Back when I was an attending psychiatrist on the Trauma and Dissociative Unit at McLean Hospital, we worked with individuals with complex PTSD, some of whom had dissociative experiences. A handful of these extremely traumatized individuals fit the diagnostic criteria for Dissociative Identity Disorder (DID), which used to be called “multiple personality disorder.” None of them remotely resembled how DID has been portrayed as essentially a one-person costume party in shows like the United States of Tara and books like Sybil (which is based on someone who later revealed they were making up most of their story) . It’s also worth emphasizing none of the people I have encountered in my professional life as a psychiatrist wanted to have DID.
When I heard from our IT Director, RJ Smith, that DID was trending on TikTok I scratched my head and began a deep dive into subreddits like r/FakeDisorderCringe to try and get to the bottom of this phenomenon. A recent article also helped me understand just how deep this rabbit hole goes. I quickly learned that not only was DID frequently trending on TikTok and Instagram, but other mental disorders that can be portrayed visually like Tourette’s, ADHD and Autism were taking up TikTok front page real estate the same way videos tagged with the much more innocuous #TimeWarpScan, #blindinglights or #MedievalTikTok hashtags got millions- sometimes billions- of views. On our Creator First show on Clubhouse, The Frontier Psychiatrists, we decided to host a conversation about why so many mental health influencers were essentially faking mental illnesses like DID.
Our panel included a number of mental health influencers who, contrary to the individuals spreading mental health misinformation, have found ways to share accurate information about mental illness and reduce stigma in the process:
-Jeremy Fox, a trauma specialist who practices EMDR therapy and has a very educational TikTok account
-Carly Krzanstek, a young woman on a mission to provide education and raise awareness about Tourette Syndrome through her YouTube Channel, Ticcing Together.
-Jessica Mayer, whose YouTube Channel devoted to Dissociative Identity Disorder, Multiplicity and Me, has over 200k subscribers and is a great source of nuanced information about dissociation, often complete with citations to academic papers.
-Autumn Farr, the CEO and Founder of Toi Magazine, a mental health publication and the organizer of the upcoming EntitleDID to Life conference.
-Gina Pellicci, LMSW, a Chronic Pain Warrior and the head of our Sex Positive Team at our practice, Brooklyn Minds
-Robert Tolppi, who has 1.1 Million followers on TikTok for videos that comment on pop culture and whose astute YouTube video on “TikTok’s Garbage Psychiatric Advice” really caught my eye.
Three Categories of Online Behavior
In many instances, we simply do not know the motivations behind the individuals posting these videos but they tend to fall into three broad categories:
-Factitious Disorder, also known unofficially as Munchausen-by-Internet when it involves online behavior: The motivation here is that the sick role itself is serving the psychological needs of the individual. “Just doing it for attention” could fall into this category but the key thing to keep in mind is that the motivations are often unconscious and people are not fully aware of what is motivating them to engage in feigning illness or exaggerating an actual illness (“gilding the lily”). Many of these individuals may have other underlying psychiatric disorders, especially personality disorders.
-Malingering: This is not an illness but rather a behavior where a person is intentionally feigning or exaggerating illness for a non-psychological reason such as wanting to make money or get out of another responsibility. A child who puts the thermometer under a lamp to miss school because they would rather play video games would be malingering. On TikTok or YouTube, someone who fakes Tourette’s disorder to capitalize on monetized views/subscribers and score brand partnership deals would be malingering. People faking cancer on the internet to scam others out of money would be malingering but if the person also is enjoying the attention of people believing they are sick could also be showing signs of factitious disorder so these distinctions are not always clear cut.
-Trolling: This is a scenario where people intentionally feign illness in order to cause drama online and rile people up, not because they enjoy the sick role or because they have another secondary motive but because they find the act of trolling thrilling and satisfying in its own right. There are definitely some videos on TikTok where it is unclear if the person is trolling, being satirical or is being sincere.
