In July of 2022, a woman we’ll call F. logged onto Instagram and posted a selfie from the hospital. “Just been told I’m on life support for my blood pressure,” she wrote, tagging the post with various medical terms and conditions: #gastroparesis, #addisonsdisease, #pancreatitis, #fullbowelobstruction, and even #lifesupport. Three days later, she said she was out of the I.C.U. but still struggling. By September, she was dead.
A scroll through F.’s Instagram profile reveals a mix of selfies, dog pictures, and inspirational quotes. She was alternately crushed and defiant. “Chronic pancreatitis you have taken so much from me these last months and there have been moments that I have no longer wanted to live but I will be not let you win even with pain and tears in my eyes I still want my life,” she wrote in April 2022. A few days later, she had taken a turn for the worse: “I really don’t know how much longer I can hold on anymore.” Like a lot of sick people, she apparently used Instagram as a way of connecting with others in her situation, building a virtual community of fellow sufferers who commented things like “stay strong” and offered their prayers.
F. had become a subject on another virtual community, the subreddit r/illnessfakers, which also includes many chronically ill users (or so they claim), but is dedicated to unmasking the supposedly sick for “lying, feigning or exaggerating illnesses and medical crises for attention and/or profit.” Months before her death, she had become one of the group’s subjects. “She’s doing all this to her self,” went one authoritative declaration. “She was never in ICU on life support. That’s just her fantasy.” In a different thread, another user snarked, “For someone who is really suffering 24/7, she really takes the time to add a lot of hashtags. She should have added #INeedAttention.” When F. died, they appeared unfazed. “She was genuinely striving to be the sooper sick, but she did it to herself,” a user wrote. “Unfortunately this girl met an end that she designed.”
Like the TikTok and Instagram influencers they despise, the users of r/illnessfakers seek to raise awareness of what they consider to be a dangerous, underdiagnosed disease: factitious disorder, more popularly known as Munchausen’s syndrome, or, in the subredditors’ lingo, munching. They believe we live in the age of Munchausen’s: people are willing, quite literally, to die for attention, and all that stands between them and their goal is a brave crew of vigilante detectives. These amateur investigators style themselves as scientists, policemen, and doctors all in one. And they believe — or they claim, or they claim to believe — that they are, sincerely, here to help.
Let’s be clear: F. was, as far as I know, a real person, who was really sick, and who really died. I have no reason to believe she was at any time a fraud, and I do not believe that she was. Though I have read many forum posts promising that evidence of her depravity was behind the next hyperlink, all she ever seemed to do was post online about being in pain.
Even outside forums for obsessives, most of us want to believe there’s a bright line between the really sick and the fake sick, between the sincere expression of suffering and the over-the-top, between the patient in need and the attention seeker. But I am not so sure that such a line exists. I am “really sick” — not that I intend to provide a doctor’s note; you’ll just have to trust me — and the sicker I have become, the more one thing has become clear to me: every sick person is, in some way, an illness faker.
Once upon a time — it was 2019 — I did not feel well. I didn’t know why. About once a month, I experienced extreme pain that I could mostly relieve only by forcing myself to throw up. I saw my doctor. I saw a gastroenterologist. I told him, truthfully, that when I was sick, I felt like I was being snapped in half. My primary care doctor had me cut out dairy and gluten; the gastroenterologist had me try a low-FODMAP diet, which prohibits, among other things, onions. I had a colonoscopy. I tried intermittent fasting and four different medications. Things would help for a little bit, and then they would stop helping. All the tests came back normal.
Eventually, I received a diagnosis: irritable bowel syndrome. I knew enough to know that this meant I was being written off. Though my doctor was willing to run other tests if I wanted him to, as far as his own ideas went, he had hit a dead end. IBS is what’s known as a “functional” disorder, in which nothing can be detected on standard tests like MRIs and blood work, even though the patient displays clear and consistent distress. (Other functional disorders include fibromyalgia and chronic fatigue syndrome.)
Another way of putting it is that functional disorders tend to be popularly regarded as — well — fake. Chronic fatigue has been nicknamed “yuppie flu” for a reason. If doctors can’t find a problem, the reasoning goes, then there probably isn’t one. And the line between a “functional disorder” and the simply psychosomatic is thin. In her book on treating people with such disorders, It’s All In Your Head, neurologist Suzanne O’Sullivan notes that IBS is considered by some “a disorder of perception.” Sufferers might be “overly observant of every internal sensation and change in their bowel motions.” By perceiving their symptoms, they conjure them into being. “They are reacting to symptoms that others might dismiss, and those reactions serve to heighten the symptoms and awareness of them,” she writes.
