Chapter 32 Beyond the restitution narrative
lived bodies and expert patients
Organic life is vulnerable; it inevitably ends in disintegration. This is part of its beauty.
(Tollifson 1997, p. 6)
In this book on clinical reasoning this chapter speaks of reasoning that goes beyond the practitioner’s frame of reference and beyond the dominant medical paradigm. Our aim in this chapter is to explore what it means to be living beyond the restitution narrative (Frank 1995) in which the restoration of health, cure and medical science construct practitioners’ behaviour and restrict the role of patients. In doing so we focus on practitioner–patient interactions. Our underlying belief is that even while people are chronically ill they can live a life worth living, and this is made easier when they are allowed to rise above ‘patient’ status, are seen as their own best experts about their bodies, and are treated with dignity and respect regardless of their ‘failure’ to get better. Essentially, what we want for patients living beyond the restitution narrative is the right to create a new ‘normal’ for themselves, even while medically speaking they can never be normal again. This is important because society looks to medicine to define ‘normal’ and ‘abnormal’, and therefore reinforces the right of a person to participate in life as a normal person or not. In keeping with the group whose experiences speak in this chapter, we refer to patients as female.
Our exploration is grounded in the research discussions of the Phoenix Rising group from the Blue Mountains Women’s Health Centre, Katoomba, New South Wales, Australia. This group comprises 15 women living with chronic conditions and disabilities who have been meeting weekly for 2 years. They live with a wide range of chronic conditions, among them Parkinson’s disease, cancer, stroke, multiple sclerosis, Huntington’s disease, chronic fatigue syndrome, depression and chronic pain. None are curable, but all are determined to live as normal a life as possible. The meetings are facilitated by Suzanne. All vignettes in this chapter are either individual stories the women have told or composite stories that illustrate a theme. They have agreed to their stories being told in this chapter in this way. Paradoxically, what they are asking for from people working in the health professions seems surprisingly simple to give. What follows is what these women want us to tell you.
Living with chronic illness is a long, arduous journey. The constant compromise and coping with developing disability is an ever-increasing challenge. The frustration of dealing with reducing activity, loss of previously held freedoms and the changing/shrinking world around me means dealing with an unknown situation, on a regular basis. The effort that has to go into finding information is an exhausting process and occurs at a time of low energy. The emotional impact of receiving a sympathetic and supportive response could play a strong part in the process of healing. Helplessness, the overwhelming loss and feelings of lack of control can be overcome somewhat when practitioners recognize that the way they respond to the panic, stress and trauma associated with life-challenging diagnoses have such a tremendous impact on survival. (Phoenix Rising participant)
Some people who are diagnosed with a chronic illness or disability do not get better, are not cured and never return to ‘normal’. People working across the whole spectrum of the health professions both know and avoid acknowledging and dealing with this reality. The dominant narrative, or belief, is that once diagnosed you will be treated, and then you will be cured. All energies, all treatments and all interventions are geared to the goal that it is possible to get better. This is the promise of science and medicine. Yet science and medicine do not completely understand how to prevent or cure a wide range of conditions that become chronic. There may be much that medicine can do to relieve symptoms and improve the prognosis, but the brute fact of chronicity and permanent illness identity remains. For these people, the restitution narrative has failed. They will not necessarily be ‘restored’ to heath.
