At the height of summer last year, Sophie received an Instagram DM on her phone from an account she didn’t follow. “I’m going to make you disabled,” it read. With it came a photograph, one of her and her friends crossing the street. The photo suggested to Sophie — a 22-year-old who asked that her real name not be used — that not only did this stranger know where she lived, but they were watching her. The threat, and others like it that she’d been receiving for months, soon made her dread leaving the house. She did not know who the threats came from, but she knew where they likely got her name.
Since mid-2018, Sophie had been using her Instagram and TikTok accounts to chronicle her experience as an autistic woman living with Ehlers-Danlos syndrome (EDS). EDS is an inherited condition affecting connective tissue that causes a range of symptoms, from easily dislocated joints and hypermobility to fragile skin that splits easily and heals slowly. About a year after she started, a YouTuber who promotes themselves as a sort of Perez Hilton of influencer beef found her social media and ridiculed her looks over a 20-minute video that soon gained more than 1.5 million views.
Soon after, as viewers ridiculed Sophie on YouTube, screenshots of Instagram and TikTok posts about her illness began circulating on a subreddit called r/illnessfakersgonewild, a place for mostly unrestricted, sometimes unhinged accusations of medical deception. And the harassment had continued ever since: Everything Sophie posted became public fodder. Some comments were mild, in the grand scheme of things — “they do have very severe mental illness,” said one — but death and rape threats came in “uncountable numbers” says Sophie, and sympathetic-seeming Instagram followers befriended her with innocuous conversations, only for Sophie to discover they were mining for ammunition to share on forums.
“I’m supposedly faking every single aspect of my identity for some Instagram followers,” Sophie says.
Many people facing serious illnesses have used social media to find community, sympathy, and even crowdfunding for medical care. But as publicly sharing stories of personal medical battles has become more common, a handful of visible cases have turned out to be completely made up. Australian wellness blogger Belle Gibson, for instance, enjoyed everything that came with the influencer status she built after curing her brain cancer through diet and alternative therapies — an army of followers, lucrative book deals, the face of a popular mobile app — but in 2015 it was revealed that her story was fiction. British teenager Megan Bhari, who founded the charity Believe in Magic for terminally ill children in 2012, raised millions after relaying her experience of living with a brain tumor, gaining support from celebrities like One Direction and former British Prime Minister David Cameron. Bhari passed away in 2018 from heart failure, and it was later revealed her tumor did not exist.
For some onlookers, attempting to root out the “illness fakers” has become a favorite pastime. Communities of illness skeptics exist across dozens of forums, subreddits, and private Discord servers operating under varying levels of morality. Some participants claim to be chronically ill themselves or say they are medical professionals. But others say they’re drawn to questioning strangers’ illnesses in the same way they’re drawn to any other hobby: They find it fun.
These online vigilantes argue that they provide an important public service by outing scammers who may be manipulating other people’s generosity and support. Their targets, like Sophie, say that they’re coordinating harassment toward people who are already sick, and that it’s difficult, if not impossible, to diagnose a stranger’s medical condition via social media.
One of the biggest communities of people devoted to spotting “illness fakers” is the over 40,000 subscriber Reddit group r/illnessfakers, which was created in early 2018. The name is a slight misnomer, however, given the scope of what they discuss. Illness fakers, in a very literal sense, appear, but so do what the group calls “OTT Spoonies,” people who the community believe are ill in some way but exhibit over-the-top behavior in their portrayal of it and the extent of which their lives are affected by it.
One of the r/illnessfakers moderators, MBIresearch, says they are an anesthesiologist and believe the forum exists to fight against a culture of selling sorrow, where social media allows influencers to con their audience. “Malingerers thrive on an unconditional blanket of acceptance,” MBIresearch, who asked to remain anonymous, told OneZero. “If you dare to insinuate someone may be medically deceptive you are met with indignation, so people need a space to be able to discuss these topics without the condemnation that occurs on virtually every other internet space.”
MBIresearch sees the forum as a safe space for an important conversation. “We hear from those who’ve had their eyes opened by the cases we discuss or loved ones who identified a family member was engaging in toxic behaviors,” they say.
Other members have less high-minded explanations of the forum’s appeal. “I’m entertained by the constant performance of how ill these people believe they are,” says a regular follower of r/illnessfakers who wishes to remain anonymous. “It’s a balancing act. Is being entertained by the drama worth seeing their whining? It’s a morbid curiosity, like ‘how far are they going to go for attention today?’”
People have been faking illness for much longer than they’ve been posting about it on the internet. Coined in 1951 by a British endocrinologist named Richard Asher, Munchausen syndrome is a recognized, albeit poorly understood condition where someone feigns illness or deliberately produces symptoms of illness or illness itself in themselves. A more modern version, “Munchausen by Internet” was named in 2000 by clinical professor and leading Munchausen researcher Marc Feldman, MD, to describe cases in which a person utilizes social media to fabricate an online persona for themselves as an ill person.
The motive for faking an illness online can be to gain attention or sympathy from loved ones or strangers, desires exacerbated when social media allows anyone with an iPhone to secure “their 15 minutes of fame,” says N. Karen Thames, PsyD, a clinical psychologist and founder of chronic illness charity, Epic Together.
The forum r/illnessfakers has a long list of self-governed rules that attempt to keep discourse civil and harm to a minimum. New “subjects” — how the forum refers to people whose medical conditions they find dubious — must be older than 18 and have at least one social media account with more than 1,500 followers. Before subjects are eligible for discussion, moderators assess documented examples of alleged lies or inconsistencies. These are compiled into timelines, sometimes with spreadsheets documenting a subject’s social media or dated lists of alleged lies or discrepancies in their story. If there is not a substantial body of circumstantial evidence for a subject then they can’t be discussed, with moderators approving or denying each case.
