice, and global health care concerns. As the author of validated Fennell Four Phase Treatment model, President and CEO of Albany Health Management Associates, she lectures to, advises, and consults with government, professional, medical, academic, management, and patient organisations in North America, Europe, and Africa. John Esposito, an active jazz pianist and composer for 40 years, the founder and executive producer, has been a professor of music since 2000 at Bard College in New York, where he teaches theory, history, composition, piano, drums, and performance ensembles. Ann Fantauzzi has taught upper elementary grades, as well as administered and taught the gifted and talented program in her district as a professional educator for 34 years. For the past three years, she has trained student teachers in Namibia

Does Social Support and Self-Esteem Determine Depression in Chronically Ill Patients? Zaeema Riaz, Riaz Ahmad and Sarwat Jahan Khanam Abstract The objective of the present study was to determine the association of social support and self-esteem with depression and to explore the role of self-esteem as an important factor between social support and depression in chronically ill patients (HIV, AIDS, & Hepatitis C). Based on detailed literature review the following hypotheses were formulated: (1) there would be a negative correlation between social support and depression among chronically ill patients; (2) there would be a negative correlation between self-esteem and depression among chronically ill patients; and (3) self-esteem would add to the relationship between social support and depression of chronically ill patients. The sample consisted of 100 drug addicts diagnosed with HIV, AIDS, or Hepatitis C patients from different hospital settings and clinics of Karachi, Pakistan. The participants were requested to fill out the demographic form and were also briefly interviewed about their illness, type and duration of illness, and treatment. Social Provisions Scale, 1 Rosenberg Self-Esteem Scale 2 and Siddiqui-Shah Depression Scale 3 were administered to measure perceived social support, level of self-esteem, and depression of participants respectively. Descriptive Statistics were computed to analyse sample characteristics. Hierarchical Regression analysis was applied in order to explore the relationship of social support and self-esteem with depression. The analysis reflects self-esteem and social support as significant predictors of depression. Key Words: Social support, self-esteem, depression, chronic illness. ***** 1. Introduction Human health revolves around all aspects of life as evident from the definition of ‘health’ presented by The World Health Organization, ‘a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity.’ 4 Having chronic physical disease is an overpowering event which seriously undermines the human’s capability to ensure their livelihood, and it damages social development and mental well-being. The prevalence rate of chronic diseases is increasing rapidly in Asia. Evidence shows that 75 per cent of carriers of hepatitis B virus reside in South East Asia and in the Western pacific. 5 Similarly, approximately 4.87 million people affected with HIV are living in southeast Asia. 6

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__________________________________________________________________ People living with chronic illnesses like HIV/AIDS and Hepatitis C continue to face several medical and social challenges like stigma and discrimination, physical problems and disabilities, and ultimately death. With the growing prevalence of HIV, researchers are taking interest and are concerned about the psychological adjustment and the comorbidity of psychological problems like depression in this population. Depression is relatively common in association with medical illnesses and may exceed that of the general population in those with active medical problems. 7 Most of the symptoms of HIV, like decreased sleep and appetite, fatigue, weight loss and somatic complaints, are similar to depression and may increase the chances of depression in HIV positive individuals and elevate the susceptibility of many depression rating scales. 8 Studies have found a high prevalence of depressive symptoms in patients diagnosed with HIV/AIDS and substance use disorders. 9 Fact sheets in Pakistan also show that most of the patients affected with hepatitis experience anxiety and depression. 10 Yoon 11 conducted a cross-sectional observational study to examine level of depression in patients diagnosed with hepatitis C and HIV. These study findings showed worse severity of depression in these patients. Co-morbidity of psychological disorders with such chronic physical disease affects the individuals’ ability of active participation in the process of treatment and recovery and also hinders engaging in health promoting behaviours. Feeling of hopelessness and perception of lack of control in chronic diseases like AIDS is associated with the onset and course of depression in HIV-infected individuals. 12 Taking into account the effect of depressive disorder specifically it is manifested that the presence of depressive disorders often adversely affects functioning and well-being, compliance with treatment, course of illness, and hence treatment outcome. 13 Meta-analytic techniques by Ciesla et al., 14 demonstrated that HIV infection is highly linked with a greater possibility for major depressive disorder. The occurrence of major depressive disorder was nearly two times higher in HIV-positive individuals than in HIV-negative individuals. Although the prevalence rate and symptoms of depression are high in HIV/AIDS infected population, the causes of these symptoms are yet unclear. Social, psychological, and biological factors have all been suggested as potential basis. 15 Many studies have investigated the relationship between depression and social support together with self-esteem. In most of the recent researches, compared to other health indicators, social support, family, friends and social involvement is considered to have a stronger influence on the quality of life. Moreover, intimate relationships are a significant factor when assessing quality of life in chronically ill individuals. 16 The way through which social support exercises its useful effects are not clear, but its role in getting compliance, improved access to health care, better psychosocial and nutritional status and immune function, and reduction in the levels of stress are very useful. 17 Previous studies have found a significant association of social support with psychological and physical concerns

