When I can’t get my thoughts down, I look at the photographs of Augustine. In one, she is mischievous, giving Charcot a sidelong glance, skeptical, and I wonder if she so obediently offered herself up for medical policing not only to create a beautiful final photograph or contribute knowledge about the nature of her illness, but also to experience the time spent posing, the moment of self-loss, respite, oblivion. Are the images a quickened path to the climaxes of her life? Does she have a clear image of herself outside Charcot’s creation?

Augustine continues to come to me; I continue to transcribe her; we are united in having been rendered in a language that cannot account for us. It is too easy to speculate about her motivations. It is entirely possible that she found the life available to her before the Salpêtrière banal, that the possibilities of a life in the confines and language of the hospital were simply more exciting. The retreat of bodyminds from an unacceptable world, the scream of symptoms against chemicals and contagion—both create the conditions of refusal: I am constantly discovering new things I cannot or will not do.

Or maybe it was about the taking of the picture, the process and the ritual, the feeling that the act of being photographed was what she was, if who we are is how we fill the vastness of our days. Or, maybe—and this is the explanation I favor most—maybe she followed Charcot into that studio for each private rehearsal enthusiastically, her eyes locked on him the whole time, and when she slipped into the passionate poses for the camera, she was triumphant. She was getting precisely what she wanted, and if I watch her closely enough, I might, too. But, of course, the most likely explanation is an ancient, thoughtless instinct toward survival.

I prefer Augustine’s photographs to accounts of her life and symptoms, written by doctors, labeling her poses and attacks. In the archive of her photos, her face is appropriated but also drawn down from clinical anonymity. Am I simply punctum hunting through her photos, limiting their significance to whatever they make me feel, whatever they present to me about myself? In graduate school, I wrote a contrived paper modeling such a hunt. In W. G. Sebald’s Austerlitz, the title character recalls observing a woman he believes to be his mother, who was forced to appear in a Nazi propaganda film: “Around her neck, she is wearing a three-stringed and delicately draped necklace which scarcely stands out from her dark, high-necked dress, and there is, I think, a white flower in her hair . . . I gaze and gaze again at that face, which seems to me both strange and familiar, said Austerlitz, I run the tape back repeatedly.” I wrote that I was waiting for something, a rupture in Austerlitz’s examination of the film as a pure document, but all I was able to find is that he described the necklace incorrectly; in fact, it had only two strings, an occurrence that bears an uncanny similarity to Roland Barthes’s error in Camera Lucida: Barthes misdescribes the necklace in a James Van Der Zee photo as a set of braided gold ribbons when it was actually a string of pearls—significant, given that the author identifies this necklace as his punctum in the photograph, the prick that ruptures his experience of concentrated observation. For Barthes, the punctum could not be willed; it is the accident that wounds. When the viewer approaches a photograph searching for such an accident, what is found is perhaps always destined to be of themself. Is it possible for me to surrender to Augustine’s photos, premeditating nothing, wanting nothing, receiving her only as she presented herself? What of her has pricked me? What can the photos be to me; what can they do? I am tortured, looking for a punctum to devour. I want to create a vocabulary, make her into words, but can only continue to inscribe what I see in her images.

I can’t provide a history of my illness, but I can provide a history of jobs I’ve done while sick and an account of what they cost me. Most of these employers preemptively sidestepped any legal obligation to accommodate the sick or disabled, by (illegally) hiring full-time workers as independent contractors. Most had no idea I had health problems—until I was forced to tell them, sometimes from a hospital bed. When one’s illness cannot be made visible, one’s entire life changes in secret. Having aged out of my first two careers of ballet and modeling, I found that the ways in which I was visible in my early twenties perhaps rendered my illness even less perceptible.

