The Illness Narratives

Preface

During the early 1960s, in my second and third years at medical school, I encountered several patients whose powerful experiences of illness, at either pole of the course of life, fixed my interest on the intimate and manifold ways by which illness comes to affect our lives.

The first patient was a pathetic seven-year-old girl who had been badly burned over most of her body. She had to undergo a daily ordeal of a whirlpool bath during which the burnt flesh was tweezered away from her raw, open wounds. This experience was horribly painful to her. She screamed and moaned and begged the medical team, whose efforts she stubbornly fought off, not to hurt her anymore. My job as a neophyte clinical student was to hold her uninjured hand, as much to reassure and calm her as to enable the surgical resident to quickly pull away the dead, infected tissue in the pool of swirling water, which rapidly turned pinkish, then bloody red. Clumsily, with a beginner’s uncertainty of how to proceed, I tried to distract this little patient from her traumatic daily confrontation with terrible pain. I tried talking to her about her home, her family, her school—almost anything that might draw her vigilant attention away from her suffering. I could barely tolerate the daily horror: her screams, dead tissue floating in the blood-stained water, the peeling flesh, the oozing wounds, the battles over cleaning and bandaging. Then one day, I made contact. At wit’s end, angered at my own ignorance and impotence, uncertain what to do besides clutching the small hand, and in despair over her unrelenting anguish, I found myself asking her to tell me how she tolerated it, what the feeling was like of being so badly burned and having to experience the awful surgical ritual, day after day after day. She stopped, quite surprised, and looked at me from a face so disfigured it was difficult to read the expression; then, in terms direct and simple, she told me. While she spoke, she grasped my hand harder and neither screamed nor fought off the surgeon or the nurse. Each day from then on, her trust established, she tried to give me a feeling of what she was experiencing. By the time my training took me off this rehabilitation unit, the little burned patient seemed noticeably better able to tolerate the debridement. But whatever effect I had had on her, her effect on me was greater. She taught me a grand lesson in patient care: that it is possible to talk with patients, even those who are most distressed, about the actual experience of illness, and that witnessing and helping to order that experience can be of therapeutic value.

The other memorable patient from my medical school days was an elderly woman who suffered chronic cardiovascular effects of the syphilis she had acquired from a serviceman in World War I. I saw her as an outpatient. Through months of conversations she gave me a poignant sense of what it was like to bear the stigma of syphilis; she showed me how it affected her relations with her family and the men she met, leaving her shunned and isolated. Each week she would detail for me the tragic personal experiences that had resulted from her diagnosis years before. Over time I realized that there were two sets of long-term problems: the insidious medical complications of the course of her chronic syphilis and the life trajectory that her illness had marked and inexorably shaped. I recognized, furthermore, that my medical training systematically educated me about the former but tended to discount and in certain ways even blind me to the latter. This patient, like her much younger counterpart, edified me about the difference between the patient’s experience of illness and the doctor’s attention to disease—a key distinction I will develop in the course of this book.

Over the past two decades, my interest in how chronic illness is lived and responded to by real people has led me to conduct clinical and ethnographic studies of the experience of illness among patients in China and North America. These studies have been published in technical articles and in books written for an audience of academic specialists. My clinical work, again centered on the psychological and social aspects of chronic medical illness, also has been described for a fairly narrow professional readership. My aim in this book is altogether different. I write here to explain to patients, their families, and their practitioners what I have learned from a career passionately devoted to this interest. I write because I wish to popularize a technical literature that would be of great practical value for those who must live with, make sense of, and care for chronic illness. Indeed, I will argue that the study of the experience of illness has something fundamental to teach each of us about the human condition, with its universal suffering and death.

