The Difference Between Illness and Disease : THE ILLNESS NARRATIVES Suffering, Healing and the Human Condition <i> by Arthur Kleinman, MD (Basic Books: $19.95; 304 pp.) </i> : AFTER THE STROKE A Journal <i> by May Sarton (W.W. Norton: $16.95; 215 pp.) </i>
When spending on health care represents nearly 11% of the gross national product, why are more Americans finding it more difficult to get the medical treatment they need at a price they can afford? It is tempting to blame the doctors, but that glosses over the problem. In “The Doctor’s Dilemma,” George B. Shaw argues that “it is not the fault of our doctors that the medical service of the community, as at present provided for, is a murderous absurdity.” Doctors, says Shaw, are as much a product of society as the rest of us and are just as susceptible to current trends, values and economic pressures.
If Shaw were alive today, he would heartily endorse Dr. Arthur Kleinman’s “The Illness Narratives,” a critique of the American health-care system that, with its pursuit of profit and its addiction to technology and quick fixes, reduces medicine to a commodity. Thus, according to Kleinman, “what counts today is not how effective the physician is in helping the chronically ill to deal with suffering, but how much time and money are spent and how much profit is left.”
Kleinman looks at medical practice through the dual vision of a physician--he is a psychiatrist in the Department of Social Medicine at Harvard Medical School--and an anthropologist--he is also a professor of anthropology at Harvard University, and he has made a special study of Chinese medicine. From this perspective, he sees the patient’s dilemma arising out of a gap between what the patient experiences and what the doctor treats . The private inner world of personal experience and the culture in which that world has taken shape are ignored in the process of treating disease rather than illness--the distinction is crucial to Kleinman’s thesis, as is the difference between “doctor” and “healer.” Kleinman infuses the theme with fresh insights and “empathic witnessing,” through the use of narrative, the stories of pain and suffering that give form and meaning to the experience of illness. “The story of a sickness may even function as a political commentary,” Kleinman observes, “pointing a finger of condemnation at perceived injustice and the personal experience of oppression. . . . Acting like a sponge, illness soaks up personal and social significance from the world of the sick person.”
The stories tell of the quiet courage it takes to live with pain, of desperation alternating with hope, of families pulled apart by the pressures of a chronically ill parent or child. In the narratives, patients emerge as complex human beings with life histories, relationships, stressful conditions at work and at home, sexual conflicts, fears, anxieties and, in the case of the poor and elderly, isolation and neglect. Each story contains a meaning that goes beyond the anatomical and psychogenic malfunctions.
A man in his late 20s suffering from paralysis of the legs is cured when he confronts his lifelong failure to stand on his own two legs before his autocratic father who had terrorized him since childhood. A 46-year-old woman from New Hampshire, after coping courageously with diabetes since childhood, sinks into despair and hopelessness when her left leg is amputated. The meaning of her demoralization lies in her strict, dour, Calvinist upbringing with its stoical denial of pain and suffering. When she learns to accept rather than deny her condition, she is able to go on with her life as a functioning member of her family and community.
A 33-year-old unmarried man who has a graduate degree suffers from abdominal pain; he is working at a low-level job and is constantly harassed by his supervisor. Kleinman finds the interpretation of this and similar cases in “unemployment, underemployment and defeating work situations . . . as well as oppressively unjust relationships. . . . The powerless in society are at greater risk for stresses they can’t control. . . . Our economic and social system places pressures on all of us, but for the powerless, the local social system does not (or cannot) deflect the impact or reduce the effect of those pressures on the person.” Kleinman found the same phenomenon among the powerless in China, and his reading of the cross-cultural literature has convinced him that this is a universal aspect of the human predicament. His challenge to the medical profession is “for the physician to engage in negotiation with the patient as colleagues involved in care as collaboration.”
How would Kleinman interpret the illness experience of a 73-year-old woman, a celebrated poet and novelist, living alone in rural Maine, reveling in her house, her garden, her pets, blessed with a circle of devoted friends, besieged with mail and invitations to give readings and lectures around the country? Two years ago, at age 73, May Sarton suffered a stroke that threatened to destroy her prized independence, her pleasure in the dailiness of living. “After the Stroke” is her illness narrative, a tale of self-healing that owes less to medical intervention--she finds the hospital atmosphere “deadly”--than to “listening to the tree frogs all night for I couldn’t sleep, waking late to the insistent coos of the wood pigeons--and at this moment the hush-hushing of the ocean. Being alive as far as I am able to the instant .” She recalls her distinguished father, whom she loved, and her beautiful mother, with whom she had a difficult relationship, but she does not dwell on the past.
In an earlier work, “May Sarton: A Self-Portrait,” published in 1982, she described the core of her life as an effort to “keep my center strong and not dispersed.” But the center will not always hold against the onslaught of pain and helplessness. “The body is part of our identity,” she writes, “and its afflictions and discontents, its donkey-like refusal to do what ‘ought’ to be done, destroys self-respect.” After the stroke, there are periods of intense loneliness, of the feeling that she is living on a “plateau of misery.”
At times, the journal reveals a cantankerous woman who is almost neurotically self-absorbed--but then nothing concentrates the mind so wonderfully on one’s self as a siege of painful illness. And she is always honest with herself and others, always finding comfort in her friends and in the mundane--food and flowers and the changing seasons. At the end of her journal, as she faces her 75th birthday, she recognizes that she has taken a “leap into old age,” but she has also learned that she can draw strength from her physical and spiritual resources. She has come through, and she can “rejoice in the life I have recaptured and in all that still lies ahead.”