Recently, I edited a cluster of essays on the sociological, philosophical, literary, and personal interpretations of pain. In her essay, philosopher Jennifer Corns points out that pain is poorly correlated with pathology, and the subjective nature of patients’ reports of pain complicates the treatment of pain alone: “As definitive of a medical condition, for use in clinical practice, a purely subjective definition is extraordinary. Imagine our surprise if the only accepted valid marker for any other medical condition, e.g., diabetes or cancer, was the subjective report. Imagine the absurdity of suggesting that the gold standard for diagnosing any other medical condition were patients’ reports that they had it, or that the patient report was the only valid indicator of the condition.” Corns’s conclusion is that pain ought not be considered a treatment target and should, instead, be used as a jumping-off point for doctors to consider before investigating the underlying cause.

The assertion doesn’t seem that radical, unless you have ever attempted to obtain treatment for, or investigate the underlying cause of, chronic pain—a long, expensive, usually fruitless process. I had many Behçet’s symptoms for more than a decade before receiving a diagnosis. The American Autoimmune Related Diseases Association (AARDA) estimates that the average patient spends three years (and consults four doctors) before receiving an accurate diagnosis, and that some fifty million Americans have an autoimmune disease. Women experiencing chronic pain are more likely to be diagnosed with a mental disorder and prescribed psychotropic medication than they are to have their existing pain treated. Autoimmunity is an epidemic. Conditions without biomarkers or diagnostic tests, like fibromyalgia or myalgic encephalomyelitis (chronic fatigue syndrome), are further stigmatized and poorly understood. Most people haven’t heard of my disease, but at least most doctors believe it’s real. Even if I had never been diagnosed, I would still have the same symptoms. Idiopathic syndromes and conditions (that is, diseases of uncertain origin) often have testable abnormalities even when an organic cause cannot be found. That my abnormalities were not discovered despite a decade of concrete physical symptoms says less about what was going on with my body than it does about my not knowing which tests to ask for or when they needed to be conducted in order to provide useful results.

When I consider the immense difficulty of keeping myself alive through chronic illness—suffering through a decade of diagnostics, enduring miserable cycles of treatments, going into medical debt, working several jobs in order to maintain health insurance and be able to pay for it, and being subjected to everyday medical bureaucracy—I am overwhelmed by how much worse these multilayered cruelties are for patients who do not have the benefit of presenting as I do. My presentation to the medical gaze is mitigated by my whiteness. I am able to “pass” as healthy in everyday life, and the disease I was eventually diagnosed with is generally considered to be biological—which is to say, devoid of stigma or blame. All things considered, I should have had an easier time of things than many—particularly people of color, who are routinely undertreated and insufficiently anesthetized. While the concern of pharmacists and doctors about the addictive qualities of opiates are warranted, I wish that the sheer magnitude of the epidemic of chronic pain from all its possible sources warranted their similar concern.

Assertions that we should not consider ostensibly sourceless pain to be a worthy focus of treatment leads to an overemphasis of biology’s role in legitimizing illness. It’s the same kind of assumption that Charcot initially made—that all symptoms would eventually be traced back to some sort of biomarker. Sometimes, the assumption is correct: In his 1893 obituary for Charcot, Freud explained that the neurologist had employed a servant with a tremor disorder, despite how “in the course of the years she cost him a small fortune in dishes and plates,” because he wanted to observe the anatomical basis for the tremor after her death. “When at last she died, he was able to demonstrate from her case that paralysie choréiforme was the clinical expression of multiple cerebro-spinal sclerosis.” Charcot also successfully decoded the defining features of both multiple sclerosis and tabes dorsalis (the corrupted nerve function later known to be caused by syphilis). Other times, evidence of the biological nature of a condition is emphasized with the virtuous intention of getting suffering people treatment—as with Charcot’s advocacy for the traumatized industrial workers. While the impetus to present conditions without observable organic cause or biomarkers as biological is often motivated by the desire to legitimize patients’ real suffering, it also reinforces the problematic thinking that nonbiologic illness is somehow unreal, illegitimate, or the result of a patient’s laziness, lack of willpower, or choices.