Nothing so concentrates experience and clarifies the central conditions of living as serious illness. The study of the process by which meaning is created in illness brings us into the everyday reality of individuals like ourselves, who must deal with the exigent life circumstances created by suffering, disability, difficult loss, and the threat of death. Yes, chronic illness teaches us about death; the process of mourning for losses is as central to growing old as it is to healing. Illness narratives edify us about how life problems are created, controlled, made meaningful. They also tell us about the way cultural values and social relations shape how we perceive and monitor our bodies, label and categorize bodily symptoms, interpret complaints in the particular context of our life situation; we express our distress through bodily idioms that are both peculiar to distinctive cultural worlds and constrained by our shared human condition.

We can envision in chronic illness and its therapy a symbolic bridge that connects body, self, and society. This network interconnects physiological processes, meanings, and relationships so that our social world is linked recursively to our inner experience. Here we are privileged to discover powers within and between us that can either amplify suffering and disability or dampen symptoms and therefore contribute to care.

This book is written as well for my fellow practitioners, colleagues in the care of the chronically ill. It is clinically useful to learn how to interpret the patient’s and family’s perspective on illness. Indeed, the interpretation of narratives of illness experience, I will argue, is a core task in the work of doctoring, although the skill has atrophied in biomedical training. That message is the same theme I wish to bring before laymen: illness has meaning; and to understand how it obtains meaning is to understand something fundamental about illness, about care, and perhaps about life generally. Moreover, an interpretation of illness is something that patients, families, and practitioners need to undertake together. For there is a dialectic at the heart of healing that brings the caregiver into the uncertain, fearful world of pain and disability and that reciprocally introduces patient and family into the equally uncertain world of therapeutic actions. That dialectic both enhances the therapy and makes of it and the illness a rare opportunity for moral education. One unintended outcome of the modern transformation of the medical care system is that it does just about everything to drive the practitioner’s attention away from the experience of illness. The system thereby contributes importantly to the alienation of the chronically ill from their professional caregivers and, paradoxically, to the relinquishment by the practitioner of that aspect of the healer’s art that is most ancient, most powerful, and most existentially rewarding.

The organization of this book aims to further the purposes outlined in the preceding paragraphs. Two introductory chapters set out an analytical grid to assess the meanings of illness. The next eleven chapters provide detailed accounts of particular illness experiences of chronically ill patients whom I have either studied in clinical research or treated. Each chapter highlights a different aspect of illness meanings. The last three chapters switch the interpretive emphasis from patients and families to healers. They are intended as a guide for caring for the chronically ill and as a program for altering the education of medical students and postgraduate trainees so as to improve such care. While there is much to admire and recommend in current medical practice, the care of chronic illness is not one of the great success stories of contemporary medicine. The provocative title of the final chapter is intended to suggest that when we take as our starting point the meanings of illness experiences, then our very understanding of medicine is challenged.

A note on the use of quotations from interviews with patients and physicians is in order. In chapters 3 through 14, I make extensive use of such quotations. Approximately half of these statements are direct transcriptions of audio tapes that I used to record clinical and research interviews. The other half were written down, in my own system of speed writing, during the interviews. My written notes do not capture pauses, changes in voice pitch and tone, or “ah,” “well,” and other speech sounds. They also do not show when one voice interrupts another. Because my chief concern is the ease of reading the transcripts, I have for the most part removed intrusive elements of speech from the transcriptions of audio tapes as well, except where they seemed important to the person’s meaning. This book is written for a broad audience, not a small group of experts. The speech quoted in this book, then, has been altered—perhaps tightened and simplified is more exact—but in only this and one other way. To protect the anonymity of patients and practitioners, I have removed or changed certain information that might identify them. When I have made such changes, I have drawn on information from patients with similar problems to make the alteration valid in the light of the experiences of the patient group as a whole.

ARTHUR KLEINMAN, MD

Cambridge, Massachusetts Winter 1986–87

Preface to the 2020 Edition

This new edition appears more than thirty years after The Illness Narratives was originally published. I wrote the book in the late 1980s at a time when my own academic career was still in its early phase. Now, all these years later, I am in the final phase of that career, and the book has had a life all of its own.

