I’m on the elliptical nearing the end of my workout at the gym when I catch the most horrifying ninety seconds I have ever seen on screen.
About the gym, I should first explain: I go regularly. For a chronically ill person whose meds consistently fail, I’m in spectacular shape—Michelle Obama biceps and everything. Even on days when I’ve pushed my body well beyond its capacity to withstand pain, construction workers wax eloquently on the tightness of my ass. The catcalling then becomes more than just a screaming-in-my-face reminder that the patriarchy is doing OK without my support, but remains as maddeningly irrelevant as ever. “Whoooh—you are doing great, honey!” the men call as I emerge from the facility. Shows what you know! I think, viciously, because I am too exhausted to yell.
The flash of satisfaction I get for besting catcallers (even if only in my mind) is too fleeting to justify an active gym membership. Nor does my beloved sauna explain the devotion—I’ve encountered too many sincere women doing yoga in it and, once, a tidy pile of human excrement. Of course my body reacts to treatment better and recovers from injury faster when my heart rate hits 140+ bpm three times a week, but even this I consider a bonus. No, I go to the gym because I can fit in some CNN time while on the weirdo cross-country ski machine and, in this way, retain an understanding of what other people think of as politics. Apparently, not everyone believes that the gendered distribution of medical funding and limitations this places on research into the causes of autoimmune disease is the most pressing issue of the day.
It’s election season 2016, so someone on the television is saying something about Donald Trump, likely the man himself. His appearance onscreen coincides with the hardest part of my workout, so I focus my energy on not vomiting while fake cross-country skiing at a steep incline despite graphic evidence that a reality television star, tax dodger, and self-proclaimed sexual assailant is about to be elected President of the United States, partially due to the exact form of media pandering I am witnessing at the moment. Even that is not the horrifying video I am about to describe.
When I can focus again, about a minute into my cooldown, a commercial I’ve never seen before is fading in from black. It’s for Opdivo, “an exciting scientific breakthrough,” a voiceover explains. The sights and sounds of the spot are unmemorable: generic nature; a healthy-looking white man performing a mildly heroic act; an elderly couple gingerly holding hands; soothing, twinkling music. Opdivo, I glean through the reverie, is part of a new class of immune-stimulating drugs that fight cancer.
What’s supposed to happen during my five-minute cooldown is that my heart rate should lower from 140+ bpm to something in the mid-90s, but—I test it—it’s only rising. Opdivo, I know, because I’ve read about its clinical trials, initiates an autoimmune reaction, so the description of the treatment as “immune stimulating” jars me. I have between four and seven autoimmune reactions occurring in my body at any given time, and “stimulating” is not how I would describe them. “Agony” comes faster to mind. Also, “debilitating,” “soul-crushing,” and “incurable.” There are interesting aspects to these diseases of course, benefits I could never have imagined in advance. Yet often, there are no words to describe them at all—sometimes because the pain is blinding, and other times because my mind is so muddled with medication I can barely conjure vocabulary. But, you know, marketing.
Drugmakers claim Opdivo coaxes the body’s natural immune response into hyperdrive, inciting it to attack cancer cells with as much abandon as my dysfunctional immune system is currently attacking the joints in my right wrist, my salivary glands, the skin on my elbows, and a healthy length of my intestines because someone snuck dairy into the fish I ordered at a restaurant last night despite the clear outline of my food restrictions while ordering. This is stimulating to me in the same way that getting punched in the nose might be stimulating. What the pharmaceutical company only hints at in the small print of this injectable is that once stimulated to attack, the autoimmune response doesn’t stop on command. It may remain stimulated even if all the cancer cells it was called on to eradicate have been destroyed. (That’s why autoimmune disorders are treated like diseases and not like add-ons at the spa.) Even if immune-stimulating drugs work on the intended target, they may provoke a system of autoimmunity that will go on to attack whatever was lying beneath, near, or beside it: your stomach lining, your blood, or your liver. Autoimmunity doesn’t care.
I am gutted. What I am watching on television is an advertisement for some of the exact fucking diseases I am trying, at that moment, to survive.
