This article is part of Social Anxiety, a series exploring how social media impacts our mental health.
Until recently, it was rare for a young patient to come to psychologist Naomi Torres-Mackie, PhD, head of research at The Mental Health Coalition, with a formal self-diagnosis. It was even rarer for several of those patients to land on the same serious, trauma-related condition.
But lately, Torres-Mackie has seen several patients who cite social media as the reason they believe they have dissociative identity disorder, a condition induced by trauma so severe that the mind forges multiple identities to cope.
“All of a sudden, all of my adolescent patients think that they have this,” Torres-Mackie said. “And they don’t.”
The DID community on TikTok is growing not only in popularity, but also in number. And as many mental health professionals urge young people to reconsider which experiences require pathologizing and what’s just part of growing up, the reality is that social media is making that distinction exceedingly more difficult.
What is DID?
Dissociative identity disorder (DID), formerly known as multiple personality disorder, is an often misdiagnosed mental health condition characterized by a constellation of symptoms. The diagnosis identifies two or more distinct identities, commonly referred to as “alters,” that exist within a single individual, or “system.” Each holds the potential for its own personality, memories, behaviors, gender, sexuality and, in some cases, attributes like allergies.
Dissociative disorders in general often develop as a result of trauma, but DID in particular seems to develop after severe, ongoing trauma, such as physical or sexual abuse, that occurred during childhood. In an incredibly sophisticated effort to protect itself, a traumatized child’s brain can shift between separate identities to manage the distress. It’s estimated that DID is present in only about 0.01% to 1% of the population.
Thanks to portrayals in popular culture, including films like Split, which was heavily criticized by both clinicians and the DID community for depicting the condition as inherently violent and dangerous, the condition is widely misunderstood. The truly scary parts of DID are experienced by the individual — flashbacks, amnesia, non-epileptic seizures, and brain fog can happen. Over 70% of DID outpatients have attempted suicide, according to the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, or DSM-5, which is the standard guide used by mental health professionals.
TikTok’s DID Community
Someone with DID may “lose time,” or experience minutes- to days-long periods of amnesia. A difficult-to-watch TikTok video with 5.5 million views from creator @sometimesgimena portrays the experience as the creator, Gimena, who identifies as a system of 23, faces a bathroom mirror in a tearful state of distress.
Gimena’s channel dips into various concepts of DID and elaborates on her experience of being diagnosed four years ago at the age of 21. Now, she’s made it her life’s purpose to help others avoid the same struggle and confusion she went through. But she’s careful about what she broadcasts.
“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.”
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.
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.
When a patient is self-diagnosing such serious conditions as post-traumatic stress disorder or borderline personality disorder, Semel’s aim is to validate her clients and help them make sense of their experiences. But social media has added a new level of complexity to treating patients.
“It’s so hard to pull apart for a teen what is disordered and a pathology, versus what is just growing pains,” Semel said.
On social media particularly, the severity of DID is often misunderstood by those who don’t have it. And, derivative portrayals of the disorder and the spread of misinformation can harm the already-vulnerable individuals who navigate the condition every day.
Heather Hall, MD, a psychiatrist who’s been treating dissociative disorders for nearly 30 years and serves on the board of directors for the International Society for the Study of Trauma and Dissociation, has seen patients with DID that are tormented by what they see online. After reading claims that DID isn’t real, one of Dr. Hall’s patients began to question her own diagnosis.
“She wishes it wasn't true,” Dr. Hall says. “‘It's not true. I think maybe it's not true. Maybe, maybe you're not,’ she keeps telling herself. Because she would love nothing better than that.”
Seventeen-year-old Ivana, from Auckland, New Zealand, says she was diagnosed with DID at 16, and while she considers self-diagnosis a crucial step toward healing, she’s avoided TikTok’s DID community, as she feels dubious accounts “romanticize” and “sugar-coat” the reality of the condition.
“The misinformation is brutal on Tiktok…” Ivana said in an email. “These people who mock DID by pretending to have it in an extremely theatrical and overt way fuel the stigma to outsiders that people with DID are unstable and ‘crazy’.”
Still, as Semel pointed out, invalidating people’s experiences isn’t helpful either. Some people have gotten diagnoses of various conditions after recognizing their symptoms on TikTok, and it’s been a great relief.
That’s all to say 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.
The Unauthorized Diagnostic Manual
To Gabrielle, who just turned 20, scrolling mental health TikTok can be a gamble. Sometimes it’s cool and enlightening, but it easily gets overwhelming. As someone diagnosed with ADHD and bipolar disorder, she often comes across videos that make her question her own experiences.
“From seeing [a] TikTok, I’ll be like, wait, I do that,” Gabrielle said. “Was that just something I do as a personality aspect, or is that an ADHD thing?”
Videos on DID have made it to Gabrielle’s feed, as well. While she hasn’t experienced anything as severe as DID, the content inevitably plants a seed of doubt.
“It does make me a little bit more hyper-aware of [dissociating],” Gabrielle said. “I’m questioning myself like am I self-diagnosing? Is this that big of a problem?”
We all dissociate to some extent. Highway hypnosis, out-of-body experiences, disconnection from your surroundings — these are all instances of mild dissociation.
But somewhere along the line, Torres-Mackie said some people started pathologizing experiences that don’t signify a problem.
“Folks start attaching clinical meaning and feeling like, ‘I should be diagnosed with this. I need medication for this,’” Torres-Mackie said. “When actually a lot of these experiences are normative and don’t need to be pathologized or treated.”
But self-diagnosis is almost inevitable. Who among us hasn’t consulted Doctor Google when something feels off? Even mental health professionals aren’t immune.
“If you talk to any therapist, when we were in grad school and we started going through the DSM, most of us were like ‘Holy sh*t, that’s me,’” Minnesota-based therapist Shani Tran, LPCC. said.
The difference is that even if you aren’t seeking out mental health symptoms on social media, the algorithm may give them to you anyway.
Social media can be an incredible information resource, but many of the creators posting content about DID are not mental health professionals and can only relay their personal experience.
If you are concerned you have a mental health condition you observed on social media, examine the parts of the condition to which you do relate just as thoroughly as the ones you don’t. Then bring your conclusions to a trusted adult — which doesn’t necessarily mean a parent, Tran noted. School counselors can be a great resource, as well as mental health hotlines or programs in your area.
Receiving a diagnosis takes time and usually money, which can act as major barriers to care. For Ivana, the process was slow, but she wouldn’t change that. She advises against rushing into a diagnosis.
“It’s a very personal and fragile topic,” Ivana said. “Please, if it’s possible, try to keep it low-key for your own safety until you have your facts right.”
There’s no shame in trying to “figure out” the experience of growing up as you go along, as it’s often a confusing time rife with uncertainty. But young adults are still developing the skills to critique the world around them, Bakker pointed out, and pathologizing the identity exploration or hormonal mood swings that come with stepping into who you are could do more harm than good.
For anyone who relates to what they see in videos discussing DID, or any mental health condition for that matter, Tran has one important reminder.
“This is the conversation starter,” Tran said. “This is not the answer.”
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