One summer in my early twenties, I edited for one of the last surviving fashion and culture print magazines on the West Coast. In my interview, the editor, who wore a gold cocaine spoon dangling from his neck, had recognized me from evenings spent at the Chateau Marmont, where he liked to hang out with the blondest, straightest boys and where I liked to people-watch and see if I couldn’t acquire some mania of feeling okay. I expected to hate the magazine job. I did not expect it to carry the expectation of more-than-full-time work for less money than my graduate school stipend, or that everyone on staff would smoke indoors. You should have seen it a few years ago, my coworkers said over my coughing fits. They used to make the interns take Adderall so they could work longer. They warned me that when it came time to close an issue, I’d be expected to work overnight to have it ready for the printers on time. I knew the cigarette smoke was a likely trigger for my vasculitis, but I didn’t see the point in complaining until I had another job lined up. The smoke gave me chronic throat infections. There are no ethical jobs under capitalism, I thought. I still had health care, but I had to work for it, and I sensed that the time I could spend living off truffle fries and cocktails that someone else paid for and selling the free designer clothing I had acquired was waning.

I spent a lot of time that summer on the rooftop of another nearby hotel, owned by a friend. I liked going there—you have to get really high above the city for Los Angeles to present as having any kind of order or plan. The women were proudly Eurotrashy, and the men dressed like rich older women, in nylon Prada suits with crystal brooches and silk smoking loafers. I liked the sweet relief of their platitudes, which, without cocaine or a comparable intoxicant, I would have found unbearable—about Moon Juice, Botox, twelve-step programs, and the character of the city, “Los Angeles.” I wanted that levity. A small group who often found each other on the roof liked to ask me about writing and media. One night, when the pain crept back in hours after I’d popped a Tramadol, when I knew that anything stronger would slow me down, I found myself bending over the little mirrored tray in the rooftop bathroom to do the line of cocaine being offered to me by a stunning designer I’d met about five minutes before. She told me she liked my haircut, that it was the Jane Birkin cut she’d always wanted, but she couldn’t pull it off because she has a cowlick where the fringe should be. I told her how I used to have her haircut—jaw-length and slicked back, like the famous photo of Isabella Rossellini taken while some guy lights her cigarette—which made us laugh. The designer wasn’t going to do coke tonight herself, she said, but given that I liked it so much, she thought she might as well—it was hard to find cool girls to talk to, she said with a heavy sigh. Surely, I must have remembered this from my modeling days.

I did remember, so I nodded and laughed again. With each line, I could become more gregarious and benevolent, so I could keep having conversations like this one, despite the pain coursing through my body. Strictly speaking, I was not supposed to do coke at all—even more than any normal person isn’t supposed to—because of the drug’s inflammatory effect on the blood vessels, but cocaine reinstates the desire to do everything and know everything and be everywhere that is marred by pain and painkillers. I missed it. And I was good at it: I took steady, conservative amounts, experienced no comedown or blues, and slept soundly afterward. It would be a shame for an affinity like that to go to waste.

The designer and I swaggered out of the bathroom and toward the rooftop fireplace to rejoin our group. We sat down on the chaises longues under a big fur throw blanket and ordered another round of drinks. As someone rolled a joint, the rooftop started to spin. Not spin like I’d gotten too high or had had too much to drink, but spin like I was about to lose consciousness. Sounds blended together, ringing echoed off the inside of my skull, the lights of the neighborhood swirled together magnificently. No matter, I thought. I’ve learned to accommodate this. I eased myself back on my elbows and curled up into a relaxed fetal position that I hoped might be seen as playful. When I saw a look of concern spread over several people’s faces, it occurred to me that I should tell them the name of my disease, in case I did faint—I’d had less-than-ideal experiences at urgent care centers whose doctors had never heard of it, much less knew how to interpret its inflammatory effects wreaking havoc on my body, whatever state it was in.

I’m probably just tired, I explained, careful to keep my tone calibrated to a dismissal, not a plea, but it might be this other thing. I think I’ll head home soon.

I heard my voice float up into the air around me, which felt somehow laden with surfaces. There was something in the designer’s eyes then, something hard to name. Finally, it came to me: pity. She felt sorry for me.

She said, Oh, I didn’t know you were ill—maybe we shouldn’t have been doing those lines.

Someone else asked if I’d tried Reiki. Other members of the group nodded, offering various wellness efforts that they believed to have healed them or others: gluten-free diets, cutting out all drugs but recreational ones, an energy healer on the coast, something called “setting intentions on the highest possibilities.”

You mean positive thinking? I asked. What I think about my disease doesn’t seem to have much to do with it at all.