On an intellectual level, the logic holds well enough. Harnessing the autoimmune response to fight cancerous growth is theoretically sound—and just the tiniest bit clever. However, medical science has never found a reliable way to reign in the autoimmune response for those suffering its worst effects, nor for anyone else. Other concerns flare up: Opdivo is approved to treat an advanced-stage lung cancer, renal cell carcinoma (kidney cancer), and certain melanomas (skin cancers) for which chemotherapy has not proven effective, and thus presents such “immune-boosting” treatments as alternatives to chemotherapy without acknowledging chemotherapy as a first-line treatment for several manifestations of autoimmunity. Here, let me help you out of this frying pan: Opdivo may treat your cancer after chemotherapy has failed, but you may also be stuck with a new chronic illness and even more chemotherapy, in addition to the several serious side effects of taking the drug in the first place. To me, this all seems a bit counterproductive (but who am I to tell you how to get over your cancer?).
Perhaps most insulting is the expense. A full, twelve-week course of biweekly Opdivo infusion treatments can run as much as $200,000. This is about twenty-five times what I pulled in last year, a pricey consequence for my particular combination of faulty genes, years of eating preservative-laden food, the occasional course of antibiotics, a high-stress lifestyle, constant international travel, and just regular old Life in the Age of Toxins. If you really, really want an autoimmune disorder—and all the cool kids have ’em—why not try a crap diet, skipping every third night of sleep, and doing a few shots of Purell? Whole thing’ll net you less than $2000, for sure. At least until you start needing lab tests.
So there I was, at the gym, watching CNN condone and install megalomania as New World Order, when a commercial comes on, selling a disease or two that I was fighting at that moment to keep from doing more damage to my already compromised body. These are ailments I will have for the rest of my life, lit on screen by a soft, white light and accompanied by a lilting tune, and they are going for top dollar. That’s not money that will fund research into treating autoimmune disease of course, but will instead fuel the project of making autoimmunity useful in the treatment of other ailments—proliferating disorders like mine as a result. And all of this is happening before my eyes, at the gym, without a shred of acknowledgement of how difficult, hopeless, and expensive these diseases can be to live with.
When I can breathe again, my first inhale is a gasp. The next is a sob. I begin crying then in horrible jags, angry as shit, my heart rate steadily rising, standing there on that lumbering machine. I’ve seen thousands of horror films, but the commercial terrifies me more than all of them combined.
The 2014 film Creep opens with a bright-eyed, if slightly skittish, videographer arriving at a mysterious freelance assignment he picked up online. Aaron (Patrick Brice) has been offered $1,000 in exchange for a day’s footage and “discretion.” Josef (Mark Duplass), who posted the ad, clears up the mystery straightaway: “I am a cancer survivor,” he says, describing a prior successful treatment. “[U]nfortunately two months ago . . . brain tumor, size of a baseball.” Josef claims that the reappearance of his cancer means he has only two to three months to live. The video, a day-long document of his life, is intended for his unborn son.
Aided by the found-footage conceit of the film (we are watching Aaron’s video), the videographer’s anxiety, and Duplass’s over-earnestness, the viewer is led on an eye-widening excursion of tiny scares over the course of the two men’s weeks-long relationship that never seems to build to larger horror. That is, until just over halfway into the film, when it becomes clear that Josef probably isn’t sick in the way he claims to be.
Horror films reflect society’s deepest fears in absentia; that is, the presumptions underlying the safe version of the world destroyed in most horror films are often more telling than the scare tactics of whatever monster inflicts the destruction. Good horror movies exploit presumed bastions of comfort, universally held beliefs that, throughout the course of a film, we may come to understand are built on faulty or wholly false presumptions. Creep is a horror film—and quite a good one—based on the premise that cancer survivors are all of a type: they love and value life, are always truthful, and intend no harm. The inverse is also held to be true: that one does not lie about having the disease, that doing so is a violation of the highest moral order. Creep shows us someone inherently good and kind—but gullible—who deserves and receives punishment precisely because he believes the best of someone who claims to be dying of cancer.
