Between Sickness and Health

The Landscape of Illness and Wellness

Christopher D. Ward

• Publisher: Routledge
• Year: 2019
• Print ISBN: 9781138592865
• eBook ISBN: 9780429952845
• Edition: 1
• Topic: Medicina
• Subtopic: Prestazione di assistenza sanitaria

Between Sickness and Health is about illness rather than disease, and recovery rather than cure. The book argues that illness is an experience, represented by the feeling that 'I am not myself'. From the book's phenomenological point of view, feelings of illness cannot be 'unreal' or 'fake', whatever their biological basis, nor need they be categorised as 'physical', 'psychosomatic' or 'psychiatric'.

The book challenges the disease-centred ethos of medicine and medical education. It demonstrates that a clearer conception of illness, as distinct from disease, is therapeutic. The feeling that 'I am once again myself' can return, in some degree, whatever state the body is in. Resilience becomes more available when it is seen as a set of personal skills that can be developed, rather than as an inborn trait. Possibilities of wellness are enhanced by recognising that medical and other therapies can either support or impede recovery, as can human relationships and the socio-political environment.

The book's many clinical examples are drawn from the author's broad experience as a neurologist, rehabilitation physician and systemic family therapist. Between Sickness and Health will be useful for students, practitioners and academics, and also for anyone who has been or might one day be ill.

PART I

Illness

1

INTRODUCTION

Between Sickness and Health invites you to rethink illness. I write as a doctor and family therapist, but this book will not be a technical description of disease mechanisms or therapeutic remedies. I want to use what I know, along with whatever evidence can be found, to create a description of what it is to feel ill, and what it means to recover. I will be aspiring to see illness from a sufferer’s rather than an observer’s point of view. Such a picture becomes necessary when the concepts of illness and disease diverge, as they often do.

Illness is almost as unavoidable as being born, giving birth, growing, ageing and dying. A book about illness is therefore likely to touch on most aspects of what matters in human life. If this sounds excessively grand, think what happens when you are unwell. Anything from a humble cold to a mortal illness is liable to make you see your self and your life differently. You will also be seen differently by others; it is hard to be a serious person if you have a runny nose. When illness takes the lid off normality it exposes hopes and fears and social constraints – and even, occasionally, possibilities of liberation – that are invisible most of the time.

Writing the book has brought home to me that illness is not so much an aberration from normal life as an integral aspect of it. Illness creates culture. People who write or talk about their experiences of cancer, for example, are influencing contemporary attitudes towards life and death. Doctors such as myself are participants in the interpretation of the world, along with our patients. I should emphasise here that I am writing from within the ‘Anglosphere’, but the same dynamic relationship between illness and culture probably exists wherever people feel ill.

At one level, illness hardly seems to be a problem: isn’t it just something to be endured where necessary and avoided if possible? And yet, the way we understand illness and its miseries makes a real difference to our lives. Ideas and feelings about illness directly affect the symptoms we experience and also shape the attitudes of the well towards the ill. Patients and doctors sometimes disagree about what should be counted as illness, and so do family members, friends, benefits assessors, therapists, teachers and others.¹ This book will ‘erect signposts at all the junctions where there are wrong turnings so as to help people past the danger points’.² One wrong turning is to label someone’s distress as medical without acknowledging its personal and social context. The danger here is of misconstruing the problem and hence seeking harmful or inadequate solutions. Explaining low mood in medical terms, for example, can sometimes be harmfully misleading, and so can treating obesity as an illness. An opposite wrong turning is to insist that someone who feels unwell is not really ill. The sufferings of people with psychiatric diagnoses are often dismissed as though they were not genuine illnesses, and those with contested conditions such as chronic fatigue syndrome or ‘myalgic encephalomyelitis’ (CFS/ME) often have the same experience.³ Both these wrong turnings arise when illness is confused with disease. To be ill is to feel unwell, and I will be developing a concept of ill-being that encompasses all authentic feelings of illness, regardless of their biological or psychological basis.

Since illness is a feeling, what can be said, and who can say it? Social scientists write from a theoretical point of view about key themes such as culture, power and identity. Those with personal experience, on the other hand, write about what illness means in subjective terms. Clinicians such as myself are often positioned as objective observers, but at times our relationship with illness is highly personal so that we can form a useful bridge between experience and theory. I begin this introduction by explaining how my experiences as a doctor and family therapist have led to this book. I then outline the key themes and theoretical orientations, giving a selective overview of each chapter’s themes.

I

When I was a medical student the primary object of study was not illness but disease.⁴ I was taught to use clinical information mainly as a guide to diagnosis and at the bedside I was on the lookout for the patterns that diseases produce. A cough, a fever and a crackle in the lung suggested pneumonia, for example. We knew that breathlessness might be due to pneumonia, but if the ankles were swollen perhaps there was a problem with the heart. At that early stage I was too busy trying to make sense of what I could hear or see or smell to spare much thought for my patient’s inner lives. Illness was a word for what you could see, not for what a person felt. Was the patient ill, or not? If so, how ill? This was an important question on an acute admission ward, where some patients needed urgent action while others could be left until later, or even dismissed. A patient who was ‘genuinely ill’, as we would put it, was someone with a definable disease. I had neither the time nor the incentive to discover what the symptoms of diseases felt like.