We may one day know of a biologic cause for autoimmunity or other poorly understood conditions too easily relegated to the psychological, like myalgic encephalomyelitis or fibromyalgia. Nevertheless, current patients should be able to receive treatment to alleviate their systems without having to wait for biological vindication. The stakes are high: when conditions without known biomarkers present as culturally literate (that is, easily relegated to the realm of metaphor), this not only works against medical belief, but also informs how those conditions are treated. Ill Feelings, a striking memoir by Alice Hattrick about chronic fatigue syndrome (ME/CFS), one of the physically unexplained conditions often juxtaposed with hysteria, charts this phenomenon: “Medical diagnoses reflect societal ideas of what causes ill feelings, which is to say that, as a ‘physically unexplained’ syndrome, ME/CFS came to be considered, in the words of Simon Wessely, professor of psychological medicine at King’s College, London, ‘not simply an illness, but a cultural phenomenon and metaphor for our times.’” Wessely, who has influenced UK public health guidelines for ME/CFS and disability benefit revision, has pushed for a treatment program “focused on altering patients’ belief that ‘physical symptoms always imply tissue damage,’ otherwise known as ‘catastrophizing,’ symptom focusing or ‘bodywatching,’ and ‘behavioral factors such as persistent avoidance of activities associated with an increase in symptoms.’” In other words, treatment consists of trying to convince patients that their symptoms do not reveal anything about the physical reality of their bodies and instructing them to push through activities they understand to worsen their symptoms. If a patient’s condition is chronic, and they remain unable to work—that is, to cure themselves through work—it can be read as their choice to resist treatment, to indulge their sick personality. This kind of contemporary account does not even dignify the sufferer with a label like the one Janet used for hysteria, a “malady through representation,” with symptoms announcing what otherwise cannot be represented.

What people call the sick role is actually a result of the repeated blows of disbelief and abstraction patients face at every juncture in the diagnostic and treatment processes. No one experiences their own debilitating illness as metaphor, a problem of belief.

This is not to mention the myriad conditions that use the patient’s subjective report as the only diagnostic measure for prescribing medication—like depression. SSRIs are routinely prescribed to people without the need for a specific diagnosis, and because depression treatment has capitalized on an unproven biological label, relegating ambiguously ill or autoimmune patients to psychiatric treatment is easier than ever. I’ve lost count of how many times—before, during, and even after my diagnosis of Behçet’s—doctors suggested SSRIs to me, even while noting how “composed” I managed to be through all this. Before being diagnosed, I suffered exactly as I do now. I had the same symptoms. When I consulted neurologists for fainting spells, symptoms I now understand to have been caused by neuro-Behçet’s were attributed to unstated feelings, depression, and anxiety. I was told that I did not even need to be aware that I was experiencing these feelings in order to be diagnosed with their corresponding disorders or for doctors to determine that they were what caused me to lose consciousness—all while the physical impact of my disease ran unchecked. It is unfortunate that the lasting impact of Freud’s work in hysteria has been to predispose medical doctors to attribute mental states to patients that we often do not possess.

After my Behçet’s diagnosis, my first rheumatologist tried to convince me again to try SSRIs; it was inconceivable to him that this painful and exhausting disease would make me feel anything but despondence. He wasn’t wrong: despondence is often all I can feel. I have had major depressive episodes in concert with poor health my entire life. Those feelings are a response to my circumstances, not the toxic result of my own thoughts (as cognitive behavioral therapy, or CBT, posits) or a brain disease. It is conceivable that antidepressants would have made me feel better about the hopelessness of my bodily situation. Maybe they make many people with or without specific diagnoses feel better, but in none of those cases is a disease with objective, biological, data-specific qualities a prerequisite for medication. So, why is the treatment of physical pain continually up for debate?

Neuroscientist Anne Harrington provides some illuminating context. In Mind Fixers: Psychiatry’s Troubled Search for the Biology of Mental Illness, she charts the distaste for psychoanalysis in favor of CBT and biological medical models as tied to a mythical 1980s “biological revolution” that didn’t have as much to do with medical discovery as with a shift in public thought. Psychiatry presumes our brains to be already diseased; CBT presumes our thoughts to be already diseased. While psychoanalysis emerged in reaction to a biological focus in psychiatry, it also left “a generation of scapegoated parents” supposedly responsible for the mental unwellness of their children. To these parents, a return to a biological approach seemed like “a road to redemption,” though Harrington argues that it also “overreached, overpromised, overdiagnosed, overmedicated” patients and “compromised” the field’s principles.