To live and die in LA is to be surrounded by self-absorption sold as virtue. Why focus on the minutiae of my suffering, microcosms of worry, when I could do something to achieve temporary transcendence?

On my way home, my dizziness resolved—a close call—so I stopped for a Mai Tai at one of the many tiki bars that claimed to have created the drink. If you haven’t spent much time in Hollywood—not East or West Hollywood, but Hollywood Hollywood—the thing is that the days of Eve Babitz are long gone, and it’s quite grungy and meta-nostalgic: everything is decorated to make it seem like you are somewhere in the middle of the last century, but the only places that have been around that long can be rather bleak. I sucked down the slushy drink and took in the scene: tourists and the elderly who had been haunting those hot-pink vinyl seats for fifty years, illuminated together under neon lights and plastic toucans.

Later that summer, at lunch with friends, I did lose consciousness, hitting my head on the concrete ground. While I had long understood that my adolescent fainting spells had been caused by neuro-Behçet’s, this time, I got my first abnormal MRI reading—it suggested that my fainting spell had brought with it brain damage. Was it that I’d spent the summer overworked in a hot oven of cigarette smoke? Was it the occasional partying I’d come to rely on for morale? When someone in the throes of chronic illness experiences flares as unavoidable, only ever delayed, the details can feel too superficial to have much bearing on the illness’s overall trajectory. Nevertheless, I resolved to rein in the partying and quit the job at the magazine. A few years later, an assistant sued the CEO and editor in chief for sexual harassment. According to the suit, when the assistant confronted the offender about several events of harassment, the offender promised to separate professional and personal relationships and to stop doing cocaine with the interns.

While working as a staff writer at a progressive news site funded and published by an heiress, I called in sick one day from the hospital, in the midst of a horrible flare. Take as much time off as you need, the heiress told me. Rest. Heal. Rent was due the following week. I could not take any time off if I was going to continue to live under a roof or be able to pay the premiums on my subsidized freelancer’s healthcare plan. Fighting to breathe, to lower my fever, to feel the steroids coursing through my veins so that I might remain conscious, I’d lost the luxury of righteous class anger. Nothing was unexpected anymore because I no longer had expectations; nothing was killing me because I was already dying. Several years later, the heiress folded the publication rather than grant the remaining staff’s rather modest labor demands, like compensation for healthcare costs, paid vacation days, and new contracts to reflect California labor laws.

There are those who can afford rest and the healing that might come with it and those who must try perilously to steal them.

It is perplexing that health is so often thought of as ancillary to labor, class, and racial struggles, when it intersects so profoundly with each. As a crime reporter at a daily regional newspaper in college, I became acquainted with the linguistic similarities by which these struggles are obfuscated. I was taught to use passive phrases in my articles—“in an officer-involved shooting a man died at least partially due to his pre-existing condition”—which asserted a relief-laced logic: only that person will die because of the aberration of their individualized flaw. When someone has a preexisting condition, they are biologically irredeemable; their death cannot be entirely the fault of whoever or whatever killed them. It’s the kind of language we analyze in the medical humanities courses I now teach: a recent newspaper article on the Covid-19 pandemic recently reframed preexisting conditions as “pulling deaths from the future”: “Researchers will be studying if the COVID pandemic may be ‘pulling deaths from the future,’ hastening the deaths of people who were nearing death, though that will not be evident for several months.” The creation of distinctions between the social value of a lost “normal” life versus the perhaps closer-to-death “sick” life paints the deaths of the most vulnerable people as preordained. Artist Beatrice Adler-Bolton writes that “the idea that any of the death and despair that vulnerable populations have seen throughout the duration of the pandemic is necessary has been manufactured through frameworks of austerity. This results in deadly political inaction that threatens the survival of vulnerable people and will impact their health outcomes not just during the pandemic but for decades to come.”

