Illness Narratives: Suffering, Healing, and the Human Condition

Author: Arthur Kleinman

Synopsis

Why is there such a wide gulf between the concern of patients about their illness, and the primary focus of doctors on disease? Why do physicians commonly show an ‘overriding interest in disease’ and exhibit a ‘disregard of illness’ (page 131). This book addresses these worrying healthcare questions by highlighting the importance of the illness narrative, ‘a story the patient tells… to give coherence to the…long-term course of suffering‘ (page 49). The author demonstrates how this narrative takes into account the views and concerns of the patient about the cause, course, impact, and treatment of the disease (pages 4, 29 and 121). He explores the reasons why doctors are unwilling to listen to this narrative, which, he stresses, is ‘the original and most fundamental account of illness’, and ‘the primary ground of care’ (page 130). The book emphasises the importance of ‘legitimating the patient’s illness experience’ and urges doctors to ‘understand the illness experience as the patient understands, perceives, and feels it’ (pages 17 and  232).

The book paints a refreshing and touching picture of what it is to suffer a chronic illness. The author portrays those afflicted with chronic illness as heroes who endure their long suffering ‘with grace and spirit and even humor‘ (pages 44-45). He delves into the daily lives of the chronically ill, depicting them as ‘revisionist historians, refiguring past events in light of recent changes’, and as ‘diarists recording the minute ingredients of current difficulties and triumphs’ (page 48). The book reveals how the ill deal with their daily challenges often under the inescapable ‘threat of death or the experience of dying’ (page 156). The author shows how chronically ill patients learn to attribute meaning to their suffering, thereby viewing their illness positively as ‘an occasion for growth, a point of departure for something deeper and finer, a model of and for what is good‘ (pages 9 and 144).

What is the role of the physician in caring for the chronically ill? The author, a psychiatrist, defines four critical roles for the doctor looking after sufferers of chronic illness. These are to help the patient to ‘gain control over fear‘, to ‘come to terms with their overwhelming anger‘, to ‘restore confidence in body and self’, and to ‘escape both excessive feelings of guilt over failures in life activities and jealousy toward others who are free of serious disorder’ (page 39). The author emphasises the important, but largely forgotten, duty of doctors in helping their patients ‘prepare for death‘, a function he regrets has been replaced by the ‘mandate of medical technology’ to keep the patient alive at any cost’ (pages 39 and 153).

The book recognises that the care of the chronically ill is ‘difficult and burdensome for even the most attentive and gifted of healers’ (page 225). It therefore outlines several approaches to aid physicians in fulfilling their obligations, for example urging doctors to ‘relinquish the myth of cure‘, and rather concentrate on the more realistic goal of ‘reduction of disablement‘ (page 229). The author particularly urges the practitioner to resist the ‘wholly unrealistic popular expectation that all diseases should be treatable and that no medical encounter should lead to a negative outcome’ (page 241).

The book is brimming with real clinical anecdotes that beautifully illustrate the author’s key messages. An example is a lady with relentlessly progressive diabetes whose fear is not of death, ‘but the seemingly relentless march toward becoming an invalid‘ (page 35). Another story is of a police lieutenant with chronic back pain who finds that surgery provides him ‘a latent social function’ by earning him sympathy from others (pages 61-68). The author also relates the story of a secretary who ‘holds firmly to the idea that she has a basic deficit in energy, a weakness at the core-a problem in her vitality…’ (page 117). We learn from the anecdotes of the counsellor ‘whose aspirations were not undermined but heightened by chronic illness’, and the architect who died inexplicably after obsessing about the terror of death; ‘he is convinced he will die, he gives up, and he suffers morbid anxiety about death’ (pages 138, 151 and 156).

The author discussed many diseases in appropriate contexts. For example, he explores the cultural meanings of contemporary and historical diseases such as cancer, AIDS, bubonic plague, and hysteria (pages 18-21). He reviewed the stigma and shame of illness with case anecdotes of conditions such as port wine stains, eczema, leprosy, and surgical scars. He also made reference to many key medical figures such as neurologist George Beard, who coined the now defunct term neurasthenia, and Silas Weir Mitchell who further defined the disorder (pages 100-101).

Opinion

This is an important book for doctors because it highlights the importance of taking the patient’s perspective of disease. The book is eloquently written and infused with deep meanings, and uses illustrative stories to impart profound lessons. The prose is brilliant even if at times marred by difficult terminologies such as ‘semiotics’, ‘anamnesis’, and ‘tendentious delegitimations’. The author’s passion for the subject is however palpable throughout the book. The work is a tribute to all those who suffer the burden of illness and suffering, and it is a reminder to their carers of their dignity and courage.

Overall assessment

This book goes to the core issues of medical practice, the empathic care of the unwell, and the sacredness of the doctor-patient relationship. It highlights the importance of taking the perspectives of the people who suffer chronic illness. It unravels the meaning in suffering and clarifies the role of doctors in managing disease and death. The book reminds us of what medicine is all about, and I recommend it to all doctors.

Book details

Publisher, Year: Basic Books, 1988
ISBN: 978-0-465-03204-4
Number of Chapters: 16
Number of Pages: 284
Price: £12.20
Star rating: 4