The plotline calls to mind Susan Sontag’s 1978 thesis Illness as Metaphor, which catalogs an affliction she was suffering, albeit through a critical historical overview of disease narratives; it is not a memoir. The narratives she explores, she argues, create unhelpful metaphors, storylines patients must rail against in lieu of their actual illness-causing agents. Sontag casts disease metaphors as dangerous, energy-wasting distractions from medical treatment that do far more harm than good.
Although the essay caused medical practitioners, psychotherapists, and naturopaths the world over to throw hissy fits in the ensuing decades—the hopefulness at the center of many disease metaphors does seem to aid healing—she did have a point. Sontag’s ailment/muse, companion/foe was a disease around which many narratives have been constructed. In fact, so many that there has come to be a standard cancer narrative (beloved figure grows mysteriously ill, fights vainly, yet perishes, and the rest of us gain lessons about the value of life from the experience), or even standard narratives for particular forms of cancer (an unjust and cruel man is afflicted with an aggressive and untreatable cancer; an innocent child remains hopeful in chemo despite overwhelming odds). Individuals are said to be either standard or not standard cancer sufferers, just as particular diseases are thought to behave in particular ways among particular populations. A healthy vibrant athlete facing radiation therapy must be discussed in almost mystical terms, as if cancer does not regularly afflict the previously healthy; the patient being treated for lung cancer who never smoked a day in her life is thought to have been done a grave disservice. The metaphors all craft a sense of knowledge without actual knowledge: Cancer, we feel, is known. Cancer survivors are known. The manner in which we respond to cancer survivors is known. The negative medical impact of this “knowing”—a vague sort of caring, absent of curiosity—was Sontag’s subject.
Although the medical field has advanced significantly since the essay’s publication, many of Sontag’s assertions still hold true today. That we automatically react to the specter of cancer with patience, kindness, and respect is so deeply baked into our culture that responding with questions or criticism would be unthinkable. It is neither my intention, nor was it Sontag’s, to challenge an inherently humane response. But we should note that cancer comes to operate, culturally, as a safe harbor: the metaphors we still use today to describe the course of the disease—in truth, many similar-acting diseases—are reliable, somber, and predictable, however much the diseases themselves continue to defy true knowledge. This becomes tautological: when we treat dangerous elements of any kind as if we already comprehend them, we actively deny ourselves the opportunity to acquire new information about them.
The metaphors of disease can establish a culturally reinforced ignorance of its true dangers and mechanisms, Sontag argued. And this point remains true today. If you don’t believe me, try saying to the next guy who says he has a brain tumor the size of a baseball, “Prove it.” Creep’s Aaron didn’t, and I’m not even going to tell you how horribly that turned out for him.
When intellectual women become ill, they turn, invariably, to Sontag. This does not mean, apparently, that they all read her. An overview of literature referencing her work on illness reveals the most quoted passage to be the sly joke from its opening lines: “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 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.”1
It’s the one solid, original metaphor we can pull from Sontag’s groundbreaking work—by authorial design. She references the easy glitz of the image herself in the introductory paragraph of AIDS and Its Metaphors, the 1988 addition to the Picador reprint of the essay:
Saying a thing is or is like something-it-is-not is a mental operation as old as philosophy and poetry, and the spawning ground of most kinds of understanding, including scientific understanding, and expressiveness. (To acknowledge which I prefaced the polemic against metaphors of illness I wrote ten years ago with a brief, hectic flourish of metaphor, in mock exorcism of the seductiveness of metaphorical thinking.) Of course, one cannot think without metaphors. But that does not mean there aren’t some metaphors we might as well abstain from or try to retire.
