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Illness as Metaphor and AIDS and its Metaphors

Picador

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.

Throughout most of their history, the metaphoric uses of TB and cancer crisscross and overlap. The Oxford English Dictionary records "consumption" in use as a synonym for pulmonary tuberculosis as early as 1398. (John of Trevisa: "Whan the blode is made thynne, soo folowyth consumpcyon and wastyng.") But the pre-modern understanding of cancer also invokes the notion of consumption. The OED gives as the early figurative definition of cancer: "Anything that frets, corrodes, corrupts, or consumes slowly and secretly." (Thomas Paynell in 1528: "A canker is a melancolye impostume, eatynge partes of the bodye.") The earliest literal definition of cancer is a growth, lump, or protuberance, and the disease's name — from the Greek karkínos and the Latin cancer, both meaning crab — was inspired, according to Galen, by the resemblance of an external tumor's swollen veins to a crab's legs; not, as many people think, because a metastatic disease crawls or creeps like a crab. But etymology indicates that tuberculosis was also once considered a type of abnormal extrusion: the word tuberculosis — from the Latin tuberculum, the diminutive of tuber, bump, swelling — means a morbid swelling, protuberance, projection, or growth. Rudolf Virchow, who founded the science of cellular pathology in the 1850s, thought of the tubercle as a tumor.

Thus, from late antiquity until quite recently, tuberculosis was — typologically — cancer. And cancer was described, like TB, as a process in which the body was consumed. The modern conceptions of the two diseases 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 mid-nineteenth century, nobody could have identified leukemia as a form of cancer.) And it was not possible definitively to separate cancer from TB until after 1882, when tuberculosis was discovered to be a bacterial infection. Such advances in medical thinking enabled the leading metaphors of the two diseases to become truly distinct and, for the most part, contrasting. The modern fantasy about cancer could then begin to take shape — a fantasy which from the 1920s on would inherit most of the problems dramatized by the fantasies about TB, but with the two diseases and their symptoms conceived in quite different, almost opposing, ways.

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TB is understood as a disease of one organ, the lungs, while cancer is understood as a disease that can turn up in any organ and whose outreach is the whole body.

TB is understood as a disease of extreme contrasts: white pallor and red flush, hyperactivity alternating with languidness. The spasmodic course 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. 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, passionate resignation — thought to be typical of TB. The tubercular is pallid some of the time; the pallor of the cancer patient is unchanging.

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, 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. The disease, often discovered by chance or through a routine medical checkup, can be far advanced without exhibiting any appreciable symptoms. One 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.

TB was — still is — thought to produce spells of euphoria, increased appetite, exacerbated sexual desire. Part of the regimen for patients in The Magic Mountain is a second breakfast, eaten with gusto. Cancer is thought to cripple vitality, make eating an ordeal, deaden desire. Having TB was imagined to be an aphrodisiac, and to confer extraordinary powers of seduction. Cancer is considered to be de-sexualizing. But it is characteristic of TB that many of its symptoms are deceptive — liveliness that comes from enervation, rosy cheeks that look like a sign of health but come from fever — and an upsurge of vitality may be a sign of approaching death. (Such gushes of energy will generally be self-destructive, and may be destructive of others: recall the Old West legend of Doc Holliday, the tubercular gunfighter released from moral restraints by the ravages of his disease.) Cancer has only true symptoms.

TB is disintegration, febrilization, dematerialization; it is a disease of liquids — the body turning to phlegm and mucus and sputum and, finally, blood — and of air, of the need for better air. Cancer is degeneration, the body tissues turning to something hard. Alice James, writing in her journal a year before she died from cancer in 1892, speaks of "this unholy granite substance in my breast." But this lump is alive, a fetus with its own will. Novalis, in an entry written around 1798 for his encyclopedia project, defines cancer, along with gangrene, as "full-fledged parasites — they grow, are engendered, engender, have their structure, secrete, eat." Cancer is a demonic pregnancy. St. Jerome must have been thinking of a cancer when he wrote: "The one there with his swollen belly is pregnant with his own death" ("Alius tumenti aqualiculo mortem parturit"). Though the course of both diseases is emaciating, losing weight from TB is understood very differently from losing weight from cancer. In TB, the person is "consumed," burned up. In cancer, the patient is "invaded" by alien cells, which multiply, causing an atrophy or blockage of bodily functions. The cancer patient "shrivels" (Alice James's word) or "shrinks" (Wilhelm Reich's word).

TB is a disease of time; it speeds up life, highlights it, spiritualizes it. In both English and French, consumption "gallops." Cancer has stages rather than gaits; it is (eventually) "terminal." Cancer works slowly, insidiously: the standard euphemism in obituaries is that someone has "died after a long illness." Every characterization of cancer describes it as slow, and so it was first used metaphorically. "The word of hem crepith as a kankir," Wyclif wrote in 1382 (translating a phrase in II Timothy 2:17); and among the earliest figurative uses of cancer are as a metaphor for "idleness" and "sloth." Metaphorically, cancer is not so much a disease of time as a disease or pathology of space. Its principal metaphors refer to topography (cancer "spreads" or "proliferates" or is "diffused"; tumors are surgically "excised"), and its most dreaded consequence, short of death, is the mutilation or amputation of part of the body.

TB is often imagined as a disease of poverty and deprivation — of thin garments, thin bodies, unheated rooms, poor hygiene, inadequate food. The poverty may not be as literal as Mimi's garret in La Bohème; the tubercular Marguerite Gautier in La Dame aux camélias lives in luxury, but inside she is a waif. In contrast, cancer is a disease of middle-class life, a disease associated with affluence, with excess. Rich countries have the highest cancer rates, and the rising incidence of the disease is seen as resulting, in part, from a diet rich in fat and proteins and from the toxic effluvia of the industrial economy that creates affluence. The treatment of TB is identified with the stimulation of appetite, cancer treatment with nausea and the loss of appetite. The undernourished nourishing themselves — alas, to no avail. The overnourished, unable to eat.

The TB patient was thought to be helped, even cured, by a change in environment. There was a notion that TB was a wet disease, a disease of humid and dank cities. The inside of the body became damp ("moisture in the lungs" was a favored locution) and had to be dried out. Doctors advised travel to high, dry places — the mountains, the desert. But no change of surroundings is thought to help the cancer patient. The fight is all inside one's own body. It may be, is increasingly thought to be, something in the environment that has caused the cancer. But once cancer is present, it cannot be reversed or diminished by a move to a better (that is, less carcinogenic) environment.

TB is thought to be relatively painless. Cancer is thought to be, invariably, excruciatingly painful. TB is thought to provide an easy death, while cancer is the spectacularly wretched one. For over a hundred years TB remained the preferred way of giving death a meaning — an edifying, refined disease. Nineteenth-century literature is stocked with descriptions of almost symptomless, unfrightened, beatific deaths from TB, particularly of young people, such as Little Eva in Uncle Tom's Cabin and Dombey's son Paul in Dombey and Son and Smike in Nicholas Nickleby, where Dickens described TB as the "dread disease" which "refines" death

of its grosser aspect ... in which the struggle between soul and body is so gradual, quiet, and solemn, and the result so sure, that day by day, and grain by grain, the mortal part wastes and withers away, so that the spirit grows light and sanguine with its lightening load....

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Excerpted from Illness as Metaphor and AIDS and its Metaphors by Susan Sontag. Copyright © 1978 Susan Sontag. Excerpted by permission of Picador.
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