Insta_Illness

Munchausen by Internet: The Fraught World of Chronic Illness Influencers

r/IllnessFakers is committed to outing people faking their sickness on Instagram. But does anyone actually know the truth?

G-tubes and colostomy bags haven’t yet been given the mainstream “body positive” treatment, except in one corner of the internet: On Instagram, many chronically ill and disabled people are publicly documenting the dark, depressing and even gross aspects of their daily lives. But as with anyone who opens themselves up to the public, criticism is difficult to avoid, and because certain illnesses and disabilities can be invisible or unidentified, some people within the community are accused of faking. 

And maybe, some of them are. 

The subreddit r/IllnessFakers is devoted almost entirely to screenshots of Instagram posts from people the group has deemed to be faking. The group has more than 25,000 members and features a common cast of characters subjected to the majority of the speculation, whose lives and stories the members seem to know in detail. There is even a list of people whom the moderators “approve” discussing by name or other identifying details. 

Wheelchair, full leg brace, mask, kiddie bowling… definitely not trying to draw attention to herself. /s from illnessfakers

According to the rules section of the group, r/IllnessFakers servers as “a call-out, research and educational subreddit.” In a statement of purpose, they write, “We are 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 group frequently cites the term “Munchausen by Internet,” a term coined by Munchausen Syndrome expert Marc Feldman in 2000 “to describe an individual seeking attention by playing out a series of dramatic near-fatal illnesses and recoveries that increasingly strain credulity.”

Members of the subreddit justify identifying alleged fakers because these individuals have become “influencers in the online chronic illness community who are profiting off of their followers and exploiting their compassion for financial and emotional gain.” 

Anelise climbing on the window ledge while being treated at the hospital…no words for this one from illnessfakers

Of course, the term “influencer” is itself a nebulous term. In the broadest sense, an influencer is simply a person who influences another person in any capacity — on social media, the wider culture or both. More commonly these days, an influencer is a part of a digital marketing strategy, encouraging others to buy a product. Some of the people targeted by r/IllnessFakers have indeed received sponsorships, ranging from major corporations like CVS to small businesses selling adaptive clothing. Others may receive financial support in the form of GoFundMe’s or other fundraising efforts. But for many, the value in the community is purely emotional. 

It’s also worth noting that not everyone within the chronically ill or disabled Instagram world is accused of fraud. There are more than 2.6 million posts tagged #chronicillness on the app, with thousands of different people involved. Listing one’s illnesses in their Instagram bio is a common practice, while some state that they remain undiagnosed. Typically, those accused of faking are confined to the latter label and a handful of different illnesses. 

One massive issue emboldening both critics and fakers alike is the fact that many of the chronic illnesses cited really are challenging, if not impossible, to diagnose. There are dozens of broadly defined mystery diseases with murky symptoms and vague diagnostic requirements: Illnesses like Lyme disease, fibromyalgia, irritable bowel syndrome, multiple sclerosis and chronic fatigue syndrome all lack definitive tests or symptoms that would allow for 100 percent certainty in their diagnosis. As such, they’re difficult to either prove or refute, and it’s these conditions, as well as broad disorders like dysautonomia, that frequently appear on r/IllnessFakers.

It hardly seems like a coincidence, though, when considering the large number of “didn’t happen” dudes obsessively tracking their every statement, that the majority of people in the chronically ill Instagram community are women.

As pointed out by women’s health site SheKnows, women have historically been ignored in the medical field when suffering from mysterious or invisible illnesses — in decades past, lupus and rheumatoid arthritis were considered psychological. While there has been an increase in research identifying the validity of these illnesses, the practice of labeling sick women as “crazy” continues today. 

r/IllnessFakers is thus emblematic of the contemporary problems of sickness, gender and the visibility of each. It seems undeniably toxic for a group to devote so much time and energy to calling out and picking apart the posts of people who may genuinely be suffering from a puzzle of life-altering symptoms, potentially ignored or underestimated by medical professionals because of their gender. Still, it’s arguably even more toxic for people to exploit the sympathy of others on Instagram, affirmed by this history of murky gender politics and sickness. 

Indeed, everyone involved in this situation seems to be truly sick in some capacity –– from genuine bodily illnesses, from Munchausen by Internet, from endlessly reinforced online misogyny or from the social world we’ve created — one that allows for pain and suffering to be manipulated for gain.