If medicine, treatment for depression, addiction, and psychotherapy understood suffering to be inherently legitimate and worthy of specific and effective treatment, instead of acquiescing to an unproven biological label in order to get patients access to a less specific and possibly incorrect treatment, diagnostics might be more specific and useful, and patients could spend less time trying to convince their practitioners that our experiences don’t line up with their classifications. Harrington’s observation that biological psychiatric theories have a way of affixing themselves to an era’s problematic beliefs about race or sex, while professing to be more humane than whatever came before, is particularly apt when considering Charcot’s effort to destigmatize hysteria by classifying it as biological. (Though this goes both ways, as some of medicine’s most horrific, torturous practices have been enacted in the search for a probable cause for biological distinctions between races.)

I do not cite Harrington’s argument to suggest that mental disorders should not be treated as conditions—though she is particularly articulate in her debunking of the “chemical imbalance” and “bad wiring” narratives that are so ingrained in our culture they seem to be supported by considerably more science than they actually are—but to make the point that diagnosing an illness as biological or psychosomatic is often a way of obscuring the nature of the illness to the patient and offloading responsibility onto them, instead of making our society more livable for all kinds of sick and suffering people. A fainting girl can be told it’s all in her head and sent to a psychiatrist, who will be unable to address the symptom, just as the depressed patient can be told they are unhappy due to a chemical imbalance and given medication in lieu of treatment that addresses, or at least considers, their personal circumstances or larger structural forces. Western medicine remains devastatingly attached to the notion of blame, to the extent that it is difficult even to critique the medical model without resorting to it.

To be depressed under late capitalism, as a result of physical illness or alienation, seems to me a rational response to one’s conditions. However, when it prevents one from producing value through labor, it is considered an illness. Because of the way we have organized our society, the person who seeks treatment through submission to the medical gaze is a consumer; health is a kind of property, a sort of capital that can be used to generate more capital. In Capitalist Realism, Mark Fisher warns that “considering mental illness an individual chemico-biological problem has enormous benefits for capitalism”; the same can be said for the epidemic of autoimmunity. We cannot yet know the extent to which autoimmunity is a result of unchecked capitalist production and its runoff—Behçet’s is correlated with, but not in requirement of, a gene and seems to be more common along Silk Road trade routes—but if we consider autoimmunity to be the conclusion of a medical and pharmaceutical model, recognized and treated according to a protocol, those who have not yet been diagnosed are simply bodies not yet capitalized by the pharma-consumer model. Without the medical-diagnostic industrial complex—the only real means of accessing potentially effective care in the United States—these diseases and the people who suffer from them do not exist. Bodies that fail under the conditions of capitalism get pathologized. The project of seeking diagnosis is an attempt at rectifying and recognizing pain that has often long been received with indifference. It can be eternally futile or eternally “successful” in that you never stop accruing diagnoses.

In order to monitor the inflammatory effects of my disease and my many medications, I have blood work done frequently. Many years into my treatment for Behçet’s, my blood tests showed that I also have Sjogren’s (an immune syndrome that impacts tear and saliva glands, frequently comorbid with other immune disorders), and likely also lupus. When I asked my rheumatologist if this last illness would change anything about how we were treating my Behçet’s, she said it would not. I’ve also been told I have Raynaud’s, a phenomenon of decreased blood flow to the fingers due to blood vessel spasm, but it is not clear if this is distinct from a similar manifestation of blood vessel action as a result of Behçet’s. A criterion is useful for diagnosis only if it includes as many people who have the disease as possible, excludes those who do not, and describes symptoms as they appear in a medical setting. The more subjective the symptom appears clinically, the more likely it is to overlap with other conditions (that is, extremely likely, as is the case with autoimmune disease, depression, etc.).