In Illness as Metaphor, Sontag warns against using the former as the latter, to avoid not only linguistic slipperiness, but also the manner in which illness comes to stand for the culture’s fear du jour. AIDS stood for a fear of sex and homosexuality, cancer for the perceived repression that was punitively associated with it. Xenophobia is now embedded in what some call pandemics—the Spanish flu, the Chinese virus. The English called syphilis the French disease, the French called it the Neapolitan disease, and the Neapolitans said it came from America, where colonizers had been infected by the “Indians.” The headaches, fatigue, and cognitive dysfunction often present in autoimmune diseases and invisible illnesses are charged with interpretation: Derrida argued that the idea of democracy suffered from a fatal “autoimmunity,” in that its requirements for freedom and equality canceled each other out. (This metaphor seems more closely aligned with the medical definition of HIV infection, in which the immune system destroys itself, than with that of autoimmune disease, in which the immune system targets the body’s organs. In any event, the body/body politic contains within itself the possibility of its own undoing.)

Sontag wrote a little-known play on Alice James, Alice in Bed, in which she merges the character Alice James with Lewis Carroll’s Alice. James, who, in addition to physical ailments, suffered deep depression beginning at a young age, unsuccessfully attempts to gain her father’s consent to kill herself. (“But you’re not trying to want something else,” he says to her.) In the first scene, she argues with a nurse about whether she “can’t” or “won’t” get out of bed, where she spends her time immobilized but mentally abuzz. In an opium dream-like state, Alice is visited by women from nineteenth-century literature and by Myrtha, the queen of the Wilis in Giselle, who offers her counsel at a tea party. Myrtha offers to kill Alice’s father, freeing her from the cage of his desire for her to live. “I always thought a man would crush me,” Alice replies. “He would put a pillow over my face. I wanted a man’s weight on my body. But then I couldn’t move.”

Was it the man crushing Alice James, or was it life in the trenches of mind-body medicine? Even more scientifically minded thinkers like William James believed that the laws of faith healing could be studied and harnessed—he called the “mind cures” of the New Thought movement “the religion of healthy-mindedness,” and Charcot cited faith healings as evidence that the mind could extend its influence into the functions of physiology. The movement, which suggested that, through faith or the power of positive thinking, patients could alter the course of disease, was particularly popular with women eager to see their “intuitiveness” channeled toward improving their physical frailty. Alice found suggestions that she think more positively about her illness as exasperating as I do. She wrote to William in 1899 that she felt even more ill after a surprise visit from a woman who followed the teachings of the movement, who had insisted Alice’s symptoms were due not to her physical state but to her mind. “When I asked her what attitude of the mind was that she assumed in her wrestle with fate,” she wrote, “the poor lady cd. not make an articulate sound . . . she finally murmured ‘to lose oneself in the Infinite,’ wh. process seems to bring one rather successfully to the surface in the finite as the Curer ‘says her power is the same as Christ’s only less perfect.’”

It is peculiar that Alice’s symptoms were interpreted with the excess of hysteria, when her attitude toward her illness is clear, unsentimental—she was resigned to the life of an invalid. Toward the end of her life, she looked back on her illness’s trajectory: “As I lay prostrate after the storm with my mind luminous and active and susceptible of the clearest, strongest impressions, I saw so distinctly that it was a fight simply between my body and my will, a battle in which the former was to be triumphant to the end.” Suggestions that a patient who has accepted this corporeal reality try to heal through the power of their mind strike me as particularly punitive. The doctor who gently suggested I recalibrate my expectations, that I might never again feel “close to one hundred percent,” did more for my self-understanding than any civilian attitude or dietary proposition.

Chronic illness brings with it a terrible amount of anxiety: I am in pain; there will likely be more pain; I might always feel this pain. Yet, paying obsessive attention to the pain of symptoms is stressful; and stress makes the patient more susceptible to further flares of illness. Disease both reacts to stress and creates it. Genuinely accepting illness, without hope of futurity, is hard-won. It was not in her attitude but in her journal that Alice found a means of controlling the narrative of her illness: “I shall at least have it all my own way and it may bring relief as an outlet to that geyser of emotions, sensations, speculations and reflections, which ferments perpetually within my poor carcass for its sins.”

