the gallery of maladies
on long covid, hypochondria, and the forums
i. the dialectical disease
It is 2:30 am and I am laying on the sofa unable to breathe. There’s a Business Insider video about the history of Pantone color matching playing on my phone, but every time I start to pay attention to it, I inhale sharply, seemingly beyond my own volition but not, of course, beyond my powers of observation. And as soon as I take that breath, my thinking about breathing becomes as irregularly cyclical as the breathing itself. It is 3 am. I turn off the sleep function on my Apple Watch in order to check my heart rate, which leaps from 71 beats per minute to 88 in a matter of seconds, in hindsight a self-fulfilling prophecy, but at the time, a conformation of the aberration of my being.
It is 3:30 am. I walk to the bathroom and take the pulse oximeter out of the bathroom cabinet. The reading is normal. 98/102. I watch it with loving vigilance for at least a minute, waiting for the inevitable, my pulse blinking siren red in the darkness, but the number stays the same. I should be relieved by this information, but I am not. This is not what is wrong with me, which means something else must be. I return to the sofa. I take a half tablet of trazodone to lull myself back to sleep, though it takes another hour because my body is fighting so hard against its desired effects, subcutaneously afraid that should I go to sleep with elevated respiration, I’ll stop breathing and never wake up. When I do, in fact, wake up at 8:30 am, my chest is sore. I check my vitals. I check them again, still somehow convinced that the tightness confirms a more sinister pathology than the one whose symptoms I’ve consistently displayed for twenty years — two thirds — of my life. Perhaps the most astonishing part of all of this is how, no matter how often I go through this cycle, I never seem to learn.
I first became a hypochondriac at around the age of eleven, when I went from being a normal fifth grader to being plagued by night terrors, palpitations, and sleepless nights that ultimately landed in the hospital with a klonopin IV hooked up to my arm — all in a matter of months. My body, which had just begun its prepubescent metamorphosis suddenly became wretchedly, incessantly aware of itself, whether out of some form of helpless anger or genuine fear of change, or perhaps an underlying gene expression, I’ll never know. Yet to this day I wonder how the very processes of life could turn into an ailment of the self, where these destructive impulses came from and why the transformation from mentally well to mentally ill was so swift and so brutal.
The truth is, no one knows what exactly causes hypochondria, perhaps in part because it’s an illness no doctor wants to deal with. Molière, for example, had more to say about it than Freud. Studies have showed some evidence of genetic heritability, but preexisting mental illness and environmental factors — ranging from adverse events in childhood to overexposure to health-related information — are assumed to be the primary determining factors.
The primary symptom of hypochondria is called somatic (or somatosensory) amplification, by which ordinary bodily processes (especially one’s vitals) are perceived by the unwell subject to be aberrant, intense, or unbearable. This can present as “hypervigilance” — a self-protective state in which one is always on the lookout for physical abnormalities or, on the other foot, as a spiraling, maladaptive reaction to actually existing sensations, such as when one is sick with a minor illness.
The DSM separates health-related mental illness into separate disorders. Hypochondria is more narrow in scope, wherein the subject has a preoccupation with or fear of a specific, serious illness, such as heart disease or lung cancer. Somatic symptom disorder, on the other hand, is defined by vague or variable symptoms that don’t get better with treatment because they are psychological in nature. Both are comorbid with (or perhaps caused by) anxiety and mood disorders, obsessive-compulsive disorder, and a variety of other psychiatric ailments. In all cases, the recommended treatment is the same as other forms of persistent anxiety: a combination of cognitive behavioral therapy and SSRIs.
