‘Sickfluencers’: Why Are People Faking Illnesses on TikTok?

On the 7th of November 2021, Hope Otto, a 20-something former emergency medical technician from New York state, made an emotional Instagram post from a hospital bed while wearing a medical gown. In the self-shot video, she told her followers that this would be her last post as she was preparing to die, having given up in her battle against Ehlers-Danlos Syndrome (EDS). 

Unable to live with her illness any longer, Otto said she had chosen to end her life by completely stopping eating and drinking. Voluntarily stopping eating & drinking (VSED) is a medical last resort, usually taken by people who are terminally ill and close to death. Following consultation with a doctor, patients are kept comfortable as they give up all food and water in their final weeks of life. 

On the 8th of November, Otto began posting about her end-of-life journey on TikTok. In a video made from the same hospital bed, she wore a gown with a medical tube visible over her right shoulder and explained that VSED would take “anywhere from 3 to 21 days.” Her fiance was “shopping around” to find a suitable hospice, she added. Followers responded positively with one saying, “you are amazing Queen. I wish I could do more. Sending… strength and positive vibes”. 

But for the next 5 months, Otto continued to post on TikTok, giving a series of reasons when asked what was prolonging the VSED process, including “wanting to spend more time with family and friends”. Then, in February 2022, she made what was meant to be her final TikTok post. The video shows her sitting on a bed or chair, wearing a hoodie while looking as though she was about to fall asleep, and nodding along to a song. 

But there is more to Otto’s story than meets the eye. Social media platforms, including TikTok and Instagram, have been accused of encouraging people to exaggerate or even feign illnesses by allowing some diseases to trend on their platforms, using the algorithms to effectively exploit vulnerabilities for clicks and engagement. 

At her peak, Otto had almost 2,000 Instagram followers and 151,000 TikTok followers from blogging about her life with EDS – a rare, inherited connective-tissue disorder with 13 different subtypes, each with their own set of symptoms. Most of these are not life-threatening, including the Hypermobile EDS Otto says she has, which leads to increased flexibility of limbs and stretchy, fragile skin. Few people had heard of the disease a few years ago, but awareness of it has grown significantly through influencers such as Gigi Robinson, who took to social media to share her experiences and made thousands of dollars through collaborations with popular brands in the process. On TikTok, #ehlersdanlossyndrome has had more than 5,000 posts with over 12.5 million views.

In January this year, something strange happened. After months of silence, Otto reappeared on TikTok looking healthy and very much alive. In a short video posted to the platform, she explained that she had “attempted” to stop eating and drinking but ended the process after 14 days because she “found it to be unbearable”. 

People who had been following her journey reacted with anger, with one commenting: “So she’s not dead?… such a liar,” while another wrote: “She’s disgusting”. Within days, Otto made both her TikTok and Instagram accounts private, but videos shared by her followers show that Otto is still posting content of herself in hospital. Now talking about EDS-related issues with her stomach and the pain medication she is receiving, Otto has asked followers for advice on gastric bypass surgery but has stopped talking about being at the end of her life. She has not responded to our requests for comment via Instagram, Facebook and TikTok and has no public email address.

The change in Otto’s story left many of her supporters feeling duped, but for those who followed her elsewhere online there was a sense of vindication. 

Hundreds of the 134,000 people on Reddit’s r/Illnessfakers forum – a place where some members of the chronic illness community track and accuse those they believe to be faking – had already decided Otto was faking her condition and eagerly awaited her return. 

The number of people documenting their chronic illnesses online has grown exponentially in the last five years. And with it, the number of people faking chronic conditions (for a complex mix of reasons, including clout) has also grown. The majority of accounts – with genuine illnesses and without – are run by women and, while there are some male chronic illness TikTok accounts, their follower numbers are far lower. Male content creators address the issue, saying that talking about mental health and illness is harder because of the pressures of masculinity. 

There is still very little research into faking being sick on social media, but a 2021 study from Bournemouth University says that the principal motivations of what is termed “Munchausens by Internet” are fraud and attention. TikTok and Instagram algorithms contribute to the issue via “trending” illnesses, incentivising both those who fake conditions and those who call them out with increased views and attention. 

Algorithms decide what posts to show users based on their video likes, the accounts that they follow, the comments they post, and so on. Content creators can game the system to show their content to a wider audience by working out the most popular hashtags and using them on their posts, ensuring they make it into as many feeds as possible. The current most popular illness-related hashtags are ChronicIllnessWarrior, Spoonie and InvisibleIllness, amassing over 100 million views between them.

