Six Billion Tics

Social Media ‘Influencers’ & the Spread of Mental Disorders

In October 2021, doctors from around the world gathered via Zoom to discuss a new type of tic disorder becoming increasingly prevalent among adolescents. While the disorder resembled Tourette syndrome (an illness characterized by involuntary movements and vocal sounds), these new patients displayed tics that did not fit a Tourette diagnosis. Most Tourette patients are male; they begin displaying symptoms in early childhood (around ages 5–7); and while their tics gradually worsen, very few progress to the point of extreme tics (such as uncontrollably shouting obscenities).

In contrast, the new cases tended to be in adolescent and teenage girls with no history of tics and with severe tics appearing suddenly; some girls shouted over a hundred different words or phrases in addition to displaying numerous physical tics. Perhaps most curiously, these doctors realized, many of their patients displayed similar, if not identical, tics (such as shouting the word “beans”).¹

What might these teens, spread across the globe, have in common? The likeliest answer is social media.² As researchers look into this phenomenon, they find that many of their patients’ tics mirror those of prominent social media influencers. A relatively new phenomenon involves online communities being built around those who have a particular disease or illness. In the case of tic disorders, certain influencers, such as Evie Meg from the U.K. or Jan Zimmermann from Germany, have garnered huge followings (Zimmermann has over two million subscribers on YouTube; Evie Meg has nearly fifteen million followers on TikTok).³ On TikTok alone, videos with #tourettes have been viewed more than six billion times.⁴

Mass Social Media-Induced Illness

In an article published in Oxford Academic’s Brain in February 2022, researchers hypothesized that we are witnessing a novel phenomenon—the first recorded cases of a “mass social media-induced illness” (MSMI).⁵ Unlike mass sociogenic illness (or what was previously called mass hysteria), which is localized to a specific group or area, MSMIs can spread wherever there is internet access and a social media account. Researchers note that the youth who suffer from MSMIs are not making things up or “faking it.” What these young people are experiencing is very real to them, even though it is not necessarily related to Tourette the way they may suppose.

Influencers with tic disorders are not the only ones with large followings on social media. Other, more extreme disorders have their representatives as well. For example, “The A System” is a TikToker whose posts focus on his dissociative identity disorder (DID; previously known as multiple personality disorder), and his account has reached over 1.2 million followers.⁶ He claims to be a “system of 32ish” distinct personalities, and his videos feature him and his many “alters” (alternate personalities), some of which he occasionally switches between mid-video. Much less has been written about the growing popularity of DID videos, although some outlets are beginning to take notice.⁷ Given that this genre is closing in on one billion views, these are clearly having an influence on teens and young adults.⁸

While there are many other similar online communities, one more worth special mention is the transgender community. In her book Irreversible Damage, Abigail Shrier includes an entire chapter on social media influencers and the pull they exert on young women. The trans influencers she studied and interviewed shared similar messages with their listeners, including: “If you think you might be trans, you are”; “If you’re not supported in your trans identity, you’ll probably kill yourself”; and “Deceiving parents and doctors is justified if it helps transition.”⁹

Shrier views these trans influencers as a part of the explanation for why many adolescent girls are suddenly developing transgender identities. This fits with earlier research by Lisa Littman, who found that 87 percent of parents reported their child had either increased internet/social media use or belonged to a social group that included transgender-identifying friends at the time of their rapid onset of gender dysphoria.¹⁰

Ill-Founded Communities

The potential for online communities of influence to contribute to the spread of mental illness is alarming and raises a number of ethical issues. The oft-given defense of these groups is that they provide “community” and a “safe place” for those who suffer from their illness. It can be comforting to know that there are others like you and that you are not alone. These goods, however, need to be balanced against the potential harms that are resulting. At the very least, greater awareness on the part of parents, teachers, and doctors about the kinds of social media content youth are consuming is warranted, and perhaps greater protections are necessary.

Another oft-cited benefit of having communities and influencers devoted to different mental illnesses is that they can eliminate the stigma around mental illness by talking about it openly and honestly. While reducing the stigma of mental illness is a worthy goal, it is again worth asking whether these influencers are actually helping people better understand these illnesses.

In the case of the Tourette community, doctors have noted that many influencers do not seem to have the syndrome at all. While some seem to have a mild form of Tourette, others display evidence of a different condition called functional movement disorder (FMD).¹¹ In the DID community, its influencers commonly present in ways that go completely against established diagnostic criteria, such as having far more alternate personalities than is typical, switching between them seemingly at will, and having an awareness of each one. Influencers in the trans community at times encourage lying to medical professionals in order to receive the desired diagnosis.