Todd Haynes’s 1995 film Safe, set in 1987, deep in the trenches of the Reagan years, opens with sweeping views of the San Fernando Valley from inside a black Mercedes: manicured lawns and mid-century architecture, a landscape that is pristine yet ominous enough to warrant that it might become a threat to our middle-aged, incredibly passive housewife protagonist, Carol (played by Julianne Moore). Carol speaks in a high-pitched, breathy Valley accent, struggles with small talk, and does not appear to have meaningful bonds with those around her. She seldom completes a sentence. (Could saying nothing be the same as saying no?) Carol’s conversations are strained; each ellipsis of her silence is loaded; yet it is through her symptoms that her character is most revealed. She believes she has contracted an environmental illness because she experiences physical symptoms when she is around certain everyday chemicals—has difficulty breathing, gets a nosebleed while at the hair salon. Her emptied-signifier trajectory is familiar: the men around her believe she is a hysteric; the family doctor insists nothing is wrong with her or believes her suffering to be psychosomatic. Eventually, Carol has a complete collapse at a store that has been fumigated with pesticides. She now believes she can no longer continue her current life and moves to Wrenwood, a New Age alternative treatment community in the desert, led by a charismatic leader named Peter, a “chemically sensitive person with AIDS.” At Wrenwood, Carol’s illness is believed and affirmed, though the familiar New Age story about sickness being the result of one’s thoughts and feelings still reigns: at one point, Peter tells his charges that “the only person who can make you sick is you,” nearly quoting New Age writer Louise Hay’s The AIDS Book: Creating a Positive Approach. It makes sense that Hay, whose writing career began with the small pamphlet Heal Your Body (a list of different bodily ailments and their “probable” corresponding metaphysical causes), was an inspiration for Haynes’s alluring leader, who urges people to take responsibility for how sick they are.

We never find out what is wrong with Carol. Some critics have taken issue with Haynes’s ambiguity, but this strikes me as the film’s greatest strength: whatever Carol’s illness is, it does not lend itself to a tidy narrative in the way that “real” physical or psychosomatic disease might. Her condition could improve, only for her to succumb to another immobilizing flare. If her illness is granted a name, it could only serve as a restatement of the problem. She will continue to be interpreted—by doctors, by her fellow Wrenwood inhabitants, and by herself—through the prismatic lens of biology and biography. Carol struggles with Wrenwood’s characteristic language and is apologetic that she is “still learning, you know, the words.” Asked to give a speech at a communal meal, she stutters, “I really hated myself before I came here . . . I’m trying to see myself, hopefully, more as I am, more, um, more positive, like seeing the pluses?” I can’t imagine what those might be. For the viewer, Carol’s failure to internalize Wrenwood’s teachings looks like a triumph of sorts, and even in the film’s final scene, as she struggles to say “I love you” to her reflection in a mirror, the red rash across her forehead speaks louder than her trembling voice.

When one simply cannot accept the impossible terms of forever illness, the idea that something, anything, can be done might be of comfort, no matter how shrouded in utter bullshit it may be. Louise Hay’s New Age doctrine isn’t far off from the positive thinking, self-help, and salvation-as-commodity flouted by the modern wellness industry—while some patients understand that positive thinking won’t cure illness, most people believe some version of my doctor’s assertion that “the mind and body interact in mysterious ways” and that these “ways” are receptive to some manipulation brought about by our choices or actions. Health-as-capital holds the individual consumer accountable for whatever might go wrong with their body: if they tried the right product, followed the right diet, took responsibility for their illness, they wouldn’t be so sick. Yet, it isn’t difficult to see why a sick person, someone on the margins, with few alternatives, might cling to the possibility of healing. Conspiracy thrives when reality becomes unbearable. It is the experience of seeking treatment for her illness that pushes Carol toward an examined life, even when—or, perhaps, because—the purported recovery requires a retreat from the stakes and conditions of the world.

When suffering is met with insufficient language, people sometimes, especially in Los Angeles, come together to create a new one. At a party, a friend told me I had to visit her healer, a man on the coast whose practice is advertised entirely by word-of-mouth. He works with celebrities, coaches, athletes, and was himself a former Olympic swimmer. When my friend could not get pregnant, she started seeing him to “realign” her “whole situation.” She believes it worked, and calls this man “the real father” of her child. The “suggested donation” for a session with this healer was about equivalent to my monthly rent at the time. I, a sensible person with a veritable, medically specific illness, did not want to see this healer, but soon after the party, the healer’s wife, who handles his appointments, called to schedule a session that I had been gifted.