I was told by several editors then that if I really wanted to attract a popular audience, I needed to start with the patients’ stories and should put the first two conceptual chapters, which introduce my ideas, at the very end of the book. This I declined to do because, even though I hoped for a wider audience, I felt strongly that the book needed to begin with the conceptual framing that had emerged from my research and teaching. I was, after all, not only a clinician but also an academic in both anthropology and psychiatry, and I wanted the book to reveal the important contribution that anthropology—the study of the social and personal worlds in which we live and our culturally shaped beliefs and understanding—makes to health care and medicine. Those editors were right, however.

While The Illness Narratives was widely and generously reviewed, its readership at the outset seemed limited to physicians and other health professionals, usually academics, as well as fellow social scientists and humanists. This shouldn’t have surprised me. The late 1980s was a time when a gathering wave of firsthand patient and family narratives of suffering and care was breaking, while physician accounts of patients’ experiences—which had been popular in the past—were decreasing, as if they were on the opposite side of a rising seesaw.

Over the ensuing decades, however, The Illness Narratives increasingly drew readers who were themselves ordinary clinicians and patients and family caregivers. I know this from the large volume of letters I was receiving, which frequently included lengthy and moving accounts of deeply personal experiences.

The book was also being read by medical students and residents as part of educational reforms that aimed to deepen and humanize clinical practice. I received many invitations to lecture and give clinical rounds or master classes in medical schools and hospitals. And at those activities, I also heard from nurses, physical and occupational therapists, and social workers—all of whom were at the front lines of medical care and were reading The Illness Narratives. Over the years, again to my surprise, the book has remained popular, as if it continues to speak to readers in different eras.

I myself have used it in courses I have given at Harvard for undergraduates, medical students, and graduate students studying medical anthropology. For seventeen years, it was one of the readings I relied on for my weekly clinical rounds with residents in internal medicine at the Cambridge Hospital. From all of these activities, it became clear to me that showing is often better than telling. The stories of patients, people who could be us or our loved ones, have had a larger and seemingly more lasting effect than the theoretical frameworks that I had labored so hard to develop. Whether or not readers took up my distinction between illness experience and disease pathology, made use of the eight “explanatory model” questions and interview guide that I laid out, or utilized the various ways I tried to explain that symptoms, syndromes, and treatments came to hold personal and cultural significance, they remembered the stories. These stories seemed to reflect back to them the power and validity of their own experiences and a recognition that context and meaning, as well as history and personal biography, matter greatly for effective and truly human care.

Nonetheless, in the twenty-first century certain developments have gained greater prominence, making the reading of The Illness Narratives a different experience. No one today can doubt that medical care is profoundly destabilized by the most powerful bureaucratic, commercial, and governmental influences. Nor is there a lack of critical awareness that the culture of biomedicine, the hegemony of an economic language, and the fetishism of technology distort the purposes and objectives of care. Together these forces substitute indirect measures of efficiency for direct measures of the quality of care. They contribute significantly to poor care, to frustrated and mistrustful patients and families, and to physician burnout. They lead to the toxic experiences and cynicism of so many newly minted young clinicians, which contribute to depression, disillusionment, and worse. The patient and family narratives reprinted below offer a starkly different view of what illness and care really are about and why care in our time is so threatened. Here we have the deep experience of pain and suffering, the basic work of care, and the importance of meaning. The final chapters present an approach to reforming training and the practice of health care that, if anything, has greater pertinence today than it did three decades ago.

A moral movement for reforming care is beset by other forces, yet there is obviously a desperate need for such a popular movement. Our health care system is in disarray; professional practitioners have been proletarianized as workers in large-scale institutions; patients and families feel powerless in the face of the dominance of health care as big business and big government. My hope, then and now, was for The Illness Narratives to present a fundamental vision of medicine and health care as irreducible human activities, anchored in compassion and connection, requiring the most human (read: emotional, moral, and ethical) solutions. Throughout these decades of destructive change, I would like to think that The Illness Narratives has contributed to a kind of cult of resistance. A cult of those who fear that care is being lost, that medicine as we have come to know it is being dismantled as a human project, and that as a result we are all the poorer.