Here’s the thing: that my problem might be psychosomatic made sense. If you’d asked me what my big fear was, I would have said I was afraid my doctor would stop believing me. But the truth is, as the evidence that I was just fine piled up, I had stopped believing me. Even when I found myself curled up on my bathroom floor, I was still wondering if this was real, or a kind of tantrum I was throwing at myself. I had nagging questions: didn’t I drink too much? Wasn’t my diet subpar? And didn’t these episodes, if I was honest, occur suspiciously close to big events (a flight home for Christmas, a deadline, moving day)? I didn’t learn to ask myself these questions from browsing subreddits like r/illnessfakers. They seemed inherent in my position. I discovered the subreddit in the first place because I was searching reddit for gut disorders I should get tested for — which is, incidentally, classic faker behavior.
When told that there are forums where people accuse complete strangers of lying about their suffering, a normal person — I have found — reacts with disgust. What kind of vicious losers spend their time like this? (Follow-up question: by the way, why are you spending your time like this?) But though its language is offensive, the sentiment expressed on r/illnessfakers isn’t so out of the ordinary. It’s rare to accuse people of outright lying about their health, but believing that they are telling the truth (to others or to themselves) is another matter.
In recent years, mysterious, chronic ailments — chronic Lyme, chronic fatigue, fibromyalgia, and a whole host of auto-immune diseases — have become household names. Hot girls have IBS (or so the meme goes), and singers as varied as Lady Gaga, Selena Gomez, and Shania Twain are open about their struggles with chronic illness. As the visibility of these sicknesses has seemed to increase, so too has popular skepticism — ranging from casual dismissal to outright denial. In The Atlantic, Helen Lewis diagnosed a Tourette’s-esque set of symptoms commonly posted about by teens on TikTok as a “mass psychogenic illness” spreading through the platform. Over on the Substack Common Sense (now the website The Free Press), Suzy Weiss wrote a much-shared piece about chronically ill posters called “spoonies,” who, she felt, seemed to revel in being sick and encourage one another to get sicker.
The rise of long Covid has fueled yet more skepticism. An article by Jeff Wise for New York Magazine recommending that long Covid be treated through cognitive behavioral therapy and exercise was widely interpreted as casting doubt on the newly minted chronically ill. In a controversial essay for The New Republic, “We Might Have Long Covid All Wrong,” Natalie Shure argued that the illness should be understood as a kind of functional disorder: “A chronic illness that appeared to be triggered by viral infection could just as easily have been triggered by the trauma of the pandemic itself.” Cool and compassionate, Shure sounds like somebody who really does want to help you, if only you could understand what the problem really is.
Shure’s piece is emblematic of a broader, more progressive, more compassionate approach to calling the reality of illness into question: no moral blame is assigned, and great pains are taken to point out that just because something’s “in your head” doesn’t mean it isn’t real. It’s just that all the things you might have considered signs of your conscientiousness — tracking your symptoms, monitoring your diet, finding other patients for mutual support — were actually ways of feeding your disease.
To other people, this line of argument might sound very familiar, something almost worse than simply not being believed. It’s the tone of a doctor who starts to ask you questions you already recognize as the diagnostic criteria for depression or anxiety. The doctor isn’t dismissive. He (or she) believes you feel all the things you feel. You just don’t understand those feelings. And as you insist on your version of events, you feel increasingly conscious of how much more convincing the doctor’s story is. The weird truth is that I still find the psychosomatic explanation of my own troubles vastly more satisfying than what my illness turned out to be. It provides a bad guy: me.
Illness is a matter of testimony. You tell somebody else — generally, somebody who has more degrees than you — how you feel, and they, ideally, have the ability to recognize in your testimony something you lack the expertise to identify. And often the body itself testifies: a doctor runs a scan or tests your blood and gets an answer. You have information, and the doctors have understanding. But this dynamic, in practice, is rarely so simple. Illness is also a social negotiation between what you have to say and what your doctor is willing to hear — and the diagnosis that results from this dynamic isn’t exactly your illness, but a mutually agreed-upon fiction.
