Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.
I want to describe not what it’s really like to emigrate to the kingdom of the ill and to live there, but the punitive or sentimental fantasies concocted about that situation; not real geography but stereotypes of national character. My subject is not physical illness itself but the uses of illness as a figure or metaphor. My point is that illness is not a metaphor, and that the most truthful way of regarding illness—and the healthiest way of being ill—is one most purified of, most resistant to, metaphoric thinking. Yet it is hardly possible to take up one’s residence in the kingdom of the ill unprejudiced by the lurid metaphors with which it has been landscaped. It is toward an elucidation of those metaphors, and a liberation from them, that I dedicate this inquiry.
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 first of all 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 what causes TB 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 first 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 is as clear and its treatment as efficacious as those of TB have become.
Although the way in which disease mystifies us is grounded in new expectations, the disease itself (once TB, now cancer) 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.” His observation is offered in support of anti-intellectual pieties and facile compassion all too triumphant in contemporary medicine and psychiatry: “Patients who consult us because of their suffering and their distress and their disability have every right to resent being plastered with a damning index tab.” Dr. Menninger recommends that physicians generally abandon “names” and “labels”—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—a tremendous fear surrounded TB, and it was common to conceal the identity of their disease from tuberculars and, after their death, 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.”
The fear surrounding cancer being even more acute, so is the concealment. 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, where—in part because of the doctors’ fear of malpractice suits—there is now much more candor with patients, the country’s largest cancer hospital mails routine communications and bills to out-patients 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, one’s very job, patients who know what they have tend themselves 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 general clause exempting from disclosure matters that constitute “unwarranted invasion of personal privacy.” It is the only disease mentioned.
The amount of lying to and by cancer patients is, in part, a reflection of the modern attitude toward death. As dying has come to be regarded in advanced industrial societies as a shameful, unnatural event, so that disease which is widely considered a synonym for death has come to seem shameful, something to deny. The policy of hiding or equivocating about the nature of their disease to cancer patients reflects the conviction that dying people are best spared the news that they are dying, and that the good death is the split-second one, or the one that happens while we’re unconscious or asleep. Still, the denial of death does not explain the extent of the lying and the wish to be lied to, doesn’t 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: illomened, abominable, disgusting, offensive to the senses. Cardiac disease implies a weakness, trouble, failure that is mechanical; there is no scandal, it has 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.
Throughout most of their history, the metaphoric uses of TB and cancer criss-cross and overlap. The Oxford English Dictionary records “consumption” in use as a synonym for pulmonary tuberculosis as early as 1398.^1 But the pre-modern understanding of cancer also invokes the notion of consumption. The OED gives as the earliest general definition of cancer: “anything that frets, corrodes, corrupts, or consumes slowly and secretly.” (Thomas Paynel in 1528: “A canker is a melancolye impostume, eatynge partes of the bodye.”) Conversely, the earliest literal definition of cancer—from the Greek karkínos and the Latin cancer, both meaning crab—is a growth, lump, or protuberance. (Hence the disease’s name, inspired by the resemblance of the swollen veins surrounding an external tumor to a crab’s legs; not, as many people think, because a metastatic disease crawls or creeps like a crab.) And etymology indicates that tuberculosis—from the Latin tuber, meaning bump, swelling—was also once considered a type of abnormal extrusion; the word tuberculosis means a morbid swelling, protuberance, projection, or growth.2 Rudolf Virchow, who founded the science of cellular pathology in the 1850s, thought of the tubercle as a tumor.
Thus, throughout its premodern history, tuberculosis was—typologically—cancer. And cancer was described as a process, like TB, in which the body was consumed. The conceptions of the two diseases as we inherit them today could not be set until the advent of cellular pathology. Only with the microscope was it possible to grasp the distinctiveness of cancer, as a type of cellular activity, and to understand that the disease did not always take the form of an external or even palpable tumor. (Before the nineteenth century nobody could have identified leukemia as a form of cancer.) And it was not possible definitively to separate cancer from TB until the 1880s, when the germ theory of TB became established in medical thinking. It was then that the leading metaphors of the two diseases became truly distinct and, for the most part, contrasting. And it was about then that the modern fantasy about cancer began to take shape—a fantasy which from the 1920s on would inherit the scope of and most of the problems dramatized by the fantasies about TB, but with the two diseases and their symptomology imagined and identified in quite different—indeed, almost opposing—ways.
TB is understood as a disease of one organ, the lungs, while cancer is understood as a system-wide disease. TB is understood as a disease of extreme contrasts: white pallor and red flush, vitality alternating with languidness. The spasmodic evolution of the disease is illustrated by what is thought of as the prototypical TB symptom, coughing. The sufferer is wracked by coughs, then sinks back, recovers breath, breathes normally. Then coughs again. In contrast, cancer is a disease of growth (sometimes visible; more characteristically, inside), of abnormal, ultimately lethal growth that is measured, incessant, steady. Although there may be periods in which tumor growth is arrested (remissions), cancer produces no contrasts like the oxymorons of behavior—febrile activity, hectic inactivity, passionate resignation—thought to be typical of TB, nothing comparable to TB’s paradoxical symptoms: liveliness that comes from enervation, rosy cheeks that look like a sign of health but come from fever. The tubercular is pallid some of the time; the pallor of the cancer patient doesn’t change.
TB makes the body transparent. The X-rays which are the standard diagnostic tool permit one, often for the first time, to see one’s insides—to become transparent to oneself. While TB is understood to be, from early on, a disease rich in visible symptoms (progressive emaciation, coughing, languidness, fever), and can be suddenly and dramatically revealed (the blood on the handkerchief), in cancer the main symptoms are thought to be, characteristically, invisible—until the last stage, when it is too late. Generally one doesn’t know one has cancer. The disease is often discovered by chance or through a routine medical check-up, and can be far advanced without exhibiting any appreciable symptoms. The patient has an opaque body that must be taken to a specialist to find out if it contains cancer. What the patient cannot perceive the specialist will determine by analyzing tissues taken from the body. TB patients may see their X-rays or even possess them: the patients at the sanatorium in The Magic Mountain carry theirs around in their breast pockets. Cancer patients don’t look at their biopsies.
The same etymology is given in the standard French dictionaries. "La tubercule" was introduced in the sixteenth century by Ambroise Paré from the Latin tuberculum, meaning "petite bosse" (little lump), which comes from the Latin tuber, meaning "truffe" or "excroissance." In Diderot's Encyclopédie (1765), the entry on tuberculosis cites the definition given by the English physician Richard Morton in his Phtisiologia (1689): "des petits tumeurs qui paraissent sur la surface du corps."↩
The same etymology is given in the standard French dictionaries. “La tubercule” was introduced in the sixteenth century by Ambroise Paré from the Latin tuberculum, meaning “petite bosse” (little lump), which comes from the Latin tuber, meaning “truffe” or “excroissance.” In Diderot’s Encyclopédie (1765), the entry on tuberculosis cites the definition given by the English physician Richard Morton in his Phtisiologia (1689): “des petits tumeurs qui paraissent sur la surface du corps.”↩