These influencer behaviors raise another concern. If the influencers in these communities do not actually have the disorder they purport to have, or if they have an exceedingly unusual presentation of it, their viewers will get a skewed, if not an entirely incorrect, account of how the illness manifests.

This is not to say that no influencers suffer from a mental illness or that they are actively trying to deceive people. However, it does demonstrate that, as should be expected in a medium dominated by peer-to-peer sharing, misunderstanding and misinformation abound. While it could be easy to write this off as harmless or less important than the benefits they offer, the fact that more and more adolescents are being pulled into these communities and even developing similar conditions themselves should give us pause.

The Popularity Factor

This relates to a similar issue with social media popularity—it creates a number of perverse incentives. For most people suffering from a mental illness, their desire is to mitigate symptoms or recover. However, social media influencers who have built their following because of their mental illness will be incentivized to avoid improvements that could cost them followers. In fact, they may even be incentivized to get worse—more extreme symptoms tend to make for more interesting content.

Similar incentives apply to those who consume their content. While social media is available to all, it is hard to feel a part of a community, especially a community built around illness, if you do not have that illness yourself. Additionally, influencers hold a glamorous position; they often show themselves as living idealized lives, and even when they share their struggles, those watching are bound to question how difficult their situation really is if they are still consistently able to produce videos and build a following.

It seems only natural, then, that more and more adolescents are diagnosing themselves with disabilities they see online. Developing a mental illness allows them to be part of a community and to identify with those they look up to and whose content they consume, and it gives them the chance (however remote it might be) to become popular and develop a following of their own. It would not need to be on a large scale or even on social media; for some, being able to fit into a clique at school or to gain the approval and admiration of friends might satisfy this desire for a following.

It is easy to write off warnings about social media and the influencers who populate it as hyperbolic. After all, it might be argued, most people who view influencers with Tourette or DID are not going to go out and develop an illness themselves. While this may be true, we should also remember that we have a responsibility to the vulnerable. Even if only a small subset will be adversely affected (although this number seems to be growing), we should be aware of the dangers, be ready to warn those who might be at risk, and be prepared to help those who are searching for understanding and community.

Notes
1. Helen Lewis, “The Twitching Generation,” The Atlantic (Feb. 22, 2022): theatlantic.com/ideas/archive/2022/02/social-media-illness-teen-girls/622916.
2. Sirin Kale, “‘The Unknown Is Scary’: Why Young Women on Social Media Are Developing Tourette’s-Like Tics,” The Guardian (Nov. 16, 2021): theguardian.com/media/2021/nov/16/the-unknown-is-scary-why-young-women-on-social-media-are-developing-tourettes-like-tics; Julie Jargon, “Teen Girls Are Developing Tics. Doctors Say TikTok Could Be a Factor,” The Wall Street Journal (Oct. 19, 2021): wsj.com/articles/teen-girls-are-developing-tics-doctors-say-tiktok-could-be-a-factor-11634389201.
3. “Gewitter im Kopf—Leben mit Tourette,” YouTube (accessed June 9, 2022): youtube.com/channel/UCh2Nc3OwjSwuXrUdFNXqFbQ; “thistrippyhippie,” TikTok (accessed June 9, 2022): tiktok.com/@thistrippyhippie.
4. #tourettes, TikTok (accessed June 6, 2022): tiktok.com/tag/tourettes.
5. Kirsten R. Müller-Vahl et al ., “Stop That! It’s Not Tourette’s but a New Type of Mass Sociogenic Illness,” Brain (Aug. 23, 2021): https://doi.org/10.1093/brain/awab316.
6. “The A System,” TikTok (accessed June 9, 2022): tiktok.com/@theasystem.
7. For example, see Lo Styx, “Dissociative Identity Disorder on TikTok: Why More Teens Are Self-Diagnosing with DID Because of Social Media,” Teen Vogue (Jan. 27, 2022): teenvogue.com/story/dissociative-identity-disorder-on-tiktok; Jessica Lucas, “Inside TikTok’s Booming Dissociative Identity Disorder Community,” Input (July 6, 2021): inputmag.com/culture/dissociative-identity-disorder-did-tiktok-influencers-multiple-personalities.
8. “#dissociativeidentitydisorder,” TikTok (accessed June 9, 2022): tiktok.com/tag/dissociativeidentitydisorder.
9. Abigail Shrier, Irreversible Damage: The Transgender Craze Seducing Our Daughters (Regnery, 2020), 41–57.
10. Lisa Littman, “Parent Reports of Adolescents and Young Adults Perceived to Show Signs of a Rapid Onset of Gender Dysphoria,” Plos One (2019): https://doi.org/10.1371/journal.pone.0214157.
11. For more information on FMD, see “Functional Neurological Disorder,” National Organization for Rare Disorders (NORD): https://rarediseases.org/rare-diseases/fnd.