My years of specialist training in neurology were defined to a large extent by a distinction we were taught to make between real and unreal illness. When you are anxious it is easy to imagine you have multiple sclerosis (MS), because its sensory symptoms are very similar to the pins and needles and itches of normal life. Our patients often asked (as did the doctors who referred them) whether they were ‘really ill’. What neurologists meant by the word anxiety was that the patient was not unwell. If you were anxious there was ‘nothing wrong’.

Many people are immensely relieved to hear this, but it is hard to accept that you do not have an illness when you are convinced that you do. The most frustrating patients, for us, were the ones who claimed to be ill without any evidence of an ‘organic’ problem. Organic meant that an organ such as the brain or the heart was diseased. Complaints without an organic basis were (and often still are) called functional illness.⁵ In their most extreme forms, they were diagnosed as hysterical conversion. This was a nod to Freud, who claimed that emotional disturbances could be converted into bodily forms, but the unvoiced assumption was that if an illness had an emotional basis it was not real.⁶ On more than one occasion I heard David Marsden, the premier professor of neurology in our day, and a brilliant neuroscientist, refer to a person’s functional symptoms as ‘fake’. I was not happy with the supposed distinction between real and unreal illness, and my discomfort increased when I began meeting people diagnosed with CFS/ME. Symptoms such as fatigue, diffuse pain and lack of mental concentration produced real suffering, as anyone who lives or works with individuals will know, but the ‘realness’ of their symptoms cannot be confirmed objectively.

The nature of illness experience becomes hard to appreciate when it is defined by the image of disease as something visible and physical. This is just as true of organic as of functional conditions. During my specialist training I met people with Parkinson’s disease who insisted that they were not ill but had every appearance of being so, particularly when responses to medication were erratic or inadequate. Their neurological impairments never went away, alas, and yet feelings of illness seemed to come and go. I began to realise that a doctor can no more determine whether a person is feeling ill than whether someone is or is not in pain.

Another crucial distinction I came across during my training was between illness and disability. Neurologists had even less interest in disability than in illness. Disability was something we trainees felt we should leave to occupational therapists and physiotherapists (which was another aspect of the way we were learning to keep our distance from our patients’ personal experiences). I could not help getting interested in people’s back-stories, however, once I began to ‘follow’ them in successive outpatient appointments as their neurological conditions progressed. They were continually bringing me questions about their practical lives. I was endlessly surprised by the effects of a condition such as Parkinson’s disease on mobility, sleeping, thinking, sex and in fact every aspect of life. My patients were drawing me towards what I would now call their illness narratives. Patients’ stories constantly suggested meanings that lay outside the narrow confines of a clinical history. Late in my medical career I discovered the value of exploring meanings through narratives without compromising the scientific approach to medicine, which I valued then, as I do now.

Narratives create a flow between different conceptions of illness. It suits the purposes of medicine to define illness in a certain way, but the experience of feeling ill is not well captured in biological language. Once free of its biomedical mould, however, illness becomes an ambiguous concept, threatening to fall apart entirely when we try to define it precisely. What exactly is the difference between disease and illness? What kinds of illness are real, and which are trivial? What do physical and mental illnesses have in common? Can illness have meanings? I quickly recognised as a doctor that addressing these questions requires a broader theoretical perspective than medicine can offer.

Anglo-American medical culture, in my experience, has a low opinion of theory. I remember a neurologist colleague beginning a lecture with a few tantalising remarks about the psychological causation of symptoms before cheerfully dismissing theory with a phrase I have often heard: ‘Enough of philosophy!’. Doctors are so preoccupied with disease, as patients are with their sufferings, that theorising feels like a luxury. Theory is not a dull irrelevance to me, but a stimulus to the imagination. How else are we to be liberated from our prejudices? While I was a research registrar one of my patients presented me with a copy of Irving Goffman’s sociological study of stigma.⁷ He was inviting me to break through a barrier that divides practice from theory. This book extends the same invitation to clinicians and non-clinicians alike.

II

The theories needed in this book are not those of biology but of human life, as lived through personal narratives, because its purpose is to explore the meanings and implications of illness rather than the mechanics of disease. The book’s clinical stories will mostly be connected with real people, but I want to begin by inventing one. Imagine two scenes in the life of a woman we’ll call Zola. In Scene 1, Zola wakens in the middle of the night feeling ‘off’. Being only half awake, she does not yet know what her offness is due to. It could be ‘trouble, sorrow, need, sickn...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Table of Content
• List of illustrations
• Acknowledgements
• Preface
• A note to patients, clients and families
• PART I: Illness
• 1. Introduction
• 2. Images
• 3. Knowledges
• 4. Feelings
• 5. Appearances
• 6. Meanings
• PART II: Recovery
• 7. Possibilities
• 8. Obstructions
• 9. Resources
• 10. Abilities
• 11. A Doctor’s Note
• Appendix 1
• Bibliography
• Index