What the pill-pushers miss, however, is a fundamental truth of hypochondria, which is that, rather than having a distorted relationship with health and medicine, the hypochondriac instead has a distorted relationship with the self. In psychoanalytic thought, which has more interesting things to say about the subject, hypochondria is seen as a neurotic or narcissistic misdirection of one’s energies either as a substitution or compensation for something the patient lacks or has lacked (such as parental attention, for which the medical system can serve as a replacement), or as a self-protective mechanism against an even greater, deeper-rooted — sometimes even unutterable — loss, pain or fear.1
Each patient on the couch is, of course, different. But the way hypochondria (which I am now using as a catch-all term) presents itself subjectively is common across all subjects. It is, to speak as one of its victims, is essentially a dialectical disease, which is in part why it’s so hard to treat. Sickness and not-sickness entangle themselves in a cyclical struggle whose ultimate outcome is fraught and incomplete because what is true and what is not true are coexistent in the same subject, are born from and contained within the same conditions — whether they are psychoanalytical or biochemical in etiology. The worst part is, knowledge does not change this outcome. I know I have hypochondria. I don’t realize it’s hypochondria until all other avenues have been exhausted. When I do realize it’s hypochondria, I feel such shame that, when I experience another bout of it, the cycle of denial only continues because I’d prefer the problem to be anything but hypochondria. And, after all, it could always be something else.
The subject is ill in that they do, in fact, suffer from an illness — hypochondria — that is both self-perpetuating and self-affirming. This is exacerbated by the of the medical professional, who, inadvertently half-lying, tells the hypochondriac that there is nothing wrong with them (there is) or worse that they have fabricated their woes wholecloth, a sentiment which only worsens their condition by driving them back into their fantasies with renewed zeal. Now even the doctors can’t help them. However, the hypochondriac is not ill in that the supposed maladies with which they are obsessed are simply not present. Their body is, for all intents and purposes, often perfectly healthy, their alleged symptoms merely the processes of the body itself.
And yet, in another twist, anxiety, the autoimmune disorder of the mind, can attack all parts of the human corpus; in a body where nothing is wrong, it manufactures wrongness. Anxiety targets and stimulates every bodily system. It incapacitates the lungs, sends the heart into tachycardia. It activates the sweat glands, produces tremors in the hands. It can (and does, to the hypochondriac) disguise itself as very serious illnesses from anaphylaxis to a heart attack, the kind medical websites tell you not to take a chance on.
Already a disease of the mind, it attacks the brain itself, clouding cognition and plunging the subject into uncanny states of being that feel dangerously close to madness, such as depersonalization, where a person exchanges their body for the perch of outside observation and derealization in which everything, even the most familiar people, places and things — becomes terrifyingly foreign. All of a sudden, nothing is as it should be, as though one has been displaced into a completely different observational and temporal realm.
Once a state of panic has been entered, hypochondria itself becomes an inescapable tautological force. With symptoms so severe, a diagnosis of mere anxiety, the thing people feel when they leave their phone at home, or when they’ve fallen behind on their responsibilities, seems to its victim insulting. This is one of many tragedies of the hypochondriac, that they defend themselves against the prospect of recovery by flattening an ailment into an emotion or worse, a conspiracy. Their trivialization of anxiety, their paranoid belief that it is a lie doctors tell them to elude the real cause of their condition, ensures that they will never break their cycle, that their fear of sickness, in turn, obscures their need for it.
Paradoxically (though not to psychoanalysts), the hypochondriac both yearns for doctors and yet feels rejected by them; simultaneously believes in their expertise — needing it, as they do, for the goal of legitimacy — while denying its existence, painting the doctor as either a common fool unable to identify what is clearly right under their noses, or as a malignant figure unwilling to offer the care to which the hypochondriac feels entitled. In the latter, they are unfortunately less delusional than they may seem.
Because of the expenses, scarcities, and systemic biases inherent in the for-profit medical system, it is true that many who need help (including the hypochondriac) are not able to get it. In many cases, usually owing to widespread racial and gender discrimination, those who actually have rare or difficult to diagnose illnesses simply aren’t believed.2 The epithet of hypochondriasis is used against them as often as it is the hypochondriac, further diluting the term itself while stoking the flames of anti-medical (if not anti-scientific) sentiment that have spread, in recent times, into an uncontrollable wildfire.
