Reading the Margins

On Illness as Metaphor

Tessa Fontaine

“Mom would not say that she had ‘c’ because she feared it would have power over her,” writes an anonymous annotator in my borrowed copy of Susan Sontag’s Illness as Metaphor. The book is from the University of Alabama’s library; it’s ragged, musty, and full of somebody else’s margin notes. Sontag writes: “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” (7). Beside this quotation, the annotator writes, “by not saying the ‘c’ word, it did have power over Mom.”

Illness as Metaphor challenges the “blame the victim” language and stereotyping used to describe the ill. It focuses on tuberculosis and cancer, which have been associated with personal psychological traits, particularly debunking the myth that some illnesses are a manifestation of repressed passion or trauma.

TB, for much of the 19th century, was considered a romantic illness, an indication of a sensitive, creative person who was made more interesting by the disease. Shelley, Keats, Chopin, and other lauded artists had TB and, from their letters, didn’t seem entirely unhappy about it. The disease acted as a metaphor for a kind of person they wished themselves to be.

The language used to describe cancer, Sontag observes, often suggests one’s mind has betrayed one’s body—in the scientific literature Sontag encounters prior to the book’s 1978 publication, cancer is blamed on the patient for its growth out of repressed feelings.

Cancer, on the other hand, conveys no romance. The language used to describe cancer, Sontag observes, often suggests one’s mind has betrayed one’s body—in the scientific literature Sontag encounters prior to the book’s 1978 publication, cancer is blamed on the patient for its growth out of repressed feelings. Many cancer patients, the studies report, indicated feelings of isolation, depression, or having suffered a major loss or trauma in their lives—feelings, Sontag is quick to note, that most people in the general population have also experienced. The danger in linking personality or experience and disease is the implication that one’s character causes illness. Through this logic, the patient is made to believe that she deserves cancer.

I first read Illness as Metaphor in 2010, while sitting on an old leather armchair in the University of Alabama’s library. I was 26 and, in doing some research for a course I was taking, came upon the book. Discovering the soft pencil notes another reader left inside Illness as Metaphor, I kept stopping to look around me. Where was she? Though I was reading it over thirty years after the book was printed, and this annotator could have had the book at any point, I was sure that she—I decided immediately it was a young woman—must be sitting nearby. I felt so close to her. I was intimately bound to this stranger by how much I recognized the pain and fear in the questions she was trying to work out alongside Sontag’s words. Her comments were not saved for their own space in a blank journal, not part of a conversation with a friend or her mother. Why? Did she feel the shame to which Sontag alludes?

opens in a new windowThe Electric Woman by Tessa Fontaine

The annotator underlined sentences throughout the book, like this one: “Fatal illness has always been viewed as a test of moral character” (41). Beside it, in large block letters, she has written: ASK.

Who was she going to ask? And what, exactly? And did she ever?

The annotator’s ghostly words widen my world. I want to hug this young person struggling to make sense of an illness her mom seems unable to confront directly.

• • •

You are so young and strongYou will beat this. You will win.

At 21, I was diagnosed with a rare slow-growing cancer. It’s mostly seen in elderly people, a tumor that caused appendicitis and was found after my appendix’s removal, though they could not determine if more cancer was inside, and so treated it as if there was. I had to leave college for a semester, have a massive surgery that removed a bunch of my digestive system.

But I was a fighter. This was one of the strangest things. The language of warfare.

But I was a fighter.

This was one of the strangest things. The language of warfare.

Sontag adeptly identifies this—the “invasive” cells that “colonize” from the tumor to other sites in the body are often too much for the body’s “defenses.” The patient must “do battle” against the invaders. Otherwise, they will grow like a “cancer.”

See, there? Cancer means both itself and something much, much worse.

I understand the impulse to use battle-speak, and the language of war is our clearest way of communicating fear and aggression. But the problem with calling a patient a “fighter” is that there’s the possibility that she didn’t fight hard enough. It puts the agency of wellness into the will and strength of the individual instead of the power of disease.

Only the strong survive.

She’s fighting for her life.

• • •

In 1988, Sontag published a follow-up book, AIDS and Its Metaphors, in which she reveals that she wrote Illness as Metaphor while receiving treatment for breast cancer. Sontag’s criticism comes from experience. And in this companion text, she suggests that while cancer is no longer as mired by blame and shame, AIDS has taken its place. Ultimately, however, the problem is not the individual disease for which the victim is being blamed but the cultural storytelling that is used to explain the illness. It is the metaphor and myth of a disease—what having the disease means psychologically to the patient and others, beyond the actual experience of it—that is most damaging.