Not all metaphors, she acknowledges, presaging social media-level criticism by a good twenty-five years and responding directly to her detractors in the wellness field. She also lays bare larger intentions of the piece never elucidated in the original. The essay aims, she writes, to consider the “mystifications surrounding cancer” through a review of the literature that set them in print, stopping first to outline the mythology of tuberculosis in light of the medical evidence that has since emerged to disprove most of its purported truths. She wanted, she explains, to avoid another first-person autobiographical tale of yet another triumphant cancer survivor. “A narrative, it seemed to me, would be less useful than an idea,” she writes. In support, she quotes Nietzsche: “To calm the imagination of the invalid, so that at least he should not, as hitherto, have to suffer more from thinking about his illness than from the illness itself—that, I think, would be something! It would be a great deal!”2
The desire to remove the psychosocial burden of illness from the physically ill person, Sontag explains, is “practical”:
It was my doleful observation, repeated again and again, that the metaphoric trappings that deform the experience of having cancer have very real consequences: they inhibit people from seeking treatment early enough, or from making a greater effort to get competent treatment. The metaphors and myths, I was convinced, kill.
Time has since proven a good number of her assertions correct, and many cancer treatments popular in the late 1970s were ultimately withheld, abandoned, or improved in response to the concerns raised in her book. Breast cancer treatments, for example, became more localized and less invasive, as researchers and patients alike began demanding more accurate, individualized responses to the disease. As medicine progressed, it became clear that there was not, in fact, a “cancerous personality,” a theory popular when Sontag was diagnosed; the evil were not stricken with the disease because they had erred (and would therefore succumb to it) and the good were not immune (and would therefore be cured if they mistakenly fell ill). The metaphors and myths surrounding cancer, without a doubt, caused a great many deaths that could easily have been prevented, as scientific breakthroughs fostered a more accurate understanding of the causes and treatments of various forms of cancer. This remains consistent with Sontag’s authorial intention. The focus of the patient, the healthcare team, and those who seek to describe the diseases in question, she argues in Illness as Metaphor, should stay on scientific fact and medical research. Period.
Without going full-bore, counter-intuitive Camille Paglia on you, I’d like to suggest that, today, those with a more proliferative disease than even cancer may be suffering from the exact opposite dilemma. With autoimmunity, it is a total lack of metaphors and mythology surrounding these diseases that kills. Many may even be dying in service to the cancer research that Sontag so rightly championed.
A description of the popular milieu surrounding autoimmunity is easy enough—a brief overview of contemporary literature is extremely brief, indeed. Minus self-help books and blogs—of which, in truth, there are a great many—we’re left with surprisingly few references, whether literary, journalistic, or popular, for a set of disorders also considered epidemic.
Even Laurie Edwards’s In the Kingdom of the Sick (Bloomsbury), a 2013 cultural history of chronic ailments named for Sontag’s joke about the seduction of illness metaphors, strangely offers little to no deep thinking on the subject; neither do characters with unnamed diseases littered across sci-fi narratives that seem, often, to reflect autoimmunity. Donna Jackson Nakazawa’s 2008 nonfiction book, The Autoimmune Epidemic (Touchstone), pays more engaged attention to the topic (occasionally too much for me—I cried heartily out of naked fear that each horrendous disease described would be the next to appear on my hospital chart) and is an excellent read of case studies and medical theory surrounding autoimmune conditions. For a time, it fostered in the press a mild interest in the rise of autoimmunity. This died out quickly—faster even than folks perish of “Bellini’s lymphocemia” in season one of Fox’s sci-fi series Fringe (2008–2013). The fictional autoimmune disease is inflamed by anger, and causes peoples’ heads to explode.
If you want metaphors for autoimmunity, in truth, you will find them most frequently on television, particularly on the Fox series House (2004–2012), where autoimmune disorders are often first assumed and then rejected as diagnoses by the eponymous Dr. House. Lupus, which is notoriously difficult to diagnose, even became something of a running gag on the program. “It’s never lupus,” the pill-popping sociopath mutters more than once to his medical team. The phrase became the program’s unofficial tagline, then a meme, then a joke that spread throughout pop culture. As Sontag predicted, such jokes have real-world effects. This one became an ever-ready cultural dismissive for a disease that predominantly affects low-income women and people of color—groups that often have trouble accessing healthcare services and even more trouble being taken seriously within the medical system.
“What’s Graves’ disease?” Kate Micucci asks a weed dealer in the first (and only) season of IFC’s 2014 women-led comedy, Garfunkel and Oates.