Stiff Person Syndrome is one of the most recent trending conditions and, when Celine Dion spoke out last year about having the extremely rare neurological disorder, which can lead to muscle spasms caused by noise, touch and emotional distress, this led to a massive increase in engagement for creators also claiming to have the condition. 

Becoming the voice of authority on a given illness and gaining the respective clout relies on being the first to latch onto whichever illness is trending. Invisible illnesses (such as EDS) are favoured by scammers because they do not come with obvious physical symptoms. 

A case in point is Carrie Jade Williams, the TikTok scammer who we exposed late last year. She claimed that she was being sued for having Huntington’s Disease, a degenerative disease which results in early death, and generated thousands of views and followers both supporting and calling her out. Another prominent example is ex-Grey’s Anatomy writer Elisabeth Finch, who convinced employers, friends and her own wife that she had cancer before being forced to come clean late last year. 

By the time Otto came back online, moderators and anonymous members of the r/illnessfakers forum had made a five-part “series” of written posts documenting her medical journey. The posts dated back to 2019 and featured lengthy descriptions of her online activity. Linked Imgur albums showed related pictures and videos taken from her Instagram and TikTok accounts with accompanying snarky commentary. Users referred to Otto discussing her conditions in an “inappropriately blase, carefree” manner, and the comments also noted that her list of medical conditions “includes [both] symptoms and…contradictory conditions. Gotta catch ’em all!”

Believing it is their moral duty to expose those they suspect of faking illnesses, many posters attempt to quantify their snark with pop-psych buzzwords. One user (a stranger to Otto in real life) commented on a screenshot of a post Otto had made about her partner, saying it showed “the self-centeredness of her relationship”, adding “[Otto] contextualises [the relationship] entirely on what he has done for her…and the boundary overlap is extremely toxic and inappropriate.”  

Even their posts about Otto’s long-term eating disorder, accompanied by apparent concern for her mental health, are bracketed by sarcastic commentary on her other “diagnoses”. Many TikTokers have reported the forum to Reddit and, likewise, many forum members have reported Otto’s account to TikTok. When VICE News reached out to Reddit for comment, it directed us to the site’s content policy, which opens by stating that “no community should be used as a weapon”. The first rule encourages users to “remember the human,” adding that “Reddit is a place for creating community…not for attacking marginalised or vulnerable groups of people”. When asked why r/illnessfakers was permitted to exist given that it appears to violate both of the above rules, Reddit did not respond. A TikTok representative also linked us to the app’s community guidelines, which said it removes content that contains medical misinformation but, at time of publication, Otto’s account remained active.

It’s also worth noting that a Forbes survey last year showed that 33 percent of Gen Zers surveyed trust TikTok influencers over doctors and that “relatability to a shared personal experience and the influencer’s personal triumph over a health condition make them [more] credible [to other users]”.

This willingness to trust personal experience over medical professionals also ensures that individuals seeking both the clout and public sympathy that comes from having chronic conditions, can latch onto trending illnesses for a stream of positive attention and even financial rewards. Otto started her own line of merchandise and used the $3,400 followers had raised to help her with medical costs to buy a second-hand Jeep. 

A large number of those using the r/illnessfakers forum (and almost all of their subjects) appear to be under 40, and many have a history of eating disorders or childhood trauma. For many, the truth is complicated.

Paige Donovan-Smith, a 23-year-old New Zealander, has spent a large part of her life in hospitals. Documenting her journey on both TikTok and Instagram, her daily posts are dedicated to her medical conditions, which have included EDS, autism and gastroparesis (a condition which affects the transit of food through the stomach) among others. Most of her videos show her in a hospital setting and she has both feeding tubes and intravenous medication lines going into her body. 

The result of this has been a stream of both supportive comments and criticism which, on one occasion, prompted TikTok to suspend her account after someone claimed that Donovan-Smith was a minor, a likely malicious attempt to silence her. Although she never openly asks for money, Donovan-Smith’s current TikTok bio contains an Amazon wishlist from which her 128,000 followers can buy her gifts including $189 Beats headphones. We do not know the full extent of the gifts she has received, but comments on her videos show followers saying, “I bought the Crocs for you, kiddo” and, “I have a full set of Diamond Art, where do I send it?” VICE News reached out to her for comment but got no reply. 

