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January 3, 2001

The Sick Role in Literature and Society

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JAMA. 2001;285(1):93. doi:10.1001/jama.285.1.93-JMS0103-5-1

Disease, illness, and death have captivated the literary imagination since antiquity. A striking example of illness as a fundamentally social state, in which being viewed as sick separates one from those who are healthy, can be found in Sophocles' Philoctetes, the drama of an archer whose putrid wound causes his comrades to abandon him on the way to Troy. While the sick are no longer ostracized in such an extreme manner, illness still confers a unique role that merits closer scrutiny: the sick role.

Physical or mental suffering garners the label of sickness when others—most powerfully, physicians—acknowledge that it impairs social functioning. In the field of medical sociology, "disease" describes biomedical changes in health and "illness" refers to the subjective experience of disease, while "sickness" encompasses the social dimensions of illness—how being ill affects one's role in society.1

People in the sick role may be excused from other obligations, such as work, school, or parenting. Society is willing to legitimize sickness as long as one follows culturally determined conventions of being ill, such as trying to regain health as quickly as possible, or accepting medical help in overcoming the illness.2 Those who abuse the sick role by feigning illness for a secondary gain strain this social contract. In contrast, people who have a disease with no immediately apparent signs may deny the sick role; in addition, these patients may refuse to comply with therapy because they do not appear sick.

As cultural paradigms and norms of illness shift over time, the socially defined parameters of what it means to be sick change. The fiction, poetry, and drama of a given era provide a useful measure of historical perceptions of sickness, and being alive to these representations can deepen an understanding of how the societal underpinnings of the sick role have evolved. Stories of illness become heavily imbued with social judgments with the advent of Christianity in the Middle Ages, when illness revealed as well as punished human iniquity: Boccacio's account of the Black Death in The Decameron remarks on the spiritual corruption of the citizens of Florence in shunning the sick and dying.3

An equally old but less common view of illness emphasizes the heightened awareness and insight bestowed by disability. In Greek and Roman myths, epileptic fits and altered consciousness often precede the predictions of seers and prophets. Shakespeare's famous scene of King Lear unclothed and wandering in the storm poignantly defines the link between truth and a debilitating madness. Creativity is frequently perceived in proximity to physical suffering: Homer and Milton were blind; Pope was mocked for his clubfoot; and the poet Keats wrote, "Do you not see how necessary a World of Pains and troubles is to school an Intelligence and make it a soul?"4 before dying of tuberculosis at the age of 25 years.

The discovery of the tubercle bacillus and other microorganisms in the 19th century revolutionized the popular understanding of illness. A new space between patient and disease, in which aggressive cellular "invaders" could breach immune "defenses," led to the use of military metaphors in descriptions of disease.5 This not only resulted in more rigid definitions of disease but also focused therapeutic options on quantitatively measured outcomes. The success of the Pulitzer Prize winning play Wit underscores how necessary it is to remember that treating a disease includes caring for a person. The protagonist of the play, a professor of English with terminal ovarian cancer, realizes with heartbreaking clarity that the rational and remote approach of the successful academic can fail to acknowledge that to be sick is to suffer.6

One of the dangers of the detached clinical gaze7 of modern medicine is that the patient's body becomes only a locus for surveillance, investing the medical profession with the authority to decide who is sick—and how sick—based on signs and symptoms. However, sickness can occur without a known etiology. Syndromes such as chronic fatigue and fibromyalgia8 defy easy categorizations of illness and remain difficult to treat; those afflicted by them can be disbelieved and marginalized by physicians and lay people alike.

In approaching sickness, physicians should remember that what ultimately cures Philoctetes of his malady is not medicine, but a young Greek's "recognition of his common humanity with the sick man."9 The archer goes on to become a hero in the battle of Troy—the sick man wins his war, both literally and figuratively, because of the human touch.

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