The wellness industry, meanwhile, waits perniciously in the wings, ready to embrace with open arms, those who either distrust or feel they know better than doctors, those rejected by the medical system, or are simply unable to access it, and, of course, those who believe they are physically ill when they are, in fact, not. (While not the subject of this essay, an important subvariant of hypochondriac especially catered to by the wellness industry is the conspiratorially-inclined, those who become increasingly convinced that the trappings of modern society, from pasteurization to vaccines, are secretly poisoning them.) Wellness offers the hypochondriac what no doctor can — the confirmation of their ideas, and, more importantly, a feeling of agency. You do have a rare autoimmune disease, and not only that, it can be cured by taking these innovative supplements marketed by a podcaster.3
ii. the virus
One of the great ironies of my hypochondria is that I didn’t suffer from it when the pandemic hit. Despite the terror of a constantly spreading and at the time incurable illness, these fears were assuaged by the simple fact that everyone believed in it and behaved accordingly. People masked up and practiced social distancing. They avoided large crowds and met friends outside. In general, they showed care towards one another out of both fear and compassion. When I finally went to get my first Covid jab, standing in line at the United Center among hundreds of other people, I was moved to tears by the benevolent potential of the state, saw in its response to this crisis a glimmer of a better world.
Soon however, a darker truth — and a more honest portrayal of the state under capitalism — emerged. Even though millions were still sick and dying, the pandemic was declared over. Mask requirements were dropped. Efforts towards both a real cure and the mitigation of environmental factors, specifically poor indoor air circulation, were abandoned not unlike the rest of the American public. It was time to get back to work, back to the office, back to generating revenue for the people who really matter in this world.
Much of the dark future we are living in can be attributed to the fact that innumerable people — really all of us — were sacrificed at the alter of “the economy” as though it were separate from our bodies and what they do, feel, and believe. Just simple inputs and outputs. Literal grist for the mill. Nothing good can come of a society in which human life itself is viewed as disposable, in which death becomes trivial if not meaningless — not even a rhetorical cudgel but a necessary evil. Each of us is dealing with this abandonment in our own ways, mostly as a form of quiet, deeply repressed denial. To so much as write about the pandemic or the illness that perpetuated it provokes such vitriol, it seems unlikely that any form of collective healing, much less action, will come to pass anytime soon. After all, you don’t see many novels about the Spanish Flu.
I caught Covid in a viciously ironic way. I was on an airplane, doing the right thing. I was vaccinated. I wiped my hands with a disinfecting cloth. I wore an N95 mask, which I think everyone should do in large gatherings or while in transit (especially on airplanes which are already nasty) as a matter of basic hygiene, no different from washing your hands after you take a shit. If you point this out, people, for base memento mori reasons, call you a paranoid scold. Well I’m not paranoid, because, after five years of avoiding the virus, I got really fucking sick through no fault of my own.
My first symptom was a wretched, pea-soup brain fog, probably because the virus found the part of me that was already injured. At the time I was in New Mexico and chalked it up to altitude sickness. Five days later, only when I started to cough up phlegm, did the double line emerge. I went to the urgent care and demanded Paxlovid, precisely because studies show that it can reduce the risk of long term illness. The nurse (who was not wearing a mask) told me I should take Vitamin D and Zinc instead and I basically told her to go fuck herself and give me the pills. For five days, I suffered through nickle-mouth and endless episodes of Taskmaster until I started to feel better. That is, until I didn’t.
Even though the cold-like symptoms lifted, others remained. I became terrorized by bouts of panic and sudden and violent mood swings, some of which plunged me into dangerous and startling depths. No matter how still I kept my body, I found myself short of breath. Most of all, the fatigue was unbearable. I felt as though I was made of lead, like some kind of medieval effigy. Short trips to the bathroom required marathon-like effort. I showered sitting down. Whenever I sat up, stood, or walked, my heart rate would leap from the already aberrant 90s to the 130s. Only in the past week or so — over a month later — have I been able to go on short walks or work for more than an hour. Slowly, four naps a day have dwindled into one.4 But perhaps worst of all, the longer I went without healing, the more my thoughts circled around one drain: the possibility, very real, that I would never get better. In that regard, I found, to my detriment, plenty of help.
Covid-19 has a deleterious relationship with hypochondria. More than any other illness, it confirms hypochondria’s fears and biases while satisfying its subconscious desires, including being sick, ensuring constant perpetuation. The illness is everywhere; one can contract it at any time. Worse than that, it is serious. It does still-unknown damage, especially in the long term, where studies have found that, even in mild cases that seemingly resolve, it can cause everything from small blood clots to myocarditis and neurocognitive damage.