As with other illness influencers, Donovan-Smith uses relevant hashtags including epilepsy, EDS and MRSA, a strain of antibiotic-resistant bacteria. Sepsis is also popular, and Donovan-Smith has posted numerous TikTok videos highlighting the various infection sites on her body. Most start around the entrances to her feeding tube or IV lines and, while vague about the cause of these infections, she generally hints that they happen spontaneously. Last year, one of these infections spread to her left hand and, despite all medical interventions, could not be controlled. She had two fingers amputated as a result.  

For most who encounter Donovan-Smith online it is apparent that, regardless of which specific condition she has, she is unwell. She is never pictured without her feeding tube and is nearly always in hospital, telling viewers about her latest illnesses. The diagnoses vary but there is always more than one and Donovan-Smith often has dressings covering some sort of wound or infection site. 

On r/illnessfakers these are rarely taken seriously and users clearly enjoy pointing out the odd placement of Smith’s multiple IV lines and (at one point) the casts on both her arms. There is a gamification to their tracking – a kind of “spot the difference” where forum users take joy in pointing out what they see as key differences between Donovan-Smith’s named conditions and what they think they should look like. Two months ago, Donovan-Smith’s TikTok account disappeared completely, prompting even more speculation.

Patients whose goal is to remain unwell (such as those with Munchausen’s syndrome, who are reluctant to give up the attention they receive from being sick) will sometimes interfere with IVs, either by removing them completely or contaminating them, to induce an infection. Medical professionals respond by moving the IVs out of reach or covering them with a cast. Donovan-Smith has never explained the shifting placement of her IV lines or the casts she’s worn, leading users of the r/illnessfakers forum to conclude that she is faking her conditions – something she fervently denies. 

Given Donovan-Smith’s continually changing diagnoses, we cannot know for sure whether any of her conditions or infections are self-induced or not. 

Dr Ben Janaway, an NHS psychiatrist based in east London who specialises in adult mental health, told VICE News that people with Munchausen’s may fake illnesses to “obtain public sympathy or empathy”. By saying that they have a variety of illnesses, he said, they are “trying to get a caring response” and that it “isn’t simply about hoodwinking other people”. Janaway added that “online communities often give people a chance to interact more openly than they would with a doctor or someone they know” and that the empathy of strangers on social media can be beneficial for their mental health. 

A paper published in Comprehensive Psychiatry, a peer-reviewed medical journal, on the rise of TikTokers exhibiting mental illness symptoms goes into this in more detail, acknowledging that  “there has been a well-documented uprise in popular content creators with… self-diagnosed mental health symptomatology on [TikTok]”. The paper also notes that rare diagnoses have “a distinct appearance of being romanticised, glamourised, and sexualised” as an explanation for why so many young people seek to fake them and goes on to say that, as young women are more likely to be diagnosed with depression and anxiety, they are more likely to seek ways to mask this. Taking on the identity of a sick person allows them to feel unwell without the need to quantify their behaviour. 

Multiple people with both physical and mental illnesses have highlighted struggles they face online and the damage done by those on forums like Reddit. To understand the apparent lack of empathy in users of the Reddit forum, we need to look at the TikTok algorithm. 

As with most social platforms, the TikTok algorithm is influenced by hashtags and interactions, boosting accounts accordingly. Unfortunately the algorithm cannot tell whether posters really have the chronic illness they are talking about. Likewise it cannot distinguish between those using a chronic illness hashtag to spread awareness and those using it to promote snarky call-out videos. 

For those with chronic illnesses who have spent a lifetime trying to get doctors and society to take them seriously, seeing people rewarded with views, follows and successful crowdfunding campaigns for faking their conditions can be infuriating. Janaway, the NHS psychiatrist, told VICE News that this can then lead to the formation of groups such as r/illnessfakers as a way for people to “take back control of their own narrative”. 

Dr Casey Fiesler, an Associate Professor in the Department of Information Science at Boulder University, told VICE News that controversy is good for social media companies. “On platforms like TikTok, controversy often drives engagement, which creates incentives for creating controversy,” she said.  

“When misinformation spreads on a platform – whether it’s someone intentionally deceiving people or just someone getting it wrong – it’s very hard to correct it. Just like more people are likely to see an inflammatory news headline than the fine print correction at the bottom of the page.”

However, this type of public shaming and mob justice has had some truly tragic outcomes.

The story of 40-year-old Canadian dancer Kelly Ronahan, is a recent and devastating example of a woman with mental health issues who reached out online, only to be relentlessly attacked leading to life-changing injuries. 