It’s fine, I told myself—it’s normal, often quite reasonable, to be deeply distrustful of biomedicine, especially in LA. I had recently interviewed a wellness guru who believed that clean eating had cured her lupus and inspired her “chemical-free” skincare line. My friends go on meditation retreats; raise their children on gluten-free diets; breastfeed their verbal toddlers; do Ayurvedic cleanses, past-life regression, bee sting therapy, raw food diets. My grandmother practices Reiki and used to wave her arms above me as I lay in bed, sending the badness out of my body. This wasn’t even the first time in recent memory I’d been given a quack treatment as a gift: I’d recently completed a cryogenic freezing session “where the Lakers do it”—“it” ostensibly being “reducing inflammation and diseased tissue through locking yourself in a freezer for a controlled amount of time.” Cryotherapy’s effectiveness has not been demonstrated in controlled studies, and my session considerably exacerbated my Raynaud’s symptoms, because . . . duh. Countless friends have recommended Transcendental Meditation or body scanning, which aims to release unrealized tension by focusing on individual body parts, moving gradually from the feet to head. I find this doesn’t relieve tension so much as it makes me hyperaware of all the locations of pain and their corresponding tensions that I will be unable to correct. I usually take a painkiller after an attempt at “body scanning,” and the pains of each different body part start to soften around the edges and bleed together. I sometimes say that opiate painkillers don’t “kill” pain so much as make everything so foggy you don’t notice your pain in the same way, taking any lucidity of thought, feeling, or sound with them. This seems the most I should hope for.

Debates about biomedical versus alternative treatments for autoimmune conditions—like those concerning vaccinations—purport to be about science, but they might as well be about power. We think of a charlatan as someone who preys upon the weak and desperate, but so many people are suffering under a system that will not offer them relief that entire cottage industries create themselves to offer it. People in pain can be forced to make decisions out of desperation, and when the only options offered in the health-as-capital economy are terrible, it can be difficult to do an effective comparative analysis as a health “consumer.” Alternative healing modalities often profess that the material and immaterial parts of a person are enmeshed and that thoughts and feelings affect the body on a physical level. While this is frustrating, it isn’t inherently any more absurd than cognitive behavioral therapy’s belief that our thoughts, and not external material circumstances, cause our feelings and behaviors. This is what I told myself, repeatedly, before I went to see the healer. What did I have to lose? (The health consumer always has something to lose.)

I was running late. It was a hot day, and the freeway was sprinkled with convertibles with their tops down. When I finally approached the manicured, unironically palm-lined lawns of the neighborhood, my unease had evolved into pure, unadulterated dread. As instructed, I followed the path to a house where the man whom I presumed to be the healer—I’ll call him John—was sitting on one of the sofas. The other sofa, apparently, was for me. I apologized profusely for my lateness as I shook his hand—a gesture he seemed to find puzzling—and noticed that he had been sitting there entirely unoccupied, perhaps basking in his own undiluted mindfulness. Stop being such an asshole. You came into this with an “open mind.” There were no TV or computer screens in the room, but there was some cheesy pop music playing lightly in the background. I was not sure where it was coming from.

The way John’s eyes shifted up and down my person reminded me not so much of ogling by sleazy men but, rather, the unsettling, quick assessment of certain newly-introduced women.

That’s a short dress, he said to me, eyes still flicking. It tells me something about the kind of attention you’re seeking.

(This is when I should have walked out.)

I told him it was a gift from the designer—dry-clean only—and that the only thing it should indicate to him was that I’d been too overworked and sick to do laundry.

Good thing that what I do is growth and healing, he continued. Whatever has messed you up Out There, In Here, we’ll take care of it.