Memes are banned — “Memes, while funny, can also be very hurtful and cross the line into harassment,” they say on their group Wiki — and subscribers, according to the forum’s rules, should also never contact sources — “touching the poo,” as it’s known.
But internet vigilantism has never exactly been airtight. Accusations are ultimately unprovable. “Everything we discuss is based on speculation only and we cannot ever know anything with 100% certainty,” emphasizes MBIresearch, but speculation can be harmful. Many chronic illness patients already spend years being misdiagnosed by doctors and disbelieved by their families in the real world. Should the same happen online?
“While I do not agree with people exaggerating illness I do not believe, under any circumstance, that any good comes out of publicly outing them,” says Thames. “We must ask ourselves, what good will come from this? If there is no positive change I don’t see the benefit of it at all. Publicly outing someone does nothing to empower us.”
In recent months, Sara Grace has become a regular subject on r/illnessfakers, known as “SGB” inside the group. Her Instagram audience is relatively small, around 5,000 followers, and she regularly shares updates on living with gastroparesis, a condition where the stomach cannot empty in the normal way, and other illnesses. Nearly every photo she shares from her California home is screenshotted and shared with the community, where even her sneezes cause outrage. (Reads one comment: “These photos they take of themselves with their eyes closed just kill me. I’ve done this to take a photo of me “sleeping” with my dog, and it’s really not easy to take! It is so deliberate.”)
“It’s easier to pick on people who open themselves up to criticism,” says Grace on why she believes she’s a popular target. “They believe I’m an attention-seeker. That I share too much personal information, too much blood, sweat, and tears, but in reality I’m just trying to be the person I needed when I first got sick.”
That “person she needed” is someone who shows that everyone’s experience with illness is different, that not everyone takes the same medication or heals in the same way. To the group, however, this is what makes her a target.
Grace avoids the forums where she appears daily. “When I put my phone down, their effect on my life stops completely,” she says with a defiant tone. “The group surfs in and out of my existence, it is what it is. I don’t care about that.” But not everything can be ignored with Airplane mode. Once, she made the mistake of sharing a photo on Instagram where a medicine bottle with her doctor’s surname written on it was visible. Shortly after, she says, strangers began calling her doctor in an attempt to disrupt her medication.
“A lot of things roll off my back but some things really stick with me,” she says. “These people spend their lives hunting down information about other people to make their lives worse. I don’t think I’ll ever really understand that.”
This type of behavior is not unique to the illness faker community, but a natural trait of when people gather online, says Markus Kaakinen, a postdoctoral researcher at the University of Helsinki who has studied the psychology behind group behavior and online hate.
From perceived injustices to deliberative trolling, individual motives tend to dictate the group norms of online communities. After reviewing r/illnessfakers, Kaakinen thinks that members may perceive themselves as revealers of the truth who share a common enemy. In this scenario, hostility is not only justified, but rewarded. “People are more likely to share hostile content if they feel that other members of the group appreciate it,” says Kaakinen. “Behavior that seems incomprehensible to an outsider’s eyes is logical and even noble from the group’s perspective.”
This is no more cruel than in r/munchpool, a death pool where users wagered on who, when, and how a chronic illness influencer would die. This gave rise to the term “pulling a Jaquie,” or dying after a dangerous and, they say, unnecessary procedure, named after a popular YouTuber known as Chronically Jaquie who passed away due to complications following an operation in 2019. Jaquie was, and on some forums remains, a source of ire, with many followers believing her death was the result of an operation she didn’t need gone wrong, a fatal case of Munchausen.
“The death pool had gone too far,” says the r/illnessfakers follower. “After learning about r/munchpool I questioned myself about why I’m exposing myself to more negativity in an already excessively negative world. The answer was entertainment.”
For targets of these communities, there are few options for fighting back. Petitions calling for r/illnessfakers and r/malingering to be removed have been unsuccessful, both in banning these groups and attracting popular support, and attempts to have posts removed are mostly ignored either by moderators and Reddit.
Reddit has cracked down on some of these communities — r/munchpool has now been deleted and r/illnessfakersgonewild has retreated to private groups. But r/illnessfakers remained.
That’s because if what is being discussed has already been shared on social media then the original posters are determined by Reddit’s guidelines as public figures. Reddit’s policy allows for the criticism of “public figures” and what they choose to share publicly, like they would a politician or pop star.
For Sophie, positive change came when she deleted her main social media accounts, and was deemed no longer worth talking about. “Someone said they found me boring. I hope they all share that sentiment and leave me alone,” she laughs.
Switching off your phone doesn’t solve everything, though, as I found out when I opened my laptop one Thursday afternoon to find I had inadvertently become a talking point on r/illnessfakers.
While writing this story, an interview source shared on Instagram that a U.K. journalist (me) was speaking with them on the topic of r/illnessfakers. The post was screenshotted and shared on the subreddit, becoming one of the most upvoted posts of the month as the group tried to decipher who I was over 200 comments with varying degrees of success.
The experience, a comparatively very tame grilling, was slightly unnerving, sometimes funny, but mostly surreal. At first, with little information and suspicion rife, members theorized I could be Piers Morgan writing an expose for the Daily Mail or an undercover private investigator hired by a target’s family to secretly assess their mental health. After my true identity was discovered, then came the question of my motives. Was I yet another person duped by the medical deceptive? Or had I come to expose them and vindicate this community of misunderstood truth seekers?
The answer was neither, really. Truth cannot be determined from afar, whether pieced together through social media posts or debated over hundreds of comments. But “truth” can come down to a single question, which in this world is one that ruins lives or exposes frauds, depending on who’s being asked. Who do you believe: the word of one public persona or 40,000 anonymous ones?