Through My Eyes

Before I begin, I need to make something clear. Far too often, works like this are taken as the collective message of an entire group rather than as what they are, an individual’s thoughts and feelings. My intention for this article is to share my view of this issue, no one else’s, and it would be a disservice to me, the TS community, and yourselves to interpret it as anything more.

In the Fall of 2021, news of the so-called “Tourette outbreak” began to surface. Psychologists and news outlets alike reported a sudden rise in tic-like behavior in teen girls. I found it quite interesting, but eventually, it faded into the background. Recently, however, it was brought back to my attention when my dad sent me an article published in The Atlantic titled “The Twitching Generation.” It is a long article, nearly four thousand words, and offers an in-depth look into this issue and its implications.

It begins by describing the sudden spike in patients exhibiting Tourette-like symptoms during the pandemic, everywhere from Germany to Maryland to Texas. The connection doctors believed: TikTok. The exact medical cause of these “TikTok tics” has been hard to pinpoint, and the only current explanation is a mass psychogenic illness, previously known as mass hysteria. This diagnosis may seem harsh, but the Atlantic states, “The teenagers who watch the #tourettes videos also find community, acceptance, sympathy, and validation. Less wholesomely, they find proof that the more eye-catching, disruptive, or rude the creator’s tics are, the more viral they go.”

Here is where our problems begin. I am not a doctor, and I am unqualified to judge the legitimacy of this diagnosis, so we are going to set that question aside for this article. The issue this diagnosis presents for me is the implication that people in the Tourette community are just “faking it.” For the average person who knows little to nothing about tic disorders, it would not be unreasonable to conclude that if one group’s tics were mere hysteria, another might be too.

The next problem lies in the fact that many of the Tourette influencers are not Tourette influencers at all. During their investigations, doctors analyzed the videos of several popular Tourette influencers. They found that while many likely have mild to moderate TS, their more disruptive, flashy, and ultimately more famous tics are very likely the result of something called functional tics (tics caused by functional neurological disorder). In fact, one of the most popular Tourette influencers, Evie Meg Field (@thistrippyhippie), acknowledged that she was diagnosed with FND several years ago and was only diagnosed with TS well after she had become a TikTok influencer. Functional tics are more elaborate than those from TS, which is why they have drawn so much attention. In an article addressing the rise in tic-like behaviors, the Tourette Association stated, “The tic-like behaviors in a growing number of people do not follow the usual tic patterns seen in Tourette Syndrome and other Tic Disorders. Some authors have suggested “TS symptom portrayals on highly-viewed TikTok videos are predominantly not representative or typical of TS.”

In general, I don’t think that most influencers have malicious intent. An incomplete or inaccurate diagnosis is out of their control, and I do believe that many of them genuinely want to bring awareness to a very stigmatized group. However, they are creating a false image of what TS looks like for people learning about tic disorders, primarily from these videos. It forms an impression that typical TS symptoms are the outlier.

With that, we arrive at the final problem: influencers using their diagnosis to their advantage at the expense of the TS community. I do not mind people who have learned how to harness their tics into a source of financial support without harming others; I applaud them. However, I take great issue with people like German YouTuber Jan Zimmermann, creator of the account “Gewitter im Kopf” (“Thunderstorm in the Head”). The Atlantic article reports, “he threatened legal action against an activist who called him a Nazi after he released a baking video in which he said, “In the oven, give my regards to Anne Frank.” His lawyers’ central claim was that he could not be held responsible for his comment because it was a tic. Here is where I see a problem. Yes, tics are involuntary, and people should not be punished for things beyond their control. However, the decisions to post the video and not to edit out the comment were conscious ones. Zimmermann using his