Growing up, I always admired kids who, when forced into therapy, refused to speak, recognizing the betrayal that language would be to themselves and whatever landed them there in the first place. That I-would-prefer-not-to refusal. I, on the other hand, have done a lot of therapy, and as my continual submission to the medical gaze suggests, I err on the side of “compliant.” So when John asked, Okay, what’s the problem? the words tumbled out of my mouth with the ease of an elevator pitch that has been rehearsed countless times:

I have an autoimmune disease. My illness is the most significant strain on my friendships and relationships. I indulge vices and people who allow me to forget that I am sick and will become sicker. I am then sometimes unable to return their expectations of intimacy—I’ve led them on, the person they like spending time with is not someone I am always able to be. I do not let lovers near my illness; I am only a lover when I am well enough. We only speak of illness in order to participate in a practical exchange of information—sorry, under the weather tonight, I can’t make it after all. I find it more gracious than putting someone in the position of having to decide if being around my sickest self would be too much, too difficult for them: to my arms-length friends, I am kept in an imaginary state of health. I prefer to think of myself this way, too. I do not feel equipped to make medical decisions, given that I often cannot find any distinctions between the medical interventions that have saved my life and those that have caused me irreparable harm. Writing is the first thing that has made my life feel meaningful since ballet, and I am haunted by the ghost of my capable body, by my thinning hair and ruddy complexion, which worsens with each round of steroids. Last but not least, it disgusts me even to speak of these things, but they define the very essence of my life.

John had barely blinked since I began speaking. Your disease, he said, in a tone that suggested he did not believe what I had was a disease at all, it’s inflammatory in nature, correct?

I confirmed that it was.

Inflammation, he said, is heat. Sexual energy creates heat. You must have had sex very young. When a young woman ignites that fire too soon, it courses through her for the rest of her life. I bet that explains why these “illnesses” occur so much more frequently in women! He kept his hands folded as he spoke, then he raised one to stroke his chin, awaiting my response.

Stunned but not surprised, I explained about the gene, the biomarker, the thing that presents my illness as “legitimate” to both doctors and quacks like John, feeling a twinge of guilt for perpetuating the biomarker-as-legitimacy paradigm. I offered up some potentially relevant information without heeding his evidentiary demand of confession: I was an intense child. I approached the world with an intellectual fury, felt very deeply, liked extremely demanding physical activities. Doctors have confirmed that dance had a negative impact on my arthritic state.

It’s nothing to be ashamed of, John assured me, as though one could tell someone they were made sick by sex they had as a child without an ethical underscore. You were full—he was gesticulating now—of young, vital energy, the kind only young women have. He was a vampire, drawing that energy, and now you’re paying the price for it, with this heat, coursing through your body.

I tried not to sigh, but I did, followed by a joke about how he seemed not to have learned too much from the Satanic panic and the danger of suggesting false memories, huh?

He stared at me blankly.

I was uncomfortable, and so offered one final acquiescence: I understand what you mean, in a sense. My body does seem haunted by something. (People who buy into this sort of thing tend to assume that there must be a past dark enough to have created such a shit show.)

Your friend who sent you here, he began again, has suggested that you still live somewhat promiscuously. Another sigh. I’m piecing together a pattern of promiscuous behavior, he said. You’re still affected by the heat.

Sure, I replied, I can very much see that is what you are piecing together.

Despite John’s rehearsed, authoritative calm, I assumed he was as uncomfortable as I was—we were essentially completely uninterested in speaking to each other; we found each other discursively wayward; there was no way we could have a conversation that sounded like anything but a demolition site. We both smiled stiffly.

He turned the cheesy pop music back on and guided me through some odd breathing exercises. It occurred to me that this was the first time I had discussed my illness, with anyone but a doctor, without speaking of Augustine. As I prepared to leave, he told me things would be different from now on, that I could expect not to be as sick.

John keeps, or tries to keep, a low profile. He has no website, no social media profiles. When I looked him up, the first result was a warning on a sketchy website that he was “a fraud and dangerous to your health.” Apparently, he had been coaching a professional surfer in breathing exercises that bordered on self-asphyxiation. Minutes before the surfer entered the water in Topanga for a night surf, he had been texting with John’s wife and doting secretary. He was later found facedown in the water, dead. The autopsy revealed that three major arteries to his heart were blocked. In the comments section of the article, former clients of John’s shared their stories: One wrote that John “almost killed me and sexually assaulted me.” Another said he had assaulted them as well. Still another said that in their single session with John, he “asked me coldly about my sexual history, including an inquiry about abortions (never had one) . . . I did weird breathing exercises that had me almost hyperventilating . . . [He] was way off. I found the experience violating and awful.” Yet another client said John “almost killed me as well. I had to get a CT scan from almost breaking my skull open from these questionable practices. He also would touch me sexually when I was passed out or was fading out.” Another: “He almost ruined my life.”