“Oh, that’s what you get if you’re a grave robber and you go in and you take the body for some sort of nefarious, scientific purpose, and then you find out that you have some sort of fungal infection on your finger,” he replies. The joke, of course, hinges on the fact that Graves’ is a lesser-known autoimmune disease that causes anxiety-producing hyperthyroidism, the effects of which are suppressible by marijuana-smoking.
Autoimmune diseases are played for only slightly fewer laughs in The X-Files, another Fox program that ran from 1993 to 2002. In an episode toward the end of the second season, a string of characters are diagnosed with Creutzfeldt-Jakob disease, a degenerative neurological disorder thought to be related to autoimmunity. In this case, the disease resulted from the consumption of chickens from a commercial processing plant where feed consisted of human sufferers of the disease who were murdered to cover up the . . . well, it gets a little confusing. The episode ends with a bizarre, colonialist depiction of tribal cannibalism in New Guinea, scary masks and all, lending autoimmunity an exoticized provenance that has no basis in reality.
In the sixth season of Showtime’s Nurse Jackie (2009–2015), Edie Falco’s titular character treats an ER patient with only a tote bag full of medications for ID. The woman turns out to have a host of autoimmune diseases, and Jackie—habitually drug-addled herself—turns solemn. The patient’s sole problem turns out to be medical incompetence: she’s been prescribed multiple prescriptions for multiple diagnoses with no centralized oversight. “Not one of her doctors came down,” a nurse explains to Jackie. “I’m on hold with the rheumatologist right now.”
The nursing staff tricks the physicians into a group consultation by telling each respectively that their mothers have just been admitted to the ER—unethical, perhaps, but based on my experience, a believable depiction of what it might take to get various specialists together to address a single patient’s panoply of autoimmune conditions. The episode ends before any incisive medical advice is handed out, but the characterization of autoimmunity as deadly serious but complex beyond the abilities of modern medicine is clear.
BBC’s Orphan Black provides the most recent, and currently most watched, depiction of autoimmune disease in popular culture. An untold number of clones—some kind of corpo-government invention—are programmed with an endometriosis-like disorder to prevent pregnancy that, unfortunately, appears to spread and turn malevolent in the body of each clone. The search for the cure is a journey of self-discovery for each of the identical victims, of course, as well as a cloak-and-dagger intrigue replete with military, scientific, and private business interests all competing to conceal, nab, or supply knowledge about the clones’ diseases, genesis, and creators. That disease was programmed into the clones’ design seems a fitting acknowledgement of real-world conspiracy theories about autoimmunity; few medical, scientific, or holistic explanations make as much sense. (Some suggest, in fact, that autoimmune-adjacent Lyme disease is a government invention that leaked from a military water source, while the infamously contentious Agent Orange is, in fact, autoimmune in nature.) But that the diseases on Orphan Black are mysterious, suddenly triggered, serve the functional purpose of controlling a secret government invention, and appear (at least so far in the series) to be chronic does little to dispel the wider myth of autoimmunity as unfathomable, incurable, and even impossible.
In sum, popular representations of autoimmunity are almost wholly consigned to sci-fi and comedy television—even though they’ve been acknowledged by the medical establishment now for decades. These are diseases of the future, the metaphors run. They are incomprehensible and ridiculous. And that’s where the metaphors stop.
The impossibility of knowing autoimmunity to the same degree that we know cancer, it turns out, is a metaphor with a history. German physician and scientist Paul Ehrlich set the theory in motion in the early 1900s with his research into the immune system.
Ehrlich’s scientific distinctions are many: he developed tissue-staining methods that allowed labs to distinguish between types of blood cells; he developed the first effective medicine to treat syphilis; he even initiated and named the concept of chemotherapy. In 1908, his work on immunology earned him a Nobel Prize. His immunological studies, however, led him to some fascinating conclusions. One, still surprisingly pernicious today, was that autoimmune disease could not possibly exist.