As the only person in a position to testify about how he or she feels, the patient is the victim, neutral witness, and scene of the crime. Which role to play and when and how, what to emphasize and what to downplay — these are all decisions with real consequences. Something I’ve been amused to note, when reading through my own medical records, is that whenever I’ve answered “no” to a doctor’s question, what’s been written down is “patient denies.” This is understandable — people lie, or misunderstand a question, or remember something later — but it makes clear that a patient’s testimony is always somewhat suspect.
Sitting and talking to a doctor, a patient might make a point of maintaining a calm affect, downplaying or dismissing symptoms, just to get the feeling of being on the same team as the doctor: Yeah, I don’t trust her either — that whiner. This behavior is the instinctual and rational response to somebody who has a lot of power to help or hurt. Patients establish that they are — or can be — good, rational, and believable. Divided internally, the sick person gangs up on an imagined, pathetic version of himself: the bad patient. But the bad patient is also the one who is sick: he carries all the stigma and the suffering. It’s this bifurcation, the way in which sick people must learn to manipulate doctors, that makes them fakers — even of illnesses they legitimately have.
Overcoming the bad patient isn’t as simple a process as disowning your internal self-hatred. Patients are manipulative for very good reasons, particularly when it comes to things like pain, where the treatment is heavily rationed and stigmatized. Women are more likely to get written off as attention-seeking than men; black people are more likely to be neglected than white people. The ubiquitous pain scale (from one to ten) is understood to be subjective — sort of. The practical fact is that patients have to figure out not what these numbers mean in their own experience, but what the numbers mean to their doctors and nurses. Even on r/illnessfakers, users recognize that from time to time it’s necessary to manage doctors. On one thread, several posters confessed that they, too, had sometimes been guilty of faking — or of being “OTT” (over the top), playing up legitimate symptoms. One vented, “Like I know I have to say I’m a 6 on the pain scale when I’m actually a 4 because you’re gonna send me home to die.” She went on: “I can’t tell you when I’m genuinely an 8 because now you think I’m drug seeking even though the opioid epidemic completely skipped Black people because y’all refused to prescribe us pain meds when we actually needed them.”
This admission, and others like it, were met with surprising levels of sympathy. “It can be rough finding the line between dealing with something difficult and being OTT at the end of the day,” another user commented elsewhere. “Most medical ‘professionals’ assume everyone there is faking,” a user lamented in a more recent thread, apparently without a sense of irony. “It’s awful.” In a third thread, another user, who claimed to be a nurse, demonstrated the veracity of this claim. She wrote that whenever a patient who seemed “totally settled” reported high pain scores, her “favourite thing” was to respond, “Oh okay, so if a limb was cut off you wouldn’t be in worse pain?”
The distrust built into the exam-room dynamic is something neither patient nor doctor can ignore. Like the user who had to tweak her pain scores, many sick people have to be a little bit of a bad patient and good patient at the same time — a squeaky wheel. “I’m just so tired of always feeling like a criminal when I go to the doctor,” the poster wrote, “and it’s hard for me to reconcile that my OTTness was my way of navigating this system, but I just straight up feel like a liar.”
As for me, I went on as I was until the spring of 2022. I had stretches where it seemed like I was completely fine. I put my experiences down to the mysteries of the human body. Then I went to a party, and by the time I got back, I was feeling miserable again. Once that week I tried to walk to my street corner, only to turn around, dizzy and sick. I started to plan days around not eating. One night in June, when the pain was extreme, when I kept on vomiting, I called an ambulance.
I learned what was wrong with me — something neither functional nor mysterious. I had gallstones, a very common ailment, easily dealt with by simply removing the gallbladder. This is probably what I had been suffering from all along, though nobody ever said the word “gallstones” to me that I can recall, nor do I remember it showing up as a possibility in any of my online diagnosis-hunting expeditions. In any case, gallstones were no longer my biggest problem. Without treatment, I had developed necrotizing pancreatitis, which was much more serious: parts of my pancreas were dying.
Suddenly, it didn’t matter how I felt about things. In fact, none of it had ever mattered: the self-doubt, the dieting, the medicines, the supplements, going to the doctor. It had all amounted to kicking the can down the road. A weekend hospital stay stretched out to a week, then to two. My prognosis was unclear.
Since then, I’ve sometimes had a weird wish: that I’d recorded my own voice at the time, just to know what being in that much pain sounds like. It’s with a similar interest that I’ve since read the notes from the doctor who first examined me in the E.R., a person I can’t remember speaking to, who wrote that my mood was normal, my pain moderate, and that I was not “ill-appearing.” This version of me in crisis: what did she look and sound like? Was she so good at being good, at looking reasonable to a doctor, that, even then, she seemed fine?