Acutely, it has no agreed-upon average severity or duration. For some people, it’s no more troubling than the common cold and resolves in a few days. For others, it becomes a temporary or permanent disability: Long Covid. Nobody knows why or by what mechanism. Worst of all, the doctors, unlike with heart disease or lung cancer, have yet to uncover a proper treatment for Long Covid or even for some of its symptoms, making it both nebulous and incurable, and leaving its sufferers in abject despair.
In its long or short form, the virus’s range of symptoms is a dictionary. They affect the brain and nervous system (anxiety, depression, brain fog, loss of taste or smell), the lungs (cough, dyspnea), the heart (tachycardia), and the whole body (fatigue.) When a psychologically healthy person catches the virus, it already can prove — and feel — devastating. When a hypochondriac catches it, it is world-shattering. Covid creates for them a funhouse mirror, with new, sicker versions of themselves appearing in every direction. Hypochondria, an illness once metaphorized as a spiral, becomes instead a tessellation, spreading into the ether wherever its pieces fit together.
One could even say that when the hypochondriac catches Covid, they have already caught Long Covid, and each day their symptoms persist, even as they improve, the diagnosis continues to confirm itself. In both one’s addled mind and in the real world, it is all entirely plausible. The only cure for the fear is to get better, but one, of course, may never get better. There is even some evidence that the fear itself can inhibit this from happening. Covid becomes a nexus by which the bodily harmless condition of anxiety can become a real, potentially irreversible sickness.
This is why the worst thing the hypochondriac can do is go on the internet. This is true to such an extent that doctors now have a name for it: cyberchrondria. When I reached out to a few writer friends for whom it took longer than usual — ranging from a few months to over two years — to recover from Covid, the first thing they said to me was whatever you do, do not go on the forums. Reader, I went on the forums.
The hypochondriac has a similar paraphilic relationship to online “support groups” as they do to doctors, except, unlike doctors, online support groups not only tell them they’re right, they point to other, previously unconsidered things that can be wrong. To be fair, forums are often comprised of people seeking solidarity with one another in times of illness and who genuinely try to help others in their recovery. This is especially true with regards to Covid because of, well, the mass abandonment of society to illness, but also the lack of proper care or even outright denial people receive from doctors — that is, if they can afford to see one.
That being said, these spaces lack the very important interpersonal guardrails of in-person or video-based support groups, namely a real, actively involved moderator imbued with the knowledge of both the subject matter and of the signs of psychological harm people can inflict on one another. On the free-range internet, one is faced with all forms of native pathologies, ranging from cranks and trolls, to cyber-Munchausen’s to wellness influencers and, well, other hypochondriacs. (When I first posted in /r/Covid19positive about my symptoms, I got two responses. One basically amounted to “Good luck, I’ve had it for over two years.” The other was someone very insistent that I try bovine colostrum.)
Above all, forums, especially medical forums, are more often than not negatively polarized. The people who get the help they need, the people who get better, the people who find outside support from friends and family no longer need to go online. (This is why the only good Covid subreddit is /r/longhaulersrecovery.) Often, all that’s left is sick people giving advice that doesn’t work to other sick people. If you say something to this effect, you get permabanned almost instantly.
Meanwhile, helplessness, if left to fester, can easily turn into malice. On other platforms, I found some in the “COVID community” obsessively collecting obituaries of people who died under 60 from heart attack, stroke, and cancer, claiming them as victims of the virus with an almost malignant glee. Another one bites the dust. Oh well, that’s what you get for not listening. There will be more. I don’t think this helps anyone. All it did was scare the shit out of me, a victim of the same negligence that still victimizes all of us. Here, a systemic problem that, as it did in the beginning, requires a massive, collective solution routinely gets blamed on individuals, many of whom, like me, do take precautions, and even if they don’t, do not deserve to die. I don’t think anyone, COVID or otherwise, deserves to die. That is what separates me from the people in power who got us into this mess.
