The Illness Narratives

From one of America's most celebrated psychiatrists, the book that has taught generations of healers why healing the sick is about more than just diagnosing their illness. Modern medicine treats sick patients like broken machines -- figure out what is physically wrong, fix it, and send the patient on their way. But humans are not machines. When we are ill, we experience our illness: we become scared, distressed, tired, weary. Our illnesses are not just biological conditions, but human ones. It was Arthur Kleinman, a Harvard psychiatrist and anthropologist, who saw this truth when most of his fellow doctors did not. Based on decades of clinical experience studying and treating chronic illness, The Illness Narratives makes a case for interpreting the illness experience of patients as a core feature of doctoring. Before Being Mortal, there was The Illness Narratives. It remains today a prescient and passionate case for bridging the gap between patient and practitioner.

From one of America's most celebrated psychiatrists, the book that has taught generations of healers why healing the sick is about more than just diagnosing their illness. Modern medicine treats sick patients like broken machines -- figure out what is physically wrong, fix it, and send the patient on their way. But humans are not machines. When we are ill, we experience our illness: we become scared, distressed, tired, weary. Our illnesses are not just biological conditions, but human ones. It was Arthur Kleinman, a Harvard psychiatrist and anthropologist, who saw this truth when most of his fellow doctors did not. Based on decades of clinical experience studying and treating chronic illness, The Illness Narratives makes a case for interpreting the illness experience of patients as a core feature of doctoring. Before Being Mortal, there was The Illness Narratives. It remains today a prescient and passionate case for bridging the gap between patient and practitioner.

For most of literary history, personal confessions about illness were considered too intimate to share publicly. By the mid-twentieth century, however, a series of events set the stage for the emergence of the illness narrative. The increase of chronic disease, the transformation of medicine into big business, the women’s health movement, the AIDS/HIV pandemic, the advent of inexpensive paperbacks, and the rise of self-publishing all contributed to the proliferation of narratives about encounters with medicine and mortality. While the illness narrative is now a staple of the publishing industry, the genre itself has posed a problem for literary studies. What is the role of criticism in relation to personal accounts of suffering? Can these narratives be judged on aesthetic grounds? Are they a collective expression of the lost intimacy of the patient-doctor relationship? Is their function thus instrumental—to elicit the reader’s empathy? To answer these questions, Ann Jurecic turns to major works on pain and suffering by Susan Sontag, Elaine Scarry, and Eve Sedgwick and reads these alongside illness narratives by Jean-Dominique Bauby, Reynolds Price, and Anne Fadiman, among others. In the process, she defines the subgenres of risk and pain narratives and explores a range of critical responses guided, alternately, by narrative empathy, the hermeneutics of suspicion, and the practice of reparative reading. Illness as Narrative seeks to draw wider attention to this form of life writing and to argue for new approaches to both literary criticism and teaching narrative. Jurecic calls for a practice that’s both compassionate and critical. She asks that we consider why writers compose stories of illness, how readers receive them, and how both use these narratives to make meaning of human fragility and mortality.

A moving memoir and an extraordinary love story that shows how an expert physician became a family caregiver and learned why care is so central to all our lives and yet is at risk in today's world. When Dr. Arthur Kleinman, an eminent Harvard psychiatrist and social anthropologist, began caring for his wife, Joan, after she was diagnosed with early-onset Alzheimer's disease, he found just how far the act of caregiving extended beyond the boundaries of medicine. In The Soul of Care: The Moral Education of a Husband and a Doctor, Kleinman delivers a deeply humane and inspiring story of his life in medicine and his marriage to Joan, and he describes the practical, emotional and moral aspects of caretaking. He also writes about the problems our society faces as medical technology advances and the cost of health care soars but caring for patients no longer seems important. Caregiving is long, hard, unglamorous work--at moments joyous, more often tedious, sometimes agonizing, but it is always rich in meaning. In the face of our current political indifference and the challenge to the health care system, he emphasizes how we must ask uncomfortable questions of ourselves, and of our doctors. To give care, to be "present" for someone who needs us, and to feel and show kindness are deep emotional and moral experiences, enactments of our core values. The practice of caregiving teaches us what is most important in life, and reveals the very heart of what it is to be human.

