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Disease and Deception

The rise of Munchausen by Internet syndrome is inseparable from the spread of online subcultures that valorize disability.

· 12 min read
Disease and Deception

Chronic headaches were only part of Chris’s troubles. By the age of 15, he’d already endured a short lifetime of misery. The physical abuse he’d suffered at the hands of an estranged father had resulted in a seizure disorder and intractable migraines, on top of his hemophilia. His brother had died of AIDS. His deaf mother and alcoholic stepfather refused to support his academic career (he was a fourth-year medical student), forcing him to skateboard three miles to classes every day. He spent his nights working as a drummer, using his earnings to pay for his medication.

Despite this Job-like litany of affliction and suffering, Chris appeared to be mature, sensitive, insightful. But he was lying—about his migraines, about med school, about everything. “Chris” existed only online, created by a patient with Munchausen by Internet syndrome (MBI). MBI isn’t an official diagnosis. It was first introduced into the literature by psychologist Marc Feldman in a 2000 paper that described this case and three others, and laid out the core features of this 21st-century condition.

People with Munchausen syndrome (known as factitious disorder in psychiatric nomenclature) feign, induce, or exaggerate symptoms of illness. Those with MBI do so online. By Feldman’s account, a typical MBI patient enters an online support group claiming to have a serious illness—often cancer, but not always. Other group members, having no reason to doubt this claim, welcome the new arrival with sympathy and condolences. Gradually, the faker’s story becomes more elaborate, arousing suspicion and leading eventually to exposure. The discovery of betrayal tends to sour the group’s atmosphere even after the faker has gone. And there is nothing to stop that person from migrating elsewhere on the Internet and beginning a new cycle of deception.

In the years since Feldman’s paper appeared, the Internet has evolved and so has MBI. Some cases continue to fit the modus operandi Feldman described—a user joins Facebook groups or forums and concocts dramatic tales of sickness and strife, ostensibly supported by photos borrowed from elsewhere on the Internet. Illness deception on Instagram and TikTok, however, requires more creativity. In the 6.1 billion #chronicillness videos, privacy is a thing of the past: users share their symptoms in real time, list diagnoses in their bios, and livestream from hospital rooms. Determining whether or not these accounts are exaggerated or fabricated requires a time-consuming search of the user’s posts in search of discrepancies and fakery. Is that a feeding tube in her nose or just an iPhone charger? Does that photo of a heart monitor look identical to the one she posted last week? Are her eyes swollen from allergies, or is she hungover?

These are questions that interest members of the Reddit page Illness Fakers (IF). IF describes itself as a “call-out, research and educational subreddit … here to address the fact that people who feign, exaggerate or even induce medical symptoms, conditions and complications do exist...and, directly or indirectly, they are hurting the chronic illness community at large.” The influencers discussed on this forum are referred to as “subjects” or “munchies,” and they lead complex, medically inexplicable lives. They chase rare diagnoses and seek out drastic treatments, reveling in their sickness. Current subjects include a YouTuber who videos herself antagonizing customers and fainting in Walmart; a 20-something-year-old wellness influencer who swears by medical marijuana and posts about her bowel habits; an actress-turned-“professional patient” who twerks while receiving blood transfusions; and a teenager who wears crop tops to show off her feeding tubes.

Beyond the gossip and speculation that such antics invariably inspire lie some interesting questions that this article will attempt to disentangle. What do sick people owe to—and what are they owed from—society? How does an online subculture that valorizes illness incentivize exaggeration and deceit? And if subjects are really faking, is there any hope of recovery?

A prototypical IF subject is a woman in her 20s or 30s. Her “journey” might begin with a diagnosis of Ehlers-Danlos syndrome, a group of inherited disorders affecting connective tissue. Or postural orthostatic tachycardia syndrome, an autonomic disorder characterized by fainting and poor circulation, among other symptoms. Or digestive issues due to Crohn’s or gastroparesis. Or chronic Lyme disease, a controversial diagnosis which remains disputed. She takes to the Internet to document her sickness, and people are quickly sucked into her story. Soon, she has a new set of symptoms, a new sickness, a new subplot. As one condition improves, another worsens. She accumulates medical accessories: feeding tubes, IVs, braces, crutches. She’s delighted with these, like a kid given new toys. She looks forward to invasive surgeries and posts selfies from her hospital bed.