Speaking as the hypochondriac, however, what was most harmful to me was the impact on healing. Not only was I surrounded by stories of fractured human lives and conditions much worse than those I was experiencing, I was also subjected to actively harmful content inappropriately recommended to me by these websites’ algorithms. After all, extreme content equals more views equals more engagement equals more profit. The X platform exposed me to post after post saying that Covid is worse than AIDS, that everyone secretly has Long Covid and will subsequently drop dead in a few years, and that it gives healthy children leukemia.5 In my already unwell state, the Reddit app sent me multiple push notifications for posts containing suicidal ideation.
Then, there’s the advice. Besides the fact that everybody and every body is different and that one should not go on the internet looking for actual legitimate medical advice (which most of us lowkey do, lawyers aside) — the further one treads from reputable websites, the more this advice can be actively dangerous for reasons that should be obvious. More benignly, on forums, people throw everything but the kitchen sink at their symptoms and are thus unable to say which of these factors actually helped them get well. Someone trying to get better fast so they can get back to work does not have the time to engage in meaningful self-administered clinical trials, after all.
Covid is especially evil because which problems are vs not caused by the virus are hard to discern, especially if they are lingering, if separately treatable remnants of the virus itself. This is especially true of anxiety — which Covid is known to cause. Now the hypochondriac’s foe is back in an even more pernicious form. The virus causes anxiety which looks like other symptoms of the virus, a virus one has already caught. The forums often actively discourage the idea that some of one’s physical symptoms are related in any way to psychiatry even though the virus actively targets the brain or even to ailments that may have been preexisting yet augmented by illness such as vitamin deficiencies or, in my case, cervicogenic headaches. Where the virus ends and the rest of the body begins is often non-negotiable.
It costs little to test for and treat these aforementioned problems without having to concede that the virus was at fault. I only started to get better when I told everyone I wasn’t able to work and, later, when I adjusted my psych meds, which, it turns out, had been depleted by Paxlovid. But because the forums are hypochondriac in essence, everything becomes distorted by the virus, by the need to know about the virus and the desire for confirmation, that it is the virus, that I am sick. There were days when I was on the floor in tears believing that I was never going to work again. And, truth be told, I wrote the better 2/3rds of this essay before I got sick. Because of the neurological symptoms I still suffer from, I don’t know if I’ll ever write something so coherent ever again.
There were sudden flares of panic when thinking about heart disease or dysautonomia. There were huge Amazon shopping carts full of supplements none of which I ran by either my doctor or my psychiatrist, believing that they’d take the care I needed away from me. Subsequently, there were days I spent on the toilet from oversupplementation, water fasts, and bone broth diets. There were days when I believed I suffered from a whole alphabet of chronic illnesses, from MCAS to Sjorgen’s syndrome. There were days when I nursed my heart rate with the kind of devotion previously reserved for saints.
While I’ve also made my mistakes when caring for myself, especially in terms of rest — both in that I didn’t rest enough at the beginning only to rest too much for too long out of fear — I believe wholeheartedly that some of what plagued me, like fatigue, would’ve gotten better sooner if I didn’t listen to the forums. In the course of the last two months, I’ve become so deconditioned that I can barely lift my grocery bags or walk more than a mile because I followed the cardinal rule of the forums: if you get out of bed, you will never get better. If you feel well enough to pursue treatment avenues such as physical, vestibular, vision, psychological or occupational therapy, what have you, you are only ever risking your life more. Forgive me, but unless your condition is so severe that you are bedbound and require outside care, I just don’t think that’s true.
However, of all the bad things I saw on the forums — from the default assumption of the ME/CFS-type of long covid over others,6 to the advice to start an aspirin regimen without the consultation of a doctor, to the championing of various online platforms that use AI for their analysis and dole out some pretty heavy pills left and right, all while charging an arm and a leg to do so — the one that strikes me as the most pernicious is a rather common bias in American life: the bias of the pill form, the idea that a disease is not real or at least not serious until it has a wholly biological basis that can be treated systematically through medication.
This bias inevitably both forecloses and establishes a culture of fear around all kinds of profoundly helpful treatments, even if they aren’t for everyone (nothing ever is) or don’t cure every part of the disease: a fear that their success would de-legitimize the illness in the eyes of outsiders. I know, deep in my heart, that this behavior is just as much a search for healing as it is for control — over one’s body, over one’s future, over the insane and sick-making times we live in, that it is, above all, a response to loneliness and abandonment. But I refuse to acknowledge that search for control as being healthy and harmless to others. The uglier, messier truth is that no disease exists in which the matter is only physiological, a mere faulty mechanism, that illness writ large doesn’t involve some manner of thinking, history, instinct, care or belief. To say otherwise is the logic of the car mapped onto the body, living, breathing, inherently imperfect. Or perhaps the logic of the computer.