What is it like to live with an illness? How do diagnostic procedures, treatments, and other encounters with medical institutions affect a patient's private and social life? By asking these types of questions, illness narratives have gained a reputation as a scientific domain in medicine in the last thirty years. Today, a patient's story plays an important role in doctor-patient communication and the development of a healing relationship. However, whereas patient experiences have been well acknowledged, methodologically reflected upon and widely collected as research data, less consideration has been invested in exploring how they work in practice. Used in the context of diagnosis, treatment, and teaching, patient stories give us a new perspective on how healthcare could be improved. Illness Narratives in Practice: Potentials and Challenges of Using Narratives in Health-related Contexts highlights the problems, challenges, and opportunities we face when using patient perspectives in practice and research in a clear format to provide readers with a comprehensive overview of this field. It investigates the epistemological foundations and communicational properties of illness narratives, as well as the pragmatic effects of using them as clinical and educational instruments. Significantly, it presents new examples from patient intakes and interviews that illustrate the disparity in communication between patients and medical professionals. The studies in this book also evaluate the experiences of medical practitioners and students who consciously use patient narratives as a tool for improved communication and diagnosis. Divided into eight sections with practical examples for medical teaching and practice, this book covers the use of patient narratives in communication training and decision making across medicine and psychotherapy. In addition, it reflects on the ethical aspects of working with a patient's personal experience of their illness, reports on cultural differences across the globe, and analyses how patients' stories are used in politics and the media. Written by scholars from multiple disciplines across clinical and theoretical fields, this rich resource provides a critical stance on the use of narratives in medical research, education, and practice.

Illness narratives have become a cultural phenomenon in the Western world. In what ways can they be seen to have aesthetic, ethical and political value? What do they reveal about experiences of illness, the relationship between the body and identity and the role of the arts in bearing witness to illness for people who are ill and those connected to them? How can they influence medicine, the arts and shape public understandings of health and illness? These questions and more are explored in Illness as Many Narratives, which contains readings of a rich array of representations of illness from the 1980s to the present. A wide range of arts and media are considered such as life writing, photography, performance, film, theatre, artists' books and animation. The individual chapters deploy multidisciplinary critical frameworks and discuss physical and mental illness. Through reading this book you will gain an understanding of the complex contribution illness narratives make to contemporary culture and the emergent field of Critical Medical Humanities.

This book investigates how being diagnosed with various disabilities impacts on identity. Once diagnosed with a disability, there is a risk that this label can become the primary status both for the person diagnosed as well as for their family. This reification of the diagnosis can be oppressive because it subjugates humanity in such a way that everything a person does can be interpreted as linked to their disability. Drawing on narrative approaches to identity in psychology and social sciences, the bio-psycho-social model and a holistic approach to disabilities, the chapters in this book understand disability as constructed in discourse, as negotiated among speaking subjects in social contexts, and as emergent. By doing so, they amplify voices that may have otherwise remained silent and use storytelling as a way of communicating the participants' realities to provide a more in-depth understanding of their point of view. This book will be of interest to all scholars and students of disability studies, sociology, medical humanities, disability research methods, narrative theory, and rehabilitation studies.

"A valuable collection. . . . The essays in the volume are all fresh, the result of recent work, and the opening chapter by Garro and Mattingly places the current trend in narrative analysis in historical context, explaining its diverse origins (and constructs) in a range of disciplines."—Shirley Lindenbaum, author of Kuru Sorcery "A good place to consult the narrative turn in medical anthropology. Thick with the richness and diversity and stubborn resistance to interpretations of human stories of illness. An anthropological antidote for too narrow a framing of the complex tangle of ways-of-being and ways-of-telling that make medicine a space of indelibly human experiences." —Arthur Kleinman, author of The Illness Narratives