“I don’t share my traumas,” Gimena said. “I don’t show my alters either. I don’t have any videos up there that are just for the purpose of showing the video.”
“If I post videos of the darker information, if I talk about how scary it is, then there will be a lot of comments like, ‘Oh, you’re attention-seeking.’”
Her videos pop up while exploring popular tags like #dissociativeidentitydisorder or #didsystem, and while she’s a consistent contributor to TikTok’s DID community, she doesn’t like to consume other content from people with DID, which can be triggering for her.
Some corners of this community have been criticized, sometimes by other community members, for glamorizing the condition and experience of trauma. Accusations of flippancy when discussing and showcasing certain behaviors, such as “switching,” which is when an individual changes alters and can be triggered by stress, has fueled the ongoing debate as to whether TikTok is a safe place for folks with certain mental health conditions. Since switching is typically involuntary, some wonder how people on social media are able to film their switches to post. In a comment on the video linked above, Gimena said she films her episodes when she’s able to for safety, as recommended by a therapist.
But dissociative identity disorder can be extremely isolating, points out Aubry Bakker, PhD, a neuropsychologist who has extensive experience working with teens diagnosed with DID, and co-founder of wellness boutique MOVMNT. Participating in TikTok’s DID community can remedy some of that isolation, she said. And having filmed moments can help fill gaps in memory and help individuals get in touch with their identities.
While there isn’t a wealth of information about DID in adolescents, many young people on TikTok list DID as an identifier in their bio. Some indicate a diagnosis, others don’t. The rise in people on social media claiming to have systems has sparked controversy both on and off the platform, as “fakeclaiming,” or accusing an individual of faking their symptoms, runs rampant in comment sections and subreddit threads.
Eiza Wolfe is no stranger to this. As a 19-year-old who says she was professionally diagnosed with DID last year, she uses TikTok to make sense of the condition and share her experience through posting, mostly, lighthearted skits. Still, regardless of what she posts, her content has been reposted to fakeclaiming threads.
“But if I post videos of the darker information, if I talk about how scary it is, then there will be a lot of comments like, ‘Oh, you’re attention-seeking, you’re posting this because you want attention,’” Wolfe said. “So there’s just really no way to win.”
This is the dangerous dance being played out on social media. While many applaud the de-stigmatization of mental health conditions by increasing visibility, users who do open up about their symptoms continue to be met with intense criticism.
At one point, Wolfe says she posted her medical diagnosis documents with the hope of quelling threats of doxxing from internet trolls. She’s since deleted the post, but says the near-constant accusations of fakery targeted at her and other members of TikTok’s DID community are triggering.
No one should be pressured to present proof of their trauma or medical diagnosis, but still there are individuals on social media spreading misinformation about DID, which only adds to the confusion of those already questioning their mental health.
“Almost all of my 14-22-years-olds that I work with right now have self-diagnosed something using TikTok,” said New York-based psychologist Rebecca Semel, PhD. “When a client says, ‘I saw this TikTok…,’ I’m waiting with bated breath. Where are we going with this?” Semel caveats that TikTok can be helpful, calling it “an accessible platform” that “gives a lot of tools and strategies that are … not so far from what I would suggest.” But, she says it can also be a place where people gather mental health advice and information from unreliable sources.
“Identifying a mental health condition as misdiagnosed as DID is hard to begin with, and social media is both making it better known, and creating room for more misunderstanding.”
Worldwide, experts are taking note. A study published over the summer identified “TikTok tics” as what researchers believe to be a mass sociogenic illness, or the spontaneous spread of behaviors or emotions through a cohesive group — in this case, young women. As tic and tourette syndrome content increased on TikTok, neurology clinics saw an increase in patients presenting tics, specifically during the COVID-19 pandemic. More interestingly, experts believe many of these tics are not performative. Doctors say the tics are very real, though they don’t necessarily indicate a patient has Tourette syndrome. Instead, it may be part of a functional neurological disorder, which is a type of condition that isn’t related to underlying disease. According to the Wall Street Journal, doctors recommend cognitive behavioral therapy and abstaining from TikTok as treatment. Donald Gilbert, a neurologist at Cincinnati Children’s Hospital Medical Center who specializes in pediatric movement disorders and Tourette syndrome, told the Wall Street Journal that anxiety and depression, which increased during the pandemic, can manifest through physical symptoms, and that doctors say the physical symptoms are often ones that patients have seen others perform before.
This content was originally published here.