Behçet’s, like many autoimmune diseases, is named after the doctor who first observed and classified it. Hulusi Behçet, a Turkish dermatologist, observed symptoms in a man from 1924 to 1925. Originally suspected to have syphilis or tuberculosis, the man completely lost his vision after several iridectomies to address his ocular inflammation. In 1930, Behçet saw a female patient with similar ocular irritation and with oral and genital ulcers; through biopsies, he ruled out syphilis, tuberculosis, and mycosis. In 1936, another, male patient showed the same symptoms, along with folliculitis, fevers in the evening, and abdominal pain. Behçet decided that these patients were sufficient in number for him to describe a new disease of inflamed blood vessels, and he published his findings. The disease remains rare in the United States and Europe but is endemic in East and Central Asia. My second rheumatologist, who asked if I was Turkish—I’m not—told me that someone in my family “might be lying about their ancestry.”

Diagnosis of Behçet’s is based on symptoms, as there is no test that conclusively detects the disease. Patients might live without diagnosis for many years because all their tests come back normal. When all your tests are normal, the verdict is usually that there is nothing wrong with you. With Behçet’s, it is much easier to prove that there is nothing wrong with you than that there is something wrong with you. You will see a neurologist who will not detect a stroke or find a brain lesion, a gastroenterologist who will not detect Crohn’s or IBS, a gynecologist who will not find any STDs, and so on. Yet, when all the symptoms are considered together, the range of possible causes narrows considerably. With Behçet’s, we do not know the ultimate “cause” of the autoimmunity that impacts many bodily systems.

It is easier to research hysteria than Behçet’s disease. The Los Angeles Public Library, where I discovered Augustine’s photographs, houses only one book on my illness, published in 1997. The title assures me I am “not alone.” A section on “preventive measures” in another Behçet’s medical textbook suggests, “plenty of rest, maintain daily routine, reduce stress.”

After years of her symptoms being written off as hysteria, Alice James was diagnosed with late-stage breast cancer in 1891. In her diary, she cuts to the heart of the self-understanding offered by the diagnosis:

Ever since I have been ill, I have longed and longed for some palpable disease, no matter how conventionally dreadful a label it might have, but I was always driven back to stagger alone under the monstrous mass of subjective sensations, which that sympathetic being “the medical man” had no higher inspiration than to assure me I was personally responsible for, washing his hands of me with a graceful complacency under my very nose. Dr. Torry was the only man who ever treated me like a rational being, who did not assume, because I was victim to many pains, that I was, of necessity, an arrested mental development too.

James suffered for most of her life, but it took cancer for her symptoms to be treated as real. The epidemic of autoimmune disease—chronic Lyme disease; myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS; fibromyalgia; long Covid-19; and other poorly understood immune and nervous system disorders—resides along a more complicated spectrum from belief to cultural marginalization. I do, in some sense, feel lucky to have been diagnosed with a condition with biomarkers and observable physical symptoms—as opposed to a less visible condition that would have been received with even greater medical skepticism or would continue to be treated as an expression of underlying mental illness. Nevertheless, it is difficult to view diagnosis as a “gift” when my illness keeps me from living normally, speaking normally, eating normally, sleeping normally, moving normally, writing normally. Diagnosis has changed nothing about my bodily situation except what I am told I must endure in order to account for it. Because there are no drugs developed specifically for Behçet’s patients, I am assigned medications intended to address gout and psoriasis. When I have a flare, I suppress it with steroids. Muscle relaxers and antiepileptic drugs help me sleep. I implore a rheumatologist to allow me to try something, anything but the immune suppressants that make me even more susceptible to infection, inviting in never-ending flu viruses and chronic urinary tract infections. A new drug drastically improves my oral ulcers (one of my most frequent symptoms), but destroys my hard-earned relationship with food: “Flavors” hurt worse than ever before. The smell of eggs in the morning makes me vomit.

A synthetic opiate helped my pain considerably but ushered in additional brain fog, alarming my pharmacist, who had been filling these same prescriptions for many years. She cited her concern that I’d been prescribed an “evil triad” of drugs, all ripe for addiction (I was given Tramadol, the muscle relaxer, and a low dose of Xanax, a prescription left over from the earlier days of my illness, when what I had was thought to be nothing but anxiety).

You’re too young for all this, she told me, and refused to fill the prescriptions, even after my rheumatologist explained that I suffered from a rare disease that warranted them. (I know women whose prescriptions for miscarriage induction were refused by pharmacists, and trans people who were denied their hormones—presumably both due to religious moral objection, which, outrageously, is legal in the United States today—but I had no idea that pharmacists in California could override a doctor’s orders and refuse to fill a prescription based on their own professional opinion of how a disease should be treated.) Now I fill my prescriptions at different pharmacies—a behavior associated with risky drug use. Even when a patient is “lucky” enough to have a condition with a “legitimate” diagnosis and has a job or resources that allow access to a medical specialist to advise treatment, there are endless opportunities for someone not living in their body to know better, to deny care, to make things more difficult, to tell the patient what they ought to do instead. All this because I learned the name of my disease.

In her memoir on her treatment for breast cancer, Anne Boyer writes, “Diagnosis has diminished my ability to tell the difference between good and empty ideology. Everything I am advised to do in response to the cancer seems, at first, like a symptom of a world that is sick itself.”