But then the contradictions start to pile up. She can’t walk on her own, but she can stand and do TikTok dances. Her stomach is paralyzed and she can’t eat, but she posts pictures of fast food (#lunch!). She announces that she has seizures or migraines or even cancer, but a few days later, she stops talking about this new condition and never mentions it again. In the course of a week, she is diagnosed with a new illness and undergoes the most intensive treatment possible. She’s bed-bound, except when she goes on vacation. And as her saga unfolds, skeptical Reddit sleuths screenshot her posts and prepare to convince the IF forum’s moderators that they’ve found a new subject.

Contrary to what its name might suggest, Illness Fakers doesn’t restrict itself to identifying whole-cloth fraud. Users typically concede that at least some of a subject’s claimed diagnoses are legitimate but suspect exaggeration. A subject might panic over a normal-looking bruise or devote a whole post to the decision to carry an EpiPen after breaking out in mild hives. She might present an unpleasant but manageable condition (inflammatory bowel disease, Ehlers-Danlos syndrome) as life-threatening. She might brag about the severity of her symptoms (“My doctor said I have the worst tachycardia he’s ever seen”) or display medical equipment and paraphernalia as if they were adornments and post selfies from an ambulance. Or she may appear to take a peculiar pride in her uniquely intractable conditions. One subject has the word “rare” tattooed on her arm. Finally, as a subject drifts towards the more serious end of the illness deception continuum, she may deliberately aggravate and even induce symptoms.

It’s difficult, of course, to prove any of this from a distance, but it’s also hard to suspend disbelief when someone claims that a nasogastric feeding tube just “fell out” or posts videos of herself cheerfully flouting post-op instructions. And mysterious tube complications are only the beginning. One woman, no longer an active IF subject and now relegated to forum lore, is rumored to have picked so much skin from her legs that both were eventually amputated. Another infamous former subject vlogged her way through “voluntarily stopping eating and drinking,” a decision that some terminally ill patients make to hasten their deaths. But this woman wasn’t terminally ill. Her ostensibly imminent demise never came, and she disappeared from the web, but not before collecting thousands of dollars in donations.

The similarities between MBI cases of the kind featured on IF and the signs of factitious disorder itemized in Kaplan and Sadock’s Concise Textbook of Clinical Psychiatry are too significant to ignore:

  1. “The course of the illness is atypical and does not follow the natural history of the presumed disease.” (Subjects’ ailments morph rapidly and mysteriously. Paralysis comes and goes at random.)
  2. “The magnitude of symptoms consistently exceeds objective pathology.” (A “munchie” is bed-bound by a shoulder injury.)
  3. “The patient might eagerly agree to or request invasive medical procedures or surgery.” (Immediately after a condition is diagnosed, a subject rejects the prospect of lifestyle changes or medication and seeks out major surgery.)
  4. “Near-fatal bouts of illness alternate with miraculous recoveries.” (Subjects report sepsis or anaphylaxis one day and are fine the next.)
  5. “The claims are fantastic, contradicted by subsequent posts, or flatly disproved.” (A subject is severely allergic to king-sized candy bars but can tolerate normal ones. Another can’t move her arms—except to take a selfie.)
  6. “There is feigned blitheness about crises that will predictably attract immediate attention.” (“Just got admitted for sepsis,” beams a TikToker, waiting for the likes to roll in.)
  7. “A remarkable number of tests, consultations, and medical and surgical treatments have been done to little or no avail.” (Despite seemingly infinite treatments and procedures, subjects remain incapacitated by illness—and apparently untroubled by their predicament.)