When someone develops a chronic illness they need to work out an identity, a self narrative, that will enable them to continue living while under the constant physical, mental and emotional assaults of life-changing challenges that make it difficult to feel like themselves anymore. We include disability with chronic illness under the term ‘chronic condition’, by which we refer to any disease or impairment of body or mind that is not yet curable by any branch of medicine. This includes congenital forms of disability. We are aware that many people who see themselves as disabled resist being thought of as ill, even chronically ill. Our working definition of a chronic condition is that it is defined by medicine as an abnormal condition, and even if it cannot be cured medicine holds authority over it. Whether the patient resists the classification of disability as an illness, medicine still regards it as deviation from normal, and social attitudes to abnormal conditions follow the lead of medicine. This leads to the challenging issue of where patient narratives fit in the clinical decision-making process. On the one hand we challenge practitioners to listen well to the narratives and expert knowledge of people with chronic illnesses. On the other hand, perhaps we should replace the terms clinical (pertaining to biomedical pathology) and decision making (commonly implying a dominant role for, and expertise of, the practitioner) with lifestyle negotiation, where partners with different areas of expertise and potential contributions negotiate on ways of supporting the client’s optimal lifestyle. In this way practitioners are recognizing and honouring the fact that, although stranded in illness as far as their medical status is concerned, people who live with a chronic condition try to create a way of life that makes them feel normal, autonomous and efficacious. The first step in this process is gaining an understanding of what it means to live, indeed flourish, beyond the restitution narrative. So how do people with chronic conditions try to create a new ‘normal’ for themselves? What are the supports and barriers in this re-narrativization process?
A stroke patient is pleased at first that she has survived and appears to be getting better. As the medical efforts subside, however, she begins to see how stuck on her path she really is. She cannot imagine ever feeling normal again. There does not appear to be anything or anybody capable of restoring her to ‘normality’ if she cannot achieve complete cure. There are no maps except medical ones. The attitudes around her reflect her lost value to the community, her helplessness and the paucity of options available. Being cared for seems to be the best she can hope for.
A person living with an incurable illness is firmly located as abnormal, ill and disabled. As this person turned patient begins to negotiate the spatial layers of discourse, attitudes and assumptions concerning being ill and disabled, she encounters a sticky web of professional, social and cultural attitudes and practices that have been constructed based on the dualisms of health/illness, and the value that health is better than illness. Everything that now happens in the life of the patient is coloured by that dualism and those values. These values are deeply seated and reflect Western society’s fears about decay and death (Garland-Thomson 1997).
Gender theorists suggest that we act out what it is to be male or female according to pre-written cultural scripts that tell us what to do, how to be, and that allow other people to read us and be able to tell who we are (Butler 1993, Connell 2002, Kimmel 2000). There are well-trodden paths that tell patients and doctors and the rest of the community how to think about being ill, what to do, and how to behave towards illness. The mapping of those cultural ways is laid down in layers of meanings. There are many culturally approved layers that tell us what is ‘really’ happening to bodies and to the people who live in and around them. There are discursive layers where the rhetoric about health and illness is spun. There are political and economic layers which lay down the rules for how people may participate in community when they are ill. There are social layers that tell us how to behave with illness and around illness. These layers are the taken-for-granted assumptions we hold about health and illness in our society. Because they are taken for granted, seen as normal, they are mostly invisible. This invisibility makes it seemingly impossible to negotiate ways around and through them.
Expertise is supposed to rest with the professional entirely and not at all with the patient. The sheer weight of history that professionals have had with other patients works against an individually-referenced perception being made. The system is unwieldy and inflexible. There is an appalling lack of imagination among health scientists and professionals that sometimes makes it hard for them to see outside the label box.
Medicine examines and treats bodies and minds (Fosket 2000; Foucault 1982; Illich 1977; Porter 1993, 1999). The status of these bodies and minds is determined by a series of tests which subject the body–mind to minute and objective surveillance (Foucault 1973). Classification by way of diagnosis follows. Ideally, diagnosis leads to treatment options and some idea of prognosis. This whole performance is theoretically independent of the subjective world of the patient. The patient is expected to render herself a passive recipient of professional care, acting only when asked to carry out medical instructions. Refusing to inhabit this passive role has its consequences:
Having preferred to use alternative therapies all her life, a woman living with Huntington’s disease alienates her medical carers when she refuses some medications on the basis that they will interfere with her preferred values. Consequently, she feels disapproved of and unable to return to their care.