Eli Clare, one of the first scholars to popularize the bodymind concept (in which the body and mind are expressed as a single, integrated unit), writes that diagnosis is “a tool and a weapon shaped by particular belief systems, useful and dangerous by turns”; that he wants “to read diagnosis as a source of knowledge, sometimes trustworthy and other times suspect.” Diagnosis does not tell us much about the world, about the cruelty and indifference of medicine. It does not counteract punitive illness metaphors. It doesn’t tell someone what their pain feels like or why a week in bed is the “price” of a fun night. Diagnosis does not stop you from resorting to blame and self-recrimination when you are faced with all the things you want to do but cannot do any longer. The impact of what diagnosis indicates falls outside the scope of what is considered medical. Behçet’s is the name of a body that is not trusted, the name of a body that does not trust itself. Behçet’s is lost ability. Behçet’s is lost time. Behçet’s is disappearance. Behçet’s is experiencing moments of pleasure as future pain. Behçet’s is the inability to untangle which experience of haziness comes from illness or medication. Behçet’s is your mother saying, when you have nothing to report on the phone but suffering, that she just can’t believe that you have this. Behçet’s is a lover telling you he knows someone who cured their psoriasis through diet and that he doesn’t see why you won’t at least try the same. Behçet’s is the room spinning through a meeting that could have been an email. Behçet’s is spending months at a time with flu symptoms because your department has a policy that teachers should fail any student who does not attend 90 percent of class meetings, so students come to class sick. Behçet’s is a job making you sick but also you needing the job so you can keep your health insurance to treat Behçet’s. Behçet’s is unpaid labor. Behçet’s is the university proving, overnight, that online teaching—the kind of accommodation not previously offered as reasonable—is actually quite reasonable once able-bodied teachers are subject to risk as well. Behçet’s is the adjunctification of universities. Behçet’s is reapplying for your job each year under hiring practices that leave you afraid to present any reason for their not keeping you around. Behçet’s is telling a sick student which blood tests she should ask for—the blood tests that might have gotten you a diagnosis a decade sooner.

Behçet’s is a lifetime of student loan payments to cover the ambulance rides you took in college. Behçet’s is recognizing which students are struggling physically or are fatigued from working night shifts. Behçet’s is moving into an apartment you cannot afford when your roommate gets breast cancer in her thirties and your doctor advises against two people on the same immune suppressants living under one roof: You’ll both always be sick. Behçet’s is no CDC pandemic guidelines for the immune-compromised, even after a study of those with suppressed immune systems shows that only 17 percent had detectable antibodies after a Covid-19 vaccination. Behçet’s is the CDC finally reporting, months later, that the vaccine may not be effective in people with suppressed immune systems, who should talk to their doctors and possibly continue to quarantine indefinitely. Behçet’s is the CDC reporting that immune-suppressed people are not only more vulnerable to breakthrough infection, but also more likely to be vectors of infection for healthy people. Behçet’s is a national pandemic “health” response not once decoupled from the economy. Behçet’s is the single silver lining of the pandemic: being spared the constant contagion of unventilated classrooms full of undergraduates. Behçet’s is taking an opiate in order to complete a wellness webinar. Behçet’s is being told you might feel less fatigued by doing more. Behçet’s is explaining what a cytokine storm is. Behçet’s is saying that the idea of a “natural” treatment is nice but that your organs no longer function “naturally” and that for white patients to think of herbal and Eastern medicines as something more primitive, something they can just pick up and tune their bodies to, is rather epistemologically racist, actually. Behçet’s is friendships lost to your inability to show up, lovers lost to their missed STD tests—for which you can’t blame them, really, as you have so little to offer and don’t want them around your brokenness. Behçet’s is being able to tell only fundamentally ungracious stories. Behçet’s is falling in love and learning to allow someone around your brokenness. Behçet’s is shaving off bits of your soul. Behçet’s is telling people it’s a lot like lupus. Behçet’s is something better described as being allergic to the entire world. Behçet’s is something better described still as feeling so bad so much of the time that your real fear is that, soon, no high will pull you out of it. Behçet’s is knowing you are totally and completely fucked, that your life force will continue to fractionalize, that pleasing people or having a career must slump away if you are ever to be able to write. Behçet’s is reminding yourself, every day, even from bed, that you are one of the lucky ones.