Naturally, these antics invite incredulity, exasperation, and scorn on IF. Each subject draws a unique blend of specific criticisms, but the overarching complaint is that subjects are abusing an implicit contract that governs society’s treatment of the sick. Ideally, we compensate for individuals’ illness by providing accommodations or financial support, exempting them from usual responsibilities, and offering sympathy and attention. Subjects, IF users believe, take more of these resources than they’re owed, leaving less for those in true need.

Source: Kaplan and Sadock’s Concise Textbook of Clinical Psychiatry, Twelfth Edition, by Robert Boland and Marcia Verduin.

In some cases, it’s easy to quantify exactly what subjects are taking from this abstract contract—for instance, when they share links to their Venmo accounts and GoFundMe pages, asking for help to pay for groceries, clothes, rent, medication, feeding tube supplies. (Commenters who ask why insurance doesn’t cover these are immediately blocked.) One IF subject, a TikToker in her early 20s, amassed 1.5 million views on a video with the following caption:

My body is shutting down. MRSA is everywhere there isn’t much more to do. I’m terrified. Breathing is hard and pain is unbearable. I’m in and out of consciousness but I want you guys to know how much you mean to me and thank you for the gifts from Amazon wish list, make my day [sic] so much better.

Over the past year and a half, she’s repeated iterations of this post (“I’m on the brink of death; please send gifts”) multiple times. As of this writing, she is still very much alive and continuing to drop hints about the wish list (#donotresuscitate).

Other subjects don’t ask for money, but in Redditors’ minds, they do take more than they deserve—more attention, more likes, more sympathy, more healthcare, more scarce medical supplies, more accommodations, more kindness. Forum members worry about the emotional damage that factitious disorder inflicts, which some have experienced firsthand. “Growing up we always thought my mom was a hypochondriac. I am now almost certain she actually is a munchie,” writes one user on a thread for “those directly impacted by MBI.” “I’m so tired of her bs her behavior is like a cancer on my family. I have had such bad anxiety and lost sleep over her recent ‘psychotic break’. Previously it’s been cancer, thyroid problems, candida, connective tissue problems etc etc etc…She told me she was going to die when I was in grade school and was measured for a damn coffin.”

The comment section is filled with stories like this, about “munchies” imitating family members’ symptoms of cancer, lying about uterine cysts, or calling 911 hundreds of times. For such users, the debates on the Illness Fakers forum are intensely personal. Others have a stake in it through their own experience of disability and are frustrated to see debilitating diseases treated like fashion accessories. But however legitimate IF users’ criticisms may be, it’s not obvious to me that fighting the fakers helps them.

I’ve watched subjects take plausible steps toward a healthier life—starting up new activities or going to the gym or paying less attention to their illness and more to their job—only for commenters on Reddit to disparage their efforts. Such a response is not only counterproductive but indicates bad faith. On the other hand, some subjects do simply drop out of the forum discussion once they stop posting about illness, and some forum skepticism appears to be vindicated—occasionally a subject will suddenly pivot from her new healthy lifestyle back to writing lengthy, self-aggrandizing posts about her uniquely severe illness and Sisyphean struggles.

The evolution of Internet illness deception, particularly on sites like TikTok and Instagram, is inseparable from blossoming online subcultures that valorize disability. Participants, mostly chronically ill teenagers and young women, call themselves “spoonies”—a reference to a 2003 blog post that used spoons as an analogy for energy. Healthy people have a lot; sick people don’t.

This simple metaphor gave birth to an empire. That users with disabilities find support and comfort in online communities is not an issue. The problem is that some take it too far, glamorizing illness and making it seem interesting and desirable. A diagnosis provides access to an exclusive club with special hashtags and plush mascots and awareness days devoted to your existence. Making TikToks about life is boring. Making TikToks about life with #chronicillness is inspiring.

Performing disability online has become a lifestyle choice and a competition. Last month, an article by journalist Suzy Weiss offered a rare, honest look into the dark side of the spoonie world. Morgan Cooper, the young woman profiled, found community on Instagram and YouTube, but her new friends also made her sicker. She envied Instagrammers with tens of thousands of followers and brand sponsorships and multiple feeding tubes. It took an organized intervention to cut her off, after which she finally began to recover.

