Book Review

Living in the Shadow of Death: Tuberculosis and the social experience of illness in American history

N Engl J Med 1995; 332:476February 16, 1995

Article

Living in the Shadow of Death: Tuberculosis and the social experience of illness in American history
By Sheila M. Rothman. 319 pp. New York, BasicBooks, 1994. $25. ISBN: 0-465-03002-5

Sheila Rothman's new book is an important contribution to the growing body of scholarly literature devoted to an understanding of the history of medicine from the patient's perspective. With an approach that is self-consciously interdisciplinary — incorporating medical anthropology and literary analysis, as well as medical history — Rothman develops “illness narratives” to explore patients' experiences with tuberculosis. Drawn from diaries and personal correspondence, these narratives are finely detailed descriptions of the lives of individual patients, tracing how the experience of illness is shaped by the interplay of medical, social, religious, and cultural forces.

During the first half of the 19th century, patients with tuberculosis typically considered themselves invalids whose principal responsibility was to “improve.” Improving meant reshaping virtually every aspect of one's life to combat the disease. An outdoor life was considered optimal for patients with tuberculosis, and many men jettisoned hopes of having professional lives, instead often embarking on lengthy sea journeys. Not surprisingly, assumptions about sex roles played a large part in these decisions, with women's domestic role making it less likely that they would engage in extensive travel. For both sexes, invalidism, with its call to balance every decision against its effect on one's health, became the defining characteristic of these patients' lives.

During the second half of the century, patients increasingly became “health seekers” who adopted a more aggressive approach to regaining their health. In contrast to the invalids, whose lives were based on the assumption of debility, the health seekers embraced a more vigorous lifestyle. Rothman provides interesting insights into the profound effect of these health seekers on the migration to and development of the West, especially Colorado and California.

Rothman emphasizes that for both invalids and health seekers, physicians and medical institutions had a limited role. The illness narratives demonstrate that before the 20th century, patients controlled their own lives and medicine played a surprisingly modest part in the overall experience of illness.

With the identification of Mycobacterium tuberculosis in 1882 and the demonstration that tuberculosis was contagious (throughout the 19th century many physicians believed it was inherited), the disease and the patient became indistinguishable. Patients were placed in sanitariums, total institutions that exercised medical control and orchestrated (or tried to orchestrate) every aspect of a patient's life. Rothman cogently argues that this medicalization sharply truncated the life experiences of patients with tuberculosis. As in all total institutions, a vigorous underground culture emerged, with forbidden parties, drinking, and sexual encounters, but the imposition of medical control dramatically limited the lives of patients in sanitariums. Although both the invalid and the sanitarium patient conflated their disease with their identity, the invalid retained control over both, whereas the sanitarium patient ceded control to the physician.

Rothman's work focuses on the patient's experience and occasionally gets bogged down in details. Physicians remain in the background, and medical advances are described only in the light of their effect on the patient's experience. Those seeking an account of medicine's struggle with tuberculosis should consult Frank Ryan's The Forgotten Plague: How the Battle against Tuberculosis Was Won — and Lost (Boston: Little, Brown, 1993).

Sheila Rothman has written a lucid and frequently moving account of what it meant to live with tuberculosis before the development of antibiotics. Her careful analysis forcefully underscores the interplay among medical, social, personal, and cultural forces that determines what it means to be sick with a particular disease in a particular time and place. As we struggle to respond to the renewed threat of tuberculosis, we need to be mindful of these influences so that we can provide humane care for patients with tuberculosis, always distinguishing between the disease and the patient.

Steven C. Martin, M.D.
Albert Einstein College of Medicine, Bronx, NY 10461