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__________________________________________________________________ for HIV-infected individuals. 18 There is bulk of evidence that shows social support is an important contributor in the course and outcome of depression. 19 Chronic physical conditions directly or indirectly cause depression as they can affect domestic relationships, reduce occupational performance, impose economic strains, and also can undermine personal resources, particularly self-esteem. 20 Diagnosis of any chronic physical disease is a highly threatening and stressful event and it can further be aggravated by social or relationship problems, and a poor level of perceived health. 21 Conversely, greater satisfaction with the availability of social support was associated with lower levels of mood disturbances and uncooperative interaction was positively related to the use of the coping strategy of disengagement or denial. 22 Another study indicated that patients with chronic disease had higher level of depression and lower self-esteem than their healthy agematched controls. 23 Self-esteem is another factor like social support, exerting a useful function on the well-being of humans. Self-esteem is referred to as a personal and internal resource like resiliency that is used during stressful situations, 24 and is associated with health and well-being in a number of samples and domains. 25 Self-esteem is influential for social experiences and depressive symptoms. Living with chronic diseases for a long period, a person might become uncertain, hopeless, and decrease self-confidence; moreover, stigma associated with illness can worsen the condition. In this distressing situation self-esteem is considered an important psychological resource that helps to sustain efforts to cope with stress. The association between social support, self-esteem and depressive symptoms in the perspective of different chronic diseases and their effects on each other has been extensively researched. It is believed that social and psychological resources supplement each other, for example, high self-esteem people are expected to find or perceive more social support. On the other hand, social support may support a person’s self-esteem and may be mainly important in decreasing depressive symptomatology during a stressful situation. 26 Self-esteem functions both as a determinant as well as an outcome linked to diverse health behaviours and social experiences. Self-esteem is not only seen as associated with social support but also determines the positive relationship which has numerous favourable impacts on physical and mental health. There is increasing evidence that self-esteem along social support helps to reduce the deleterious effect of stress and affects psychological well-being. 27 Symister and Friend 28 while examining the relationship of social and problematic support with psychological adjustment in individuals with chronic illness, found that social support operated through self-esteem, which in turn increased optimism and was associated with decreased depression. In a comparative analysis of patients with arthritis and a healthy group it was found that self-esteem mediated the relationship between negative marital interactions and depressive symptoms in patients affected with arthritis, whereas, self-esteem

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__________________________________________________________________ played no significant role in mediating the relationship between marital interactions and depressive symptoms in the healthy group. 29 Pearlin, Menaghan, Lieberman, and Mullan 30 hypothesised that self-esteem and mastery, or personal control, mediates the effects of social support in individuals experiencing stress, or in populations with uniformly high levels of stress, for example individuals with a chronic illness. This theory proposes that social support increases the levels of individual or psychological resources, which then in turn reduces psychological distress. The present study was designed to explore the relationship of self-esteem and social support with depression in chronically ill patients. Previous findings suggest the mediating role of self-esteem in the response of physical illness; therefore the present study expands to examine the role of self-esteem in the relationship between social support and depression in chronically ill patients. 2. Participants For the purpose of present study, a sample of 100 drug addicted patients diagnosed as having HIV, AIDS, or Hepatitis C were selected from different Rehabilitation centres and hospital settings of Karachi, Pakistan. The age of all the participants ranged from 18 to 50 years, belonging to lower socioeconomic class. 3. Procedure After getting informed consent, clinical interviews were conducted to know about the participants’ illness, type and duration of illness, and treatment. Drug addicted patients were then diagnosed and classified as either having HIV, AIDS, or Hepatitis C. Later on, The Social Provisions Scale Urdu Version, 31 Rosenberg Self-Esteem Scale Urdu Version, 32 and Siddiqui-Shah Depression Scale 33 were administered to measure perceived social support, level of self-esteem and depression of participants respectively. Descriptive Statistics were computed to analyse sample characteristics. Hierarchical Regression analysis was applied in order to explore the relationship of social support and self-esteem with depression. 4. Result Table 1- Model Summary of Hierarchical Regression Analysis with Social Support and Self Esteem as Predictors of Depression Predictors Step I

R

R²

Adj R²

Change Statistic R² C F

F

df

C Sig F c 11.40*

1, 98

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.323

.104 .095

.104

11 .40

.001

.431

.186 .169

.082

9.71

.002

Step II Social Support and Self Esteem

11.06*

2, 97

* p< .001 Table 2 - Model Coefficients for Hierarchical Regression Analysis Coefficients Step I Constant Social Support Step II Constant Social Support Self Esteem

Un standardised Coefficients B SE

Standardised Coefficients Beta

t

p

132.246 -1.006

17.778 .298

-.323

7.439 -3.377

.000 .001

146.500 -.852 -1.579

17.639 .290 .506

-.274 -.290

8.306 -2.942 -3.117

.000 .004 .002

5. Discussion Hierarchical regression analysis reflects self-esteem and social support as significant predictors of depression. When the model includes only social support as a predictor it explains 10 per cent variation [R² = .104, F (1, 98) = 11.40, p