Boyer alerts us to the dizzying impossibility not only of navigating what we “must” do to account for our illness, but also of the project of making literature about illness. So many accounts begin with a lament that there are no good books written on illness, that the experience of illness is resistant to or destructive of narrative. Virginia Woolf wondered why illness was never established as a serious project in literature; why the sick were, by default, outsiders who needed “a new language, more primitive, more sensual, more obscene.” Readers, she suspected, might complain that illness “lacked plot.” (I will not get better; nor am I likely to die anytime soon. My sense of possibility for my life diminishes with time lived.) Even in her essay on illness, Woolf only hints at the ailments that plagued her throughout her life, asserting that, in the matter of disease, “we go alone, and like it better so. Always to have sympathy . . . would be intolerable.” Though she potently explores states of illness in her fiction—Rachel’s delirious, raging fever in The Voyage Out; Rhoda’s madness in The Waves; and Septimus’s suicidal mania in Mrs. Dalloway—when she describes pain specifically her own, language does appear to have run dry. A biographer notes the pause Woolf’s illness created in her work. Leonard was the documentarian of Virginia’s illness.

Ever since American essayist Elaine Scarry asserted in 1985 that pain is unshareable and destroys language, inexpressibility has dominated the discourse to an even greater extent. Why bother, then? Why try to describe something that evades description, destroys language? Boyer rages against this, too: “Suppose for a moment the claims about pain’s ineffability are historically specific and ideological, that pain is widely declared inarticulate for the reason that we are not supposed to share a language for how we really feel.” Responding to Hannah Arendt’s description of pain in The Human Condition as “the most private and least communicable” of all experience, Boyer continues:

Contrast this philosophical truism about pain’s lack of communicability with your own experience of witnessing another living creature in pain. The howls, cries, screams, shrieks, and whimpers of another in pain are unequivocal . . . The look of a face in pain—even a nonhuman face—cannot be mistaken for a look of contentment . . . Pain, indeed, is a condition that creates excessive appearance. Pain is a fluorescent feeling. That pain is incommunicable is a lie in the face of the near-constant, trans-species, and universal communicability of pain. So, the question, finally, is not whether pain has a voice or appearance: the question is whether those people who insist that it does not are interested in what pain has to say, and whose bodies are doing the talking.

Boyer exposes the exculpatory ableism behind characterizations of pain as indescribable rather than unpalatable or burdensome to apprehend. When pain is unspeakable, it remains invisible. The excessive appearance of pain invites a return to examining the historically specific—the cries and exclamations of the hysterics were certainly thought to be expressions of pain, though from what, exactly, was unclear—to say nothing of the rhetorical difficulty of expressing the severity of chronic pain. One can only howl, cry, scream, shriek, or whimper for so long.

Try, if you can, to imagine the worst pain you have ever functioned through. That is to say, not the kind of acute pain that requires immediate attention, that which would have you taken in an ambulance to the emergency room, but the worst pain you’ve endured through, say, a normal day of work. A migraine, perhaps. How much time could you endure this pain? A week? A month? A year? Assuming you might experience a wave of relief before the return of this pain, ask yourself how long you could go between waves of relief before you started to question carrying on. My literary project of writing about pain is figuring out how to write a perpetual scream—that is, how to survive my life. Do I want to know, as Audre Lorde wrote of her motivation for finishing The Cancer Journals, that “the pain [will] not be wasted”? Or do I fear that writing about illness will soon be impossible? Hélène Cixous said in a published interview, “But I think the only thing that could paralyze one’s writing is a fettering, an arrest of the subject inside themselves. It can happen when one’s life force is affected. And I tell myself very humbly that illness, true illness, the body’s illness, which introduces a hostile and unfathomable stranger, can steal, strangle the live force of writing.”

Daudet wrote that “pain is always new to the sufferer, but loses its originality for those around him.” Another worthy literary project: to convey the perpetual newness of chronic pain.

The story of my illness doesn’t exist. There are great spaces in which I can grasp at sign or origin, tracing the decline in ability about which I’ve already written, but I cannot say with certainty which parts of me have been or will be lost, what kind of knowing is available to me now. Investigations yield a book about being upset with the world, a book that is in itself upsetting, but so is what we ask an illness narrative to contain: the uncomfortable dance between the needy and the needed, the weight of a precarious life, the cries of ill embodiment, and the utter ordinariness of all these things that come for each of us eventually. An illness narrative must be sprung from a debt of vitality and love but must also offer vengeance against that which diminishes life.

What diagnosis does provide is discipline and practice. I watch myself constantly for signs of disease, signs that the body is in the midst of a flare and must be reined in with steroids or other immune-suppressing drugs.

Let’s try again to tell the story: I am sick, possibly have always been sick, and now my sickness has a name. What should I do differently? For a newly diagnosed person with internet access, the suggested remedies are dizzying, endless, and offer little hope: Avoid caffeine. No alcohol or recreational drugs, ever. Expensive air purifiers I cannot afford might help with respiratory symptoms and rashes. I should use all organic, fragrance-free products in the home, and live in a home built before or after various years when toxin regulations changed. I should live far from cell phone towers. On top of my medications to manage pain and suppress immune response, I should take between ten and twenty supplements each day and chart how my body responds to each. I should adjust my expectations for myself, for my life: read only that which is short and succinct, comprehended through brain fog, spend nights in, surround myself only with those who understand the gravity of my illness, and take other, similar precautions. I should have access to resources, doctors, and services that would be possible only under fully automated luxury communism. Insurmountable.

I have come to recognize the sense of fatalism this engenders as emblematic of the particular tone of the life spent sick. Suddenly, you can’t smile or laugh or find joy or hope in anything. To a healthy person, it might look like depression.