Illness as Metaphor and AIDS and its Metaphors
Two diseases have been spectacularly, and similarly, encumbered by the trappings of metaphor: tuberculosis and cancer.
The fantasies inspired by TB in the last century, by cancer now, are responses to a disease thought to be intractable and capricious -- that is, a disease not understood -- in an era in which medicine's central premise is that all diseases can be cured. Such a disease is, by definition, mysterious. For as long as its cause was not understood and the ministrations of doctors remained so ineffective, TB was thought to be an insidious, implacable theft of a life. Now it is cancer's turn to be the disease that doesn't knock before it enters, cancer that fills the role of an illness experienced as a ruthless, secret invasion -- a role it will keep until, one day, its etiology becomes as clear and its treatment as effective as those of TB have become.
Although the way in which disease mystifies is set against a backdrop of new expectations, the disease itself (once TB, cancer today) arouses thoroughly old-fashioned kinds of dread. Any disease that is treated as a mystery and acutely enough feared will be felt to be morally, if not literally, contagious. Thus, a surprisingly large number of people with cancer find themselves being shunned by relatives and friends and are the object of practices of decontamination by members of their household, as if cancer, like TB, were an infectious disease. Contact with someone afflicted with a disease regarded as a mysterious malevolency inevitably feels like a trespass; worse, like the violation of a taboo. The very names of such diseases are felt to have a magic power. In Stendhal's Armance (1827), the hero's mother refuses to say "tuberculosis," for fear that pronouncing the word will hasten the course of her son's malady. And Karl Menninger has observed (in The Vital Balance) that "the very word 'cancer' is said to kill some patients who would not have succumbed (so quickly) to the malignancy from which they suffer." This observation is offered in support of anti-intellectual pieties and a facile compassion all too triumphant in contemporary medicine and psychiatry. "Patients who consult us because of their suffering and their distress and their disability," he continues, "have every right to resent being plastered with a damning index tab." Dr. Menninger recommends that physicians generally abandon "names" and "labels" ("our function is to help these people, not to further afflict them") -- which would mean, in effect, increasing secretiveness and medical paternalism. It is not naming as such that is pejorative or damning, but the name "cancer." As long as a particular disease is treated as an evil, invincible predator, not just a disease, most people with cancer will indeed be demoralized by learning what disease they have. The solution is hardly to stop telling cancer patients the truth, but to rectify the conception of the disease, to de-mythicize it.
When, not so many decades ago, learning that one had TB was tantamount to hearing a sentence of death -- as today, in the popular imagination, cancer equals death -- it was common to conceal the identity of their disease from tuberculars and, after they died, from their children. Even with patients informed about their disease, doctors and family were reluctant to talk freely. "Verbally I don't learn anything definite," Kafka wrote to a friend in April 1924 from the sanatorium where he died two months later, "since in discussing tuberculosis . . . everybody drops into a shy, evasive, glassy-eyed manner of speech." Conventions of concealment with cancer are even more strenuous. In France and Italy it is still the rule for doctors to communicate a cancer diagnosis to the patient's family but not to the patient; doctors consider that the truth will be intolerable to all but exceptionally mature and intelligent patients. (A leading French oncologist, has told me that fewer than a tenth of his patients 'know they have cancer.) In America -- in part because of the doctors' fear of malpractice suits -- there is now much more candor with patients, but the country's largest cancer hospital mails routine communications and bills to outpatients in envelopes that do not reveal the sender, on the assumption that the illness may be a secret from their families. Since getting cancer can be a scandal that jeopardizes one's love life, one's chance of promotion, even one's job, patients who know what they have tend to be extremely prudish, if not outright secretive, about their disease. And a federal law, the 1966 Freedom of Information Act, cites "treatment for cancer" in a clause exempting from disclosure matters whose disclosure "would be an unwarranted invasion of personal privacy." It is the only disease mentioned.
All this lying to and by cancer patients is a measure of how much harder it has become in advanced industrial societies to come to terms with death. As death is now an offensively meaningless event, so that disease widely considered a synonym for death is experienced as something to hide. The policy of equivocating about the nature of their disease with cancer patients reflects the conviction that dying people are best spared the news that they are dying, and that the good death is the sudden one, best of all if it happens while we're unconscious or asleep. Yet the modern denial of death does not explain the extent of the lying and the wish to be lied to; it does not touch the deepest dread. Someone who has had a coronary is at least as likely to die of another one within a few years as someone with cancer is likely to die soon from cancer. But no one thinks of concealing the truth from a cardiac patient: there is nothing shameful about a heart attack. Cancer patients are lied to, not just because the disease is (or is thought to be) a death sentence, but because it is felt to be obscene -- in the original meaning of that word: ill-omened, abominable, repugnant to the senses. Cardiac disease implies a weakness, trouble, failure that is mechanical; there is no disgrace, nothing of the taboo that once surrounded people afflicted with TB and still surrounds those who have cancer. The metaphors attached to TB and to cancer imply living processes of a particularly resonant and horrid kind.