Each instance of disease occurs in the lived body of a unique individual. Medicine often proceeds on the principle that all instances of disease are essentially the same. The lived body encompasses the idea that the body–mind under the medical gaze is not free of values, is not interchangeable with any other body–mind, and cannot be properly read without the original inhabitant and her life world. Whatever is going on in the body is influenced and affected by the subjectivity of the person who lives in it, and has to be incorporated into a particular life. It follows that any health care will be more or less successful depending on whether it takes the subjectivity of a lived body into account. The lived body is the sum of all the physical and mental signs and symptoms normally regarded as the proper focus for health care, plus the experiences of living those signs and symptoms in the day-to-day world. The lived body then encompasses the whole spectrum of bodily and mental experience and the subjective values that guide the life lived with/in that body. The lived body brings all its experiences into the surgery and refuses to be treated without these being part of the decision-making equation.
After her stroke she was told by her doctors that there was little point in hoping for improvement beyond the 6 month mark. She was left to her own devices. She wanted to die because there was no hope. She never thought that her doctors might be wrong. When she found out that it was not true, that she could still work for improvement, she got her old sense of life back. ‘It seems that it does not matter to my doctors that I have a life, just that I stay alive.’
Here is the difference between feeling like a body and feeling like a lived body. If all a professional is interested in is the drama of the fight to keep someone alive, regardless of how that saved life is lived out, the patient may be stranded in the black hole of recovery without direction or hope. For practitioners, then, a serious shock and awakening is necessary. Have you caused or contributed to this black hole? Is your motivation the existence of life or the support of living?
If you do not know how to cure the disease
I have to go on living with forever
The lived body produces an expert patient. The expert patient accumulates an impressive research history as she works through the issues of her illness and begins to know what works for her and what does not. Along this journey to expertise there are many stages and many levels of self-empowerment and self-awareness. For those coming to terms with their new living reality, understanding and demands for acknowledgement are emergent rather than readily and ever-present. By comparison, the expert patient brings her lived body into every medical encounter and insists on its recognition in that environment. This insistence often meets resistance from professionals:
Living with an atypical form of Parkinson’s disease, a woman who lives alone needs medical reassurance when her breathing is threatened. She encounters different staff all the time at Accident and Emergency, all of whom insist on reading her body by the usual methods and not listening to her. She carries a letter from her GP to reinforce what she is trying to tell them about what works and what doesn’t, but she is labelled hysterical and neurotic and the letter is often not referred to at all. The knowledge of the body possessed by the staff is supposed to be all that is required. She has refused certain medications because they have been poorly tolerated in the past. She is sidelined as a difficult patient.
The expert patient is not a bully. She lives in this ill or disabled body and she is trying to make a life with it. She knows that her disease is incurable. She wants the help of medicine insofar as it is able to help at all, and she wants to benefit from future developments. But for the time being, she is trying to live out a life that feels as normal and satisfying as possible. She is trying to bridge the narrative gap between the old life that she could live before illness or disability disrupted narrative flow and a new life that reflects as much of what is important to her as possible. So she brings her lived body into every decision-making arena because she needs her treatments to be consonant with her own needs and values. She knows things about living a particular life with this illness or disability that the professional cannot know. Both bring expertise to the encounter. The professional brings knowledge about the disease or impairment she is living with. However, professional expertise is culturally privileged over personal or subjective feelings and preference. This means that the expertise of a patient is rarely heard.
It can be difficult, perhaps impossible, for a patient who wants to share her expertise to do so when the power differential is very much tipped to the advantage of the professional (Bogoch 1994), when there is not much time for consultations, and when practitioners have been taught that the only important things to know about illness come from their own discipline and body of knowledge, and not from a patient (Atkinson 1997, Beckett & Wrighton 2000). A patient may feel fearful about being labelled a troublemaker or a difficult patient, so she may not insist on being heard. Assertiveness goes out the window in favour of maintaining the approval and cooperation of the practitioner. However, if her expertise can never be a part of decision making, then she may find her life hampered as much by health professionals as by the burden of disease alone.