This was how I found F., incidentally: because she had pancreatitis, too. As I continued to go in and out of the hospital thanks to further complications, she was dying. I didn’t know any of that until later. When I read her Instagram posts now, knowing how it feels, they strike me as very brave.
In recent years, a burgeoning group of memoirists, influencers, and ordinary posters on one platform or another have taken up the task of testimony. There is now a tall bookshelf and an endless feed of content meant to educate the general public on what it is like to have a chronic, often unrecognized disease. In the course of writing this essay, I have read memoirs about either having or observing Crohn’s, extreme sensitivity to light, epilepsy, pancreatitis, mold toxicity, chronic fatigue disorder, chronic inflammatory demyelinating polyneuropathy, chronic Lyme, Morgellons, and even Munchausen’s itself. At this point, I am familiar with their often identical narrative beats: the promising young life, the hidden danger, the precipitous decline. The rapid exhaustion of mainstream medical resources, the turn to community support. There are many ways to be healthy, just one way to be sick.
Sometimes an illness memoir is a way of arguing for the legitimacy of an entire disease. Morgellons, a condition recognized as legitimate by basically nobody, sits uneasily next to the not-legit-but-more-legit diagnoses of chronic Lyme and mold toxicity, which are popular in alternative medicine without having official mainstream recognition. These memoirs strive to counteract the disbelief of individual doctors by appealing to a wider audience: surely all this suffering couldn’t be a normal life of feeling tired, could it?
Most of these books are written by good patients. But all of them worry about how they might find themselves demoted to crank. In her best-selling 2021 memoir The Invisible Kingdom, writer Meghan O’Rourke recounts her fear of becoming a “heartsink patient” who “seems to ask too much.” Among the things she learns not to do: list all her symptoms, mention having seen other doctors, or “show up prepared with prior medical records.” A doctor might feel like a detective, expertly and even kindly investigating the crime scene of your body, or they might seem like the irritated prosecutor, leaping on slips you hadn’t realized you’d made.
Like all witnesses, patients have their credibility assessed in the familiar ways: by gender, race, class. In The Deep Places, a memoir of chronic Lyme, New York Times columnist Ross Douthat acknowledges that his bona fides as an established, successful, conservative white man will get people to take him seriously. Sure, you associate the chronically ill with people like his mother, who spent his childhood going to “Pentecostalist healing services where people spoke in tongues” and “chiropractors and naturopaths and other purveyors of holistic medicine,” but it can happen to people like him, too.
O’Rourke and Douthat are lucky to ultimately find sympathetic doctors. Even if these doctors don’t necessarily think that chronic Lyme, say, is real, they believe in the suffering of the patients before them. But, as chronicles like Douthat’s and O’Rourke’s attest, sympathy is often all they have to offer. If you’re stuck in a gray area that leaves you incapacitated for no single reason, the very structure of medical science, in which specialists are divided from each other and don’t necessarily operate with a holistic understanding of your condition, can work against you. Patients, in turn, are often left looking for help from one another, which isn’t easy to do. You only have to dip a toe into the illness internet to learn that a lot of its members aren’t reliable.
“I read online patient boards, hoping to learn something useful from my fellow patients, but I was put off by all the ridiculous treatments people discussed seriously,” science journalist Julie Rehmeyer writes in her memoir of mysterious illness Through the Shadowlands. “A woman wore magnets in her underwear to balance her hormones; a man was shining a red light up his nose; someone even contemplated drinking cow urine.” Entering this world — not to mention writing about it — requires a particularly delicate highwire act: conveying your real suffering but also your fundamental sanity. And, to some degree, your superiority over your fellow sufferers. As Douthat writes, “I tried to distinguish myself from those other sick people, more desperate than I was, who were trying truly crazy things while I was proceeding sensibly and moderately along the path to health.”