What “healers” like John believe—that “the mind and body interact in mysterious ways,” that we repress trauma and it causes turmoil in the body—is, to some extent, accepted by both modern medicine and psychiatry. When New Age belief combines with dangerous methods, and the two don’t appear to be altogether distinct from conventional “wisdom,” what is to stop desperate, suffering people failed by the medical system from being subject to the control and domination of men like John? What about those who do not have access to medical insurance or disability, or whose illness has not yet been categorized and named? For patients who have found the bureaucratic, impersonal medical system unable to account for or alleviate their suffering, the focused attention of a pseudoscientific healer might be understandably enticing.

In A Journal of the Plague Year, technically a work of fiction, Defoe writes about Londoners’ anticipation of the plague through a rise in astrology, fortune-telling, and pious prayer, disseminated through pamphlets and almanacs. While my diagnosis legitimizes my disease in the eyes of doctors and allows me access to treatment, much of what I am advised to endure as part of the course of treatment seems in denial of the societal conditions that enforce the illness. A person who experiences symptoms possibly tangled up in such a psychic conflict could pursue psychoanalysis—my reading of Freud on hysteria echoes that of many contemporary psychoanalysts: the hysteric’s condition should not be interpreted as a divergence from a healthy norm but, rather, as protest against the existence of the norm itself—but psychoanalysis is seldom covered by medical insurance and is even less accessible to the average person than medical care.

If anything, my (albeit, often failed) attempts to have grace for friends who find solace in New Age thinking came from a realization: it took me years outside the ballet world to realize that when people made jokes about crazy aging ballerinas, they were talking about me, as I had been. Nothing looks quite so crazy from the inside.

A quick perusal of my syllabus for an undergraduate course in the medical humanities suggests myriad additional reasons people in underserved and marginalized groups hold warranted mistrust toward the medical establishment: the horrifying experiments conducted on enslaved Black people, attempts to justify slavery through “proven” racial difference; the Tuskegee syphilis experiments; the Puerto Rico contraceptive pill trials; forced sterilization of Native women; the spirometer; et cetera. My course closely examines the case of Henrietta Lacks, a Black woman who, despite not having given informed consent, provided the first immortalized human cell line while being treated for cervical cancer at Johns Hopkins in 1951. Lacks’s family had heard stories about Black people being abducted by doctors after nightfall—stories of “night doctors” had circulated in their community since the 1800s, some of them told by enslavers to scare enslaved people into submission and others thought to have come from actual abductions for medical experiments. When the medical establishment has a long history of violence, it is no wonder patient-consumers lose their trust in it.

Recently, a friend told me she refused the Covid-19 vaccine because she believes Western medicine to be evil, inept, dehumanizing, driven by capital and not life, and in the pockets of Big Pharma. I could not disagree with her reasoning, only with her conclusion that the risks of the vaccine outweighed the benefits. Because so much of autoimmunity is speculated to be viral-onset, I suspected that young, generally healthy people who did not consider themselves at enormous risk would develop the long Covid symptoms that so closely resemble autoimmune disease: breathing problems, abdominal pain and digestive difficulty, fatigue, and general pain. Even when a large number of people experience the same collection of chronic symptoms, it’s difficult not to be cynical about what it will take for them to be believed and treated. When my unvaccinated friend got Covid, I held my breath as she treated it only with herbs from an acupuncturist leading an herbal Covid treatment clinical trial at a new integrative medicine center granted a veneer of legitimacy through affiliation with the university system at which I teach. Public health measures are enacted through us, through our bodies, as they must be, but there are many directions in which one might point a finger of blame before settling on a population forced to be health consumers. The health consumer faces the very means of their staying alive being withheld for the benefit of capital and must then wade through the trenches of false dualisms—artificial/natural, self/outsider, public/private, left/right—while being expected, somehow, to exit with medical literacy.