With/in the medical narrative, authority on the lived body of the chronically ill person is positioned with the practitioner, not with the patient. This authority enables the practitioner to tell the ‘truth’ about the patient’s body. The authority is exercised through the use of a highly technical and specialized language that is valued over the subjective discourse of patients. Practitioners tell the truth, and patients tell ‘stories’. The practitioner’s truths are seen as the only useful knowledge about a person’s condition and body.
She was an avid campaigner for valued causes but is no longer able to participate physically as she would like to. When she tries to explain her purposes to her specialist so that they can be made a part of decision making, he seems to feel uncomfortable and ignores the subjective side of her illness entirely. It is as if her story does not count. This means she feels invisible, and as if the only identity she can have is through her dysfunctional body.
However, practitioner truth about what is wrong with the patient is just a clinical story; perhaps no more true than any story the patient may be trying to tell. The clinical story bisects the life of the patient, and she needs time and a willing audience to help imagine a way to pick up the pieces and go on to make a new life. The clinical adventure, which so thrills many practitioners, can leave the patient abandoned in the black hole of narrative ruin.
Can we truly afford to listen to the patient’s version of what is going on? Taylor & Brown (1988, 1989) made a case for the positive effects on the lived experience of illness of patients being able to develop and live out their illusions and representations, even if these are not medically ‘factual’, and Wiginton (1999) reported similar findings in a study of lupus patients. Illness representations appear to be important to outcome, and yet they are either entirely unacknowledged in the medical encounter or rejected as nonsense because they conflict with the medical story.
Foucault (1982) considered that where there is oppressive power there is always resistance. The power of the clinical expert’s knowledge stories is resisted by expert patients who have a different story. But resisting the authority of the so-called truth tellers, because it does not accord with what the expert patient knows about her preferred lifestyle or choices, is fraught with difficulty.
One woman was subjected to guardianship proceedings, and could have been scheduled, because she resisted the advice of specialists. Although she prevailed that time, she knows that she no longer has the sympathy of those practitioners. This worries her because she will probably need them as the disease progresses. All she wanted was to be able to choose treatments that reflected her own values for as long as possible.
Time and energy become fiercely guarded commodities when a person is chronically ill, yet medicine plunders both for its own ends. Many of the women in this chapter spend so much time waiting in waiting rooms, going for testing, and struggling to meet the endless expectations of government agencies to prove that they are ill, in need of some support, that they feel their illness is a full-time job. There is no time or energy for anything more meaningful when they eventually get home. They collapse, and feel even more hopeless about their ability ever to be able to live a participatory and contributing life. The time of a health practitioner always seems to be considered more important than the time of the patient. If a patient gets im-patient, and leaves the surgery, she can be punished by disapproval and difficulty in making another appointment. If she is sent for more blood tests, or to see a specialist, on a day that clashes with her patchwork class, the decision to go to the class instead of the medical appointment is seldom sympathized with. When you are living with a permanent illness, the things that mark out your life that are not medical are vital to well-being. Patients need to be able to choose other or different commitments over medical ones and not risk losing medical support. Sometimes choices are about different sorts of treatment:
A woman with metastatic cancer refused a second bout of chemotherapy in favour of Chinese herbal treatments. She does not know if these will ‘work’ for cure or not. But the practitioner who prescribes them makes her feel as though anything is possible. ‘He chooses to reject my cancer as a clinical entity and instead sees it as a pilgrimage that is tied up intimately with my own soul journey’. The way he explains health and illness captures the ecology of her whole life. That offers her more hope and sense of purpose. She knows that she can work for good things to happen in her life that have nothing to do with cure. Her oncologist speaks to her only about cells and cellular processes.
Medicine deals with the observable processes and dynamics of the clockwork body–mind (Broomfield 1997; Porter 1993, 1999; Wertheim 1997). Treatment aims to change the condition of the body–mind, much as a clockmaker fixes a clock by understanding exactly how every cog fits and works together. When that cannot happen because of insufficient knowledge or skill, many patients feel hopeless and bereft of direction for further action. If they can find a way to think about the illness that transcends the brute facts of the disease they often feel more positive and empowered. This is healing, not cure. Some would call this attitude being ‘in denial’, because the brute facts of the disease appear to be sidelined. The women in this chapter feel it is the opposite of denial.