To Self-Diagnosis or Not to Self-Diagnosis
Some of the arguments for why videos about these various mental disorders should exist come down to the assertion that “self-diagnosis” of mental disorders is a result of our inadequate and often inaccessible mental health system making it impossible for many individuals to get appropriate assessments by professional clinicians. Indeed, for licensed medical professionals such as myself, we frequently scoff at “Dr.Google” and redirect people to get thorough evaluations. That’s all well and good except for the reality that many people cannot afford these evaluations and waitlists are months, sometimes years long. Therefore, online social media platforms from TikTok to YouTube to Clubhouse, have an increasingly large role to play in educating people about mental illness. If we as licensed professionals don’t join in these conversations, we run the risk of influencers with zero mental health or medical training having the loudest voice and glamorizing disorders in ways that invalidate the experiences of those who actually have them.
There are so many accounts online of young people saying they have DID dressing up in various costumes, changing their voices and presenting themselves as having many, many alters, each with their own pronouns and catchy soundtracks. During our show, we heard a clip of one “water sprite” alter and another identifying as a mermaid. I found a video online where the alters were all ghosts. When I came across the MultiplicityandMe content at first I thought it was going to be more of the same but instead discovered that beyond some of the more click-bait oriented titles were nuanced videos that resonated with the experiences I had working with people with complex dissociative disorders at McLean Hospital. The creator of these videos, Jessica Mayer, shared that she started her channel because when first diagnosed with DID, all she saw out there was discouraging information about her ever having hope of a fulfilling life. She is now married, training to be a therapist herself and has a child and her channel provides hope for many across the world. “You’ve got doctors, teachers, lawyers, nurses who have dissociative disorders and it doesn’t necessarily stop their lives...They learn to work with what they have,” she explained.
What can we do?
We intentionally did not include anyone on our panel from the subreddits devoted to exposing “munchies”- a term they use to describe individuals with Munchausen-by-Internet who feign mental illness and medical illness for often complex psychological reasons. Part of that decision was because a lot of the posts on these forums contain misinformation as well. For example, someone on a forum wanted to expose a fake DID poster by citing that DID cannot happen before age 30. This is not accurate. Furthermore, these subreddits drive further traffic to the accounts they are exposing which is counterproductive given the motivation beyond many of these accounts is to get attention, any type of attention, and also to get revenue from viewers and clicks. Jessica has instead suggested that if we come across accounts that appear to be spreading mental health misinformation, we should first approach with constructive criticism and compassion. Some individuals will not be open to this but others may be. At the very least, leaving comments that are constructive may help others who come across the account. She also emphasizes that the inner experiences of individuals are opaque to outsiders, especially when it comes to mental illness, and trying to “out the fakers” is fraught with problems and should be left to trained mental health professionals.
For many individuals with highly stigmatized and often poorly understood mental disorders such as dissociative identity disorder, tic disorders and schizophrenia, accounts that present theatrical and glamorized versions of the disorder are deeply troubling and hard to understand. These accounts seem tone deaf to the actual suffering of these individuals and cast doubt upon individuals who have the actual disorder. Also, in online communities organized around supporting individuals with a specific disorder or with chronic illness, when someone is subsequently revealed as faking it erodes trust within these communities well beyond that specific situation.
Our Favorite Mental Health TikTok Accounts
With the explosion of “mental health influencers” online, it can be challenging to distinguish high quality accounts from ones that are popular but spreading misinformation. If you are looking for some accounts that consistently share good mental health information, in addition to the panelists’ accounts, here are some we recommend:
@thistrippyhippy with Tourette’s
@uncletics “I put the Tik in TikTok”
@dreadbehemoth doctor in psychology, LMFT
Who are your favorite mental health accounts to follow online? Let us know in the chat.
---
DSM-5-TikTok
As always, very thorough and poignant at the same time. As a psychiatrist who works with very complex patient populations I can greatly appreciate the thoughtful way in which this article approaches a very difficult situation. The key take away for me is to always remember that every behavior has a purpose whether it’s conscious or not and understanding the why is far more important then telling the person why not.
"Munchausen-by-Internet" is a new term for me! Thank you for continuing to educate me. Can I get CEs for reading these???