But ultimately, everybody tries something crazy. Rehmeyer, following advice from a particularly insane-seeming forum poster, ditches almost all her possessions and moves to Death Valley to see if she suffers from a sensitivity to mold. (It works.) Against the wishes of his wife, Douthat purchases a “Rife machine,” a device that supposedly uses electromagnetic frequencies to kill diseased cells. (It works, too.) O’Rourke describes trying out a potentially dangerous procedure called chelation, in which “a synthetic amino acid is injected into the body to help draw heavy metals out of the tissues.” (It makes her smell like garlic.) Rhetorically, these admissions convey the desperation of the writers’ situations, while stopping short of actively advocating for the treatments they underwent. As Douthat writes, “My descriptions of symptoms varied so much, the explanations of how the infection persisted sounded so baroque, my mood swings were so palpable and my desperation so intense as to make me seem the most unreliable of narrators where my own condition was concerned.”
Many of the memoirs I read acknowledge the difficulties and dishonesties inherent in the patient position, but acknowledgement is not the same as a way out. They contain sweeping, systemic indictments: everything is making you sick. The medical system that divides the body into fictional specialties, the food that’s ruining your gut biome, the stress of contemporary life, the mold you never knew was there. This depersonalizing of the subject matter is also a bid toward legitimacy: these writers are not asking the world to slow down and take note of their particular suffering; they are presenting themselves as symptoms of a larger disease, a sickness that threatens everyone. In the introduction to The Invisible Kingdom, O’Rourke argues that we are in “a silent epidemic of chronic illnesses that are often marginalized, contested, or even unrecognized.” She writes, “If every age has its representative signature disease, I contend that this type of chronic illness is ours.”
Reading these books, I found myself wondering what would happen if their authors found themselves in a situation like mine: discovering that the roots of their troubles actually weren’t mysterious. What if they, too, were suddenly confronted with the possibility that nothing they had done mattered? O’Rourke notes that alternative medicine is “in thrall to one of the most powerful contemporary Western delusions,” that “we can control the outcomes of our lives, in this case through self-purification.” Yet, like so many things involving serious illness, this delusion can be recognized but not entirely shaken.
In his own memoir of chronic illness, Teach Us To Sit Still, the novelist Tim Parks remembers reading a medical booklet that described people with one of his conditions as “restless, worrisome, dissatisfied individuals who drag their miseries around from one doctor to the next in search of a cure they never find.” It cautions the doctor to “be careful not to let himself be demoralized by these people and their intractable pathologies.”
By the time I read this, I had spent quite a lot of time in the hospital, and met patients who ran the misery gamut, from a cheery, laid-back grandmother to an angry woman who would start to call for the nurse the moment he turned his attention to somebody else, then abuse him when he came over. And so reading this induced an instant grimace of recognition — of myself, certainly a person now doomed to drag my miseries around, but also of how I had felt about everybody else.
Most of the staff who handled all these miseries were kind, and when I think about certain nurses, I feel gratitude so intense I want to cry. Yet I still feel resentful, too; I still feel angry. Shouldn’t somebody have to pay for this? Somebody other than me? I can see how I could follow that thread somewhere dark; how I could end up scrutinizing and mocking the people online who remind me what being sick looks like, how all the other bad patients out there might become impossible to tolerate, much less believe.
The would-be detectives of r/illnessfakers are right: sick people are annoying. They are annoying to be around and they are certainly annoying to be. The subreddit pounces on subjects who come off as manipulative, embittered, and attention-seeking. But all of these negative adjectives also describe a lot of truly sick people, who are likely to have adapted to needing to get things, being ignored, and being neglected.
The glut of illness testimonies — the memoirs, the blogs, the TikToks — try to rescue all the bad patients by redeeming them: by showing how good they really are. One after another, they take the stand and present the evidence. See, they really do believe in science and avoid gluten and tell the truth. But one of the reasons witesses are coached on how to testify is that we judge truthfulness by many proxies, many of which may have nothing to do with the facts at all. People are backed into corners where the only way to communicate the truth may be to fudge the details: medicine is just one example. And people are also forced into circumstances where the real vagaries of their stories sound like lies, just as poorly localized pain or shifting symptoms make their victims sound dishonest.
In one sense, the good patients lie, maintaining the facade of normalcy and health, while the bad patients, by lashing out, tell the truth. The bad patients need the good patients to represent themselves — need the good patients’ sense of decorum, image, and control — but the good patients need the bad patients, too. The screamers, the whiners, the cranks. They blow their deadlines, flake on their friends, show up to events loudly explaining their food restrictions. They can’t go a minute without mentioning how sick they are. They make such a big deal out of everything, as if other people care. They’re sick without apologizing for it at every opportunity. I hate them, I envy them, and I wish that we could all, for a moment, let them — and me — be blissfully, totally annoying.