Broyard (1992, p. 41) spoke of the need for practitioners to be able to see past their love affair with technology: ‘The technicians bring in the raw material. The doctor puts them into a poem of diagnosis’. Refusing to be reduced to a mechanical body is an act of resistance and hope. It is not easy. Every time a diagnosis is made patients tend to take on that diagnosis as an identity. This can prevent practitioners and others from seeing the patient as a full human being, let alone an expert. It can prevent participation in community and work situations because the incompetence and dysfunction that goes with a disease or disability can generalize outwards to encompass the whole space the patient occupies.
The label ‘Parkinson’s disease’ had reached someone on an interviewing panel when a woman applied for a job which she knew she would be able to do for some time. She was not given the job. This was read by some as a good thing, because she clearly had to be protected from doing too much. There was an implicit judgment of incompetence to know what was best for her that went along with the potential dysfunctions that would come with her disease.
Labels can follow patients around for the rest of their lives in the form of case notes. Even after recovery is achieved, it is hard to see past the ‘truths’ written into the medical case notes.
Misdiagnosed schizophrenic several years ago, this woman is now considered to have been suffering from a severe depression. After years of treatment she has recovered her confidence and ability enough to think about re-entering the world of work. Although her mental health workers individually agree with her, she cannot get her old identity back officially because of the label ‘schizophrenic’ recorded in her case notes. The official attitude is that the notes must be right, and her good performance now is just a temporary thing, she will probably relapse. The default setting is suspicion, not affirmation and celebration at recovery.
There seems to be little room for recognition of who the patient was before becoming ill, as well as who she is becoming now. Most of the women in our group enjoyed active and contributing lives and gained a large part of their sense of self from their work, paid and unpaid. Their practitioners rarely want to know who they used to be. The medical gaze is focused on the body–mind and its ‘truths’.
Chronically ill patients have to live their disease for the rest of their lives. The medical system often fails people like me by constantly re-engaging with the stubborn face of my disease and failing to engage with the lived body behind it. In your well-meaning campaign to re-seek success in terms of cure you shuffle me in and out of tests and treatments, expect me to comply and reject me if I don’t pursue the goals of the clinicians, even when the probability of success is very low. Everyone is afraid when the restitution narrative fails.
When you find you have strayed off the medical map and are floundering in the wasteland beyond the restitution narrative, remember that you have a guide with you. You have an expert patient who will show you what she needs and how you can best support her.
Encourage me to reclaim my experience with vulnerability as normal. It is normal to be vulnerable, after all, and not the other way around. In our love affair with medicine we may have forgotten that.
Sit with me. Listen to me as I tell you what’s important for me to be able to re-engage with life. Reassure me of your support whenever I need it, whatever my decisions. Be honest with me about your distress and sense of helplessness, and let me know you will continue to be available as a resource to me. Be comforted by what can happen beyond the restitution narrative when I am allowed to rise above patient status and make decisions about my quality of life and the way it is storied. ‘What do I want in a doctor? I would say that I want one who is a close reader of illness and a good critic of medicine’ (Broyard 1992, p. 39).
In this chapter we have tried to make visible and clear the spaces that people living with chronic conditions both inhabit and learn to negotiate as they struggle to live a life beyond cure. Making negotiations and decision practices that are guided by expert patients and the needs of lived bodies can enable people to resist being captured by the inherent confusion and contradictions of lived illness and disability, particularly when chronic. The oppressive forces that keep patients with chronic conditions firmly pinned in their role as permanent passive patient stimulate resistance in patient groups like Phoenix Rising. That resistance must be nurtured to flow out into all the spaces inhabited by patients and within which they struggle to find a new ‘normal’ for themselves.
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