Ronahan first came to prominence in 2016 when Global News Canada published a story about her rare unidentified blood disorder and bi-weekly transfusions to highlight a lack of donated blood in British Columbia. Her social media posts at the time showed her practising ballet while hooked to a blood bag and displayed old self-harm scars, leading troll-site LolCow Farms to conclude that she was deliberately inducing anaemia via self-harm. Evidence recently provided to VICE News by Kelly’s sister, Gina Petrovich, suggests that they may be correct. 

LolCow Farm operate similarly to notorious troll-site Kiwi Farms, a long-running forum whose doxxing and harassment of individuals online has been repeatedly linked to the suicides of four trans women and one learning disabled cis-woman. Neither site takes responsibility for their the content it publishes and, when we emailed Josh Moon, Kiwi Farms’ owner, for comment he replied: “How about you google Kiwi Farms to see what the press has already written about us before trying to impersonate a ’journalist’ to scare me, you dipshit.”  

Seeking to defend herself from LolCow Farm’s accusations, Ronahan made a number of anonymous accounts. Posing as a variety of people, including her own sister and her therapist, Ronahan admonished users of LolCow Farm while sharing images of her actual mental health assessments to the site.  

The discovery of this by mods led to further mockery and a second forum was established on Kiwi Farms to continue the assault. 

Talking to VICE News via Zoom from her home in Canada, Petrovich said that Ronahan is a sweet person with a number of mental health challenges who “loved being a victim”. Lacking affection in their childhood, Petrovich said that Ronahan had tried to recreate this by claiming to have a number of illnesses online and basking in peoples’ sympathy. When Petrovich had asked her to definitively list her diagnoses (wanting to know if she, as a twin, would be at risk of developing them), Ronahan dodged the question, leaving Petrovich in a limbo where she still cannot conclusively say whether her sister has any chronic illnesses or not.

The mental health assessments Ronahan posted echoed this, showing a history of C-PTSD and associated concerns. None of which mattered to people on Kiwi Farms or r/illnessfakers who attacked her, claiming she did not deserve the many blood transfusions she had received because her injuries were self-inflicted. When VICE News asked Petrovich about this, she was reluctant to say that Ronahan’s injuries were self-created despite having evidence which strongly indicated that they were, but told us that “regardless of…how it happened, there is a problem mentally…and she still needed the blood”. 

In 2018, having failed to stop the trolls and now facing daily hate on both social media and the Kiwi Farms forum, Ronahan began to post pictures of her legs on Instagram.  

Claiming to have Behcet’s disease – a rare disorder that causes blood vessel inflammation – but not showing typical symptoms, she displayed the fresh and healing wounds which covered both shins. Immediately claiming that her wounds were self-induced, people on Reddit and Kiwi Farms continued to track and comment on her online activity. Ronahan responded by writing on Kiwi Farms that “For good or bad reasons, you assholes worship me…Infamous is still famous”. 

Over time, Ronahan’s injuries became increasingly severe, until both of her lower legs resembled those of a burns victim and she admitted that she had a bacterial infection which required skin grafts. The entire grisly process was filmed, photographed and posted online by Ronahan, leading many followers to stop interacting with her. On Kiwi Farms and r/illnessfakers however, the negative-attention carousel kept turning, often providing her only feedback. In March 2022 the full effects of this became apparent when her grafts developed another infection, leading to both her legs being amputated above the knee. After a few posts about life without her legs, Ronahan abandoned her social media accounts completely, leading TikTokers to make numerous videos “reacting” to her journey. Tagged as “true crime” and lacking a personal connection to Ronahan, the majority of their “research” appeared to come from Kiwi Farms and Reddit. 

Petrovich echoed this, and said she still received messages and comments from strangers demanding to know “what happened to Kelly” or asking “is Kelly dead yet?” She said: “They are ruining an already very complicated life…they don’t know us yet they feel entitled to say ‘oh, this happened because of xyz in their childhood’…who are [they]? How is this legal?” 

After highlighting the accounts involved to TikTok, one video showcasing Ronahan’s wounds was removed, but others remain and it is unclear why given TikTok’s zero tolerance policy on bullying and ‘content designed to degrade people’. It would appear that disguising such content as “true crime” or “mental health awareness” (which many of the remaining videos do) circumnavigates the rules. 

Petrovich said “if Kelly had not had that Instagram, she would still have her legs”. If the trolling, Reddit and TikTok activity were to continue, Petrovich said, “there’s a good chance that next year my sister will no longer be with us”. 

“They’re basement nobodies,” she says of the TikTokers using their tragedy to drive engagement. “These people are disgusting.”