*
Whenever you write about the internet and the harms it does to oneself or to others, people of all political stripes come out from the woodwork with their own versions of cyberlibertarianism. For whatever reason, the internet we presently inhabit, ruined as it has been by profit-driven psychopaths whose websites make people insane, drive them towards violence or into the arms of violation can’t and should never, be regulated. In many ways, it’s rather like the supplements, born from the same laissaiz faire 1990s and reflective of the belief that governance begins and ends at the self. The truth of the matter is, the internet, more than anything else, is responsible for vaccine skepticism. Who knows how many people the wellness industry and its army of online cranks kill every year. And yet, the internet is always harkened to be some kind of bastion of inherent truth, as the only real avenue for everything from self-expression to medical advice simply because it is the most unimpeded. I think the time to challenge this notion has long since passed.
In many ways, COVID is the first post-internet illness. It is a disease whose course is altered and augmented in ways both positive and negative from internet input, be it citizen science or anti-vax conspiracy theories to more morally ambiguous anti-doctor rhetoric. For the very first time (though this was of course intimated by AIDS), a virus has become broadly interpretable outside of the medical establishment, through different means and cultures of varying levels of intellectualism. It is both conspiracy and subculture, diagnosis and identification, personal, collective, or otherwise. For those like me who still suffer from it, hope is kept alive and shattered in the same moment because, at the end of the day, there is no real truth. We do not know. All there is, is the sickness. For me, two sicknesses, in fact, intertwined, in love, maybe forever. Both very, very real.
A detailed overview of psychoanalytic theories of hypochondria can be found in this paper. After I hit my head, hypochondria, following the theory of Robert Stolorow, served as a defense mechanism against a very obvious narcissistic injury — in this case, an over-dependence on my status as a writer, which was in jeopardy, as the definitional feature of my identity and sense of self-worth.
This is especially true of chronic illnesses whose diagnoses rely more on subjective criteria, such as fibromyalgia, ME/CFS, and dysautonomia, which, until relatively recently were mostly dismissed as somatoform disorders or, because they affect women more than men, simple hysteria. (Long covid also falls within this category.) To this day, despite their devastating effects, these illnesses still lack research, funding, and proper treatments and are treated with hostility by the medical establishment.
When I had my brain injury (which is to say, when I was both in great distress and suffering from cognitive impairment) I bought no fewer than 10 different supplements. They all did nothing.
Most agree that only proven cure for many post-Covid symptoms is extended bedrest. It is a blessing that, thanks to my subscribers on various platforms, who have been very understanding, I’ve been able to take the time I need to return to some state of functionality. Most people do not have that privilege, and I don’t take it for granted.
While the literature is alarming, none of this has been definitively proved by science. It is true that preliminary links are opening up between COVID and cancer, blood clots, and neurological damage, however, it is still important to use one’s science hat and remember that COVID is a new disease and that most studies have not been meaningfully reproduced. One must remember to check the quality of the research, the journal it’s published in and the acknowledgement that anecdotal evidence can’t be treated as scientific fact. I remind myself of this every day so as to avoid collapsing into terror and despair.
This is one of the more curious phenomena in my adventure with long covid, the double bind between wanting to avoid getting ME/CFS (if that is even possible, it might just be how the virus expresses itself in certain bodies vs others) and assuming the ME/CFS subtype as the default, and with it, that all fatigue is post-exertional malaise, the hallmark symptom of ME. Some people with other subtypes, such as mine (neuro long covid), never start getting better until they start getting up and being in the world again. Some, like those with POTS, can get better with strict exercise regimens that help the heart pump blood throughout the body. I did real harm to my body, from deconditioning to becoming sick from cumin supplementation to begging my psych for more Ativan because I read it could prevent crashes all because I’d been convinced I had an illness I didn’t have. I know this is a touchy subject, but I have to put this out there.
Sending hugs.