Ehrlich’s 1898 attempts to immunize animals with the blood of other animals from their own species, and then with their own blood, failed to produce autoantibodies; that is, the blood did not appear to be rejected even when removed from and reintroduced into the body. “This led Ehrlich to postulate the existence of what he termed horror autotoxicus,” Arthur Silverstein notes in the journal Nature Immunology, “the unwillingness of the organism to endanger itself by the formation of toxic autoantibodies.”3
Ehrlich’s precise judgment of the concept of autoimmunity, noted by Silverstein, was that it was “dysteleologic in the highest degree”4—fully purposeless, without function. (I recognize the validity of this argument, although the makers of Opdivo would certainly disagree.) When called on in later years to respond to emerging evidence that, however purposeless, autoimmunity did in fact exist, Ehrlich dug in his heels. Horror autotoxicus (literally, the horror of self-toxicity), he explained, did not prevent antibodies from forming against the self—the evidence he was given to examine—it merely kept them “from exerting any destructive action,” according to Silverstein, underscoring Ehrlich’s own vague explanation, “by certain contrivances.” Thus, Erlich dispelled the possibility of autoimmunity, at least in his mind, for good. Others paid note, too.
“Ehrlich’s absolute dictum that autoimmune disease cannot occur would resound throughout the decades and prevent full acceptance of a growing reality,” Silverstein contends. As recently as 1954, despite scientific reports pointing to the emergence of at least six autoimmune disorders, horror autotoxicus was still considered a law, with holdings as absolute as the law of thermodynamics or those set out by Newton to describe motion. “The ruling immunochemical paradigm,” is how Silverstein more democratically refers to Ehrlich’s now disproven theory, noting that the possibility of autoimmune disease was still an open question in the 1960s and just starting to be addressed as a medical reality in the 1970s.
How could an inaccurate (and frankly, wholly unprovable) theory hold such sway for so long? In short, the immune system was thought to contain within it a range of emotional responses—aggression, clearly, as well as acceptance—and one of them was “horror.” The sheer terror the body would naturally feel at the possibility of self-attack was presented as the medical reason autoimmunity was impossible. The logic of this must have seemed, at the time, unassailable. There is no biological reason for a human body to self-destruct—it is, truly, dysteleologic in the highest degree. I can barely imagine it, and my inability to imagine it should by all rights be mirrored in my body’s inability to perform it. Except that my right wrist and left foot are swollen and achy today—bodily evidence that Ehrlich was wrong.
The idea of the immune system turning on its host is terrifying. It is one thing if the guards fall asleep on the job, but once your knights start invading your castle, what’s a king to do? Call a meeting to remind them of their duties? Throw the knights an appreciation party? The king would be lanced immediately. It is the combination of the terror of the idea, I think, and the easy accessibility of the medical theory to justify it, that mounting evidence of the existence of the autoimmune response throughout the twentieth century was ignored or considered aberrant to the “truth” of horror autotoxicus.
Autoimmunity went unacknowledged for generations not because it was too horrible to consider, but because it was assumed to be so thoroughly horrible that the body couldn’t possibly allow it. We believed our biggest fears were impossible, and there’s something quite charming in that. As much as I’m aware that this is why no drugs have been developed that can keep my hand from hurting as I type, something deeply trusting lies at the base of this falsehood. It’s only too bad how much damage the falsehood continues to cause.
The inexplicable and rampant growth of cells might be considered fascinating, if you have never seen the effects of it in yourself or others. Certainly, the cultural response is fascinating. We talk about beating cancer, run a Race for the Cure, buy pink to fund cancer research. “Fuck cancer!,” we say, and we mean it. These are narratives that we are familiar with and that we invest in, financially and emotionally. Color-coded ribbons and sympathetic head-shaving rituals are among the ways we indicate to one another: here is a thing that must be endured, and here is the manner in which I am connected to it. The metaphors may not always be apt, or terribly effective, but they act as scaffolding for further exchange. Even Sontag eventually conceded that such metaphors acted as “the spawning ground of most kinds of understanding.”