Before writing this new preface, I reread The Illness Narratives for the first time in many years and was reassured to see that the stories still hang together as a unifying whole. Yet each reflects the experiences of suffering in a unique way. In the context of the crisis of the current opioid epidemic, the frustration of managing chronic pain has again become iconic. But if anything, the meaning-centered “slow medicine” approach that I wrote about, involving the acknowledgment and affirmation of the patient’s and family’s experiences of suffering, clearly is more availing than the immediate resort to narcotic analgesics, which came to dominate pain care in the 2000s and now represents the tragic face of addiction and death in our communities.

The notion of hypochondriasis may have given way to the more cost-defined hyperutilization of health services, but the other chronic conditions covered in the book are still common and important. So many of the cases came out of my experiences of consulting with primary care physicians, working in a multidisciplinary pain clinic, and also seeing the patients of internal medicine and surgical specialists. For me, the 1970s and 1980s were a special time in the clinical application of psychiatry and anthropology to medicine and surgery. I feel that I was extraordinarily privileged to have been able to spend so much time with patients and families in clinical work and research. That time may have passed, yet I still feel that the wisdom about the art of healing I have tried to convey in The Illness Narratives continues to be relevant and important.

I also persist in believing that meaningful, caring encounters between clinicians and patients can make each party more profoundly aware of the human condition, and are healing in themselves. They are an example of acquiring and applying wisdom in the art of living. That wisdom adds purpose to life for clinicians, patients, and family carers, and, despite all the burdens of caregiving, keeps them going: enduring, surviving, overcoming. The stories in The Illness Narratives are a testament to the centrality of the corporal (lifting, bathing, feeding, ambulating) and moral (witnessing, acknowledging, affirming) acts of caregiving, as well as the relationships, presence, endurance, and reflections and memories that make illness and caregiving such quintessential human experiences.

Medical practice may have become more highly technological, yet it is still about those things I highlight in the subtitle of The Illness Narratives: “Suffering, Healing, and the Human Condition.” And so is family care and self-care. Chronic medical conditions—arthritis, asthma, diabetes, heart disease, cancer, HIV/AIDS, chronic pain, chronic fatigue, depression—constitute the book’s stories. It is simply impossible to provide high-quality care for people suffering such long-term, life-entangling disorders without making their journeys and their meaning central to their care. I hope this edition of The Illness Narratives will offer an opportunity for a wider circle of readers—professionals and lay persons—to use these stories and ideas, to give new life to caregiving, and to elevate its emotional and moral significance.

The question has at times been asked of me: If I were setting out afresh to write The Illness Narratives at this time, the beginning of the third decade of the twenty-first century, would I include new and different stories? Almost certainly I would. Diversity is at the front of everyone’s mind today. The Illness Narratives already puts a substantial emphasis on the importance of cultural diversity among patients, families, and even practitioners. But I would give even greater emphasis to poverty and racial inequality—which abound in our societies, and I address in my more recent work. I also restricted the number of illness stories from Chinese and other global settings where I have worked. Today I would balance the domestic illness narratives with more stories from patients and healers in global settings. But that would mean not just a much larger and rather different book, but a new book. That book would also need to contain more accounts of family narratives, stories told from the perspectives of parents, children, spouses, siblings, and close friends. But that is a different endeavor. For me, The Illness Narratives remains what I wanted it to be when I wrote it: stories of what is most at stake in the lived experience of illness and the meaning of care for practitioners, but also for patients and their families.

ARTHUR KLEINMAN

Harvard University

Author’s Note

Information contained in this book accurately conveys the spirit of my work as a physician and researcher, but all names, characteristics, and identifying details in the case histories have been changed.