• • •

I read and reread Illness as Metaphor because I hoped it meant that you could cope with illness through the use of metaphors, or metaphors could teach you how to talk about illness, or that illness really is just a metaphor, something more or less than what it is at its dirty little core. But there’s the problem of metaphors again. There is no dirty little core. A body is a body.

By the time I had cancer in 2005, social perception had largely shifted from blaming the ill. I was so young and otherwise healthy that most of the reactions I received were of shock and compassion. But the lasting impact of the warrior metaphor for those who face illness persists—I was made student speaker at graduation for the University of California at Santa Barbara at least in part because I was a survivor. A fighter. And the truth is, the glory felt nice. I wanted to exude the hero’s inner glow.

When I look back at my journal from when I had cancer, though, it’s clear that what scared me most was the new truth that my body could not be trusted. There had been a foreign invader, living right inside me. My body harbored secret, destructive agents. I was at war with myself—and because every metaphoric victor has its foil in its opposite, there was always the chance that somewhere within me there was the loser. I still have this secret, sneaking belief that deep in the center of most of my organs, there are massive, sticky, boiling lumps of tar. Or polyps filled with poison. Or a little army of diseases wearing armor and brandishing swords, ready to unleash.

If you believe that you are to blame for your illness, even in part, it is harder to survive, Sontag writes.

• • •

The problem with illness metaphors extends beyond the harm they can do to the individual. Modern totalitarian movements have used the language of disease to further their cause, Sontag writes. “The Nazis declared that someone of mixed ‘racial’ origin was like a syphilitic,” and “European Jewry was repeatedly analogized to a cancer that must be excised” (82). More contemporary examples abound as well. Sam Herrera, a Trump supporter and the outreach director for Stop the Magnet, an anti-illegal immigration organization in Houston, compared the city’s large undocumented population to a cancer in a 2017 interview.

Sontag writes, “to describe a phenomenon as a cancer is an incitement to violence” (83).

• • •

“C,” the annotator writes again and again. Never “cancer.” The word is too lethal. Too private. Violent. Used to describe that which is most terrible, needs to be exterminated. And yet, she explores her feelings about her mother’s cancer in the book she is reading, a library book, a public object that she eventually returns to the library. However faint, there’s some sense of reaching across the void in that act.

Dear annotator: did you ever get to talk to your mom about “c”? Did you hold her hand during her chemo? Help her choose hats?

• • •

I was lucky. Because it could not be determined whether or not there was more cancer in me, doctors recommended a surgery wherein 17 lymph nodes and a third of my small intestine were removed, my guts reconnected in new places, and then I was declared cancer-free. No chemo, no radiation needed. I was a strong, resilient soldier.

• • •

What happens to the young child of an illegal immigrant, who hears that he is a cancer on society, when he learns he has cancer? What happens to the cancer patient who believes that her disease is the worst thing our culture knows, but who also believes she may have brought that on herself? Or the person living with AIDS? With Zika? With strokes? “The people who have the real disease are also hardly helped by hearing their disease’s name constantly being dropped as the epitome of evil” (85).

• • •

What Sontag wants is a clear, direct way of talking about the disease itself. Any disease. In doing so, we may be able to get closer to a deeper cultural conversation about death, and health, and life.

What Sontag wants is a clear, direct way of talking about the disease itself. Any disease. In doing so, we may be able to get closer to a deeper cultural conversation about death, and health, and life. And though Illness as Metaphor was published nearly 40 years ago, and cancer treatments have improved, and some of the shame has been released, the book is as important as it ever was.

I don’t think my experience of cancer would have been wholly different if I’d encountered Sontag’s book five years before, while I was sick. But I do think I might have felt just a little bit less lonely. I didn’t know any other twenty-one-year-olds learning how much beer was ok to drink on a halved digestive system, or how to be secretly afraid of their own bodies. Coming across Illness as Metaphor, witnessing Sontag reaching through her experience with cancer to puzzle out why she felt as she felt—distant from herself, a metaphor—and the annotator thinking through questions of her mother’s illness and fear at that diagnosis, I felt as if I had joined a tiny collective. None of us knew each other. All of us were uncomfortable with the way we related to illness, and felt alone in our thinking. And yet that’s the lovely part. In the margins, we were not exactly alone.

Tessa Fontaine’s writing has appeared in PANK, Seneca Review, The Rumpus, Sideshow World, and elsewhere. She holds an MFA from the University of Alabama and is working on a PhD in creative writing at the University of Utah. She also eats fire and charms snakes, among other sideshow feats. The Electric Woman is her first book. She lives in South Carolina.

Susan Sontag (1933–2004) was the author of numerous works of nonfiction, including the groundbreaking collection of essays, Against Interpretation (FSG, 1966), and of four novels, including In America (FSG, 2000), which won the National Book Award.