Unlike the community that rallies for the eradication of cancer, prescription pills for the treatment of cancer are quite toxic; if you touch them, you must wash your hands immediately afterwards. Because ingesting a drug without touching it can look ridiculous, I sometimes explain to people when I toss back a few pills directly from the bottle, “These are chemo meds.” I say this to avoid looking like a crotchety pill-popping sitcom character knock-off, but my statement has no calming effect. Immediately, whomever I am with will look concerned, or sad, or alarmed. Until I add, “Oh, I don’t have cancer,” and then they look relieved and everything proceeds as if nothing unusual occurred. As if there was nothing wrong, as if there was nothing else to know.
Autoimmune disorders are also fascinating diseases; they are less about the quantity of cells than their behavior. They do not create inexplicable growths—they incite cells to attack and to attack any available cells they can find. This is what makes autoimmunity the perfect response to cancer: an autoimmune system will attack until there is nothing left, and potentially well beyond that. Autoimmunity offers unrelenting but often invisible violence: the sick don’t usually appear ill, diseases may lie dormant for years before emerging through symptoms, and tests are only administered once patients complain—or rather, once their complaints are taken seriously by presiding medical staff, which can sometimes take years.
Little is known, thanks in large part to Paul Ehrlich, about why these diseases start, how they function, or what triggers them. What is known is that they cause disability, dysfunction, and death, by which I do not mean that they are all fatal—in fact, the number one cause of death of those who’ve received a diagnosis of autoimmune disease is suicide.
The most significant source of frustration for the afflicted is how few effective treatments have been developed to respond to autoimmune conditions, which is why most of the drugs prescribed have other primary uses. One I took for awhile prevents malaria; another, that I do not take, is just gold, injected into the muscles. (I don’t know how this came to be a treatment for autoimmunity, but because I like ridiculous things and was willing to try anything, I requested it. My doctor unfortunately refused to administer it to me, saying it sounded, “Stupid, like it came out of a comic book.”) No one knows why most of the frontline autoimmune drugs work, in fact, because no one fully understands why the immune system goes haywire in the first place. The chemo meds, for example, are simply thought to throw the body into such extreme distress that it stops attacking itself. If you need these drugs, you quickly get the sense that you should feel lucky anyone bothered to find any treatments that help at all.
The National Institutes of Health (NIH) funded autoimmune disease research at a measly $850 million in 2016, a drop from 2012’s $867 million, since which time diagnoses of individual autoimmune diseases rose between 2.5 percent and 6 percent per year, depending on the condition. Today, around fifty million Americans suffer autoimmunity, according to the American Autoimmune-Related Diseases Association, so an increase of 2.5 percent would mean 1.25 million new cases; an increase of 6 percent would indicate three million more cases.
Far more funding, of course, goes to the study of effective cancer treatments. In 2016, the NIH dedicated $6.3 billion to cancer research, representing a healthy increase over 2012’s $5.6 billion. However, new cancer diagnoses didn’t increase much during that time—there were 1.6 million new cases in 2012, compared to 1.7 million new cases in 2016, according to the American Cancer Society. An increase of less than 1 percent.
Note, please, that there’s not even enough funding to effectively track the number of new diagnoses of autoimmune disease on an annual basis. Yet even the most conservative estimates suggest that one in twelve people—one in nine women—will develop autoimmunity over the course of their lives. Only one in fourteen, according to the National Center for Health Statistics, will develop cancer, research for which was funded last year at nearly 7.5 times the funding for autoimmune diseases.
In this way, understudied diseases that afflict some fifty million Americans are researched, although primarily for their potential to be used by the makers of such drugs as Opdivo to treat the cancers of some twenty million Americans.5 Sontag’s initial concerns clearly still hold true. The metaphors we use to describe illness limit our imaginations—not to mention the political force and funding pools required to develop effective response to rapidly spreading illnesses. But the mythology of cancer she explored was rich and elaborate—even if ultimately limiting—compared to an autoimmune disease, about which little to nothing is known.
Cancer is known, while autoimmunity remains unknowable. Yet the unknowable has use, it seems, when put to service of the known.
Part of this essay was included in a 2015 performance at the University of Illinois at Chicago’s Gallery 400 called “The Queer Crip Narrative.”