Cooper’s story might sound familiar to anyone who’s visited a “pro-anorexia” (or “pro-ana”) site. Like spoonies, pro-ana users compete to be thinnest and sickest. But instead of medications, diagnoses, and feeding tubes, they compare notes on calorie counts, exercise regimens, and thigh gaps. The photos of emaciated torsos and stick-thin limbs that populate spoonie Instagram posts could easily show up on a pro-ana forum, just with a different caption. And in both worlds, feeding tubes, hospitalizations, ambulance rides, and dangerously low heart rates are signs of success, badges of honor.

The similarities between the pro-ana and spoonie subcultures are a frequent topic of discussion on Illness Fakers. Many subjects have a history of eating disorders that develop into somatic complaints. Subjects insist that they’re in recovery, that they want to eat but physically can’t. They use feeding tubes to avoid food or to drain it from their stomachs before it can digest—a high-tech equivalent of self-induced vomiting. One subject even teaches her followers how to do this in a TikTok video. But while a tutorial on self-induced vomiting would surely be taken down in a heartbeat, eating-disorder content masquerading as disability awareness gets to stay–yet another item in the complex web of incentives driving online illness deception.

This incongruence is also symptomatic of the double standards governing Internet illness discourse, where being “pro” certain conditions (anorexia, alcoholism) is heavily stigmatized, but glorifying others is encouraged. Even the most tentative suggestion that some “disability positivity” may go too far risks accusations of ableism and immediately getting shut down. BBC journalists inadvertently discovered this last year with the release of a documentary special titled Sickness and Lies, featuring interviews with an IF moderator and several subjects (forum users subsequently contested some of the documentary’s claims about IF).

Though the program offered a balanced look at the issue and came down squarely against Illness Fakers, it nonetheless drew outrage from online disability activists, who called it toxic, stigmatizing, and harmful. Remarkably, the authors of these articles seem to be sincerely convinced that illness deception is not merely rare, but nonexistent. One even speculated that the documentary’s presenter, who has spinal muscular atrophy, is unable to feel compassion for people with invisible conditions. Another wondered rhetorically, “Who gives anybody the right to decide who is faking and who isn’t?” A blogger called the Kinky Autistic pointedly added that “the recent phenomenon of ‘Munchausen’s by Internet’ … was invented by a white man.”

These are standard reactions to discussion of social media MBI: disbelief, anger, vitriol. Thanks to this taboo, Illness Fakers is one of the only places online where these discussions can be had, unless one is willing to venture into unregulated forums like Kiwi Farms and LOLcow, where users dox “munchies” and take bets on when they’ll die. This is the most compelling argument that my research has turned up: though Illness Fakers is flawed, it’s better than the alternatives of hate-filled forums and activist denial.

Currently, there are no evidence-based treatments for factitious disorder. Most of the literature consists of case reports, offering little in the way of generalizable findings or clinical guidance. Overall, the prognosis for patients is poor. Many flee hospitals or clinics upon being confronted, precluding follow-up. A sizable portion die of self-inflicted injury or infection. Those who attempt to find their way out of the sickness face a difficult task. Getting better means relinquishing an identity that the online world has deemed inspiring. It means letting go of precious care and attention, retreating from the safety of doctors’ offices and hospitals, abandoning what might be a person’s only story.

But what if recovery were a plot twist, not a conclusion? Whether you trust them or doubt them, love them or hate them, there’s no denying that some of the Illness Fakers’ subjects are accomplished storytellers. Indeed, their sagas are so compelling that even as Redditors attempt to pick them apart, they can’t resist becoming absorbed. So what if subjects put these skills to better use, shifting their focus from the illnesses they don’t have to the one they do?

What would attract more fascination than the diary of a recovering munchie? And where better to write it than on Reddit? As a gathering place for users fascinated by factitious disorder, and one of the few places online where spoonie culture can be criticized in good faith, Illness Fakers is uniquely positioned to solve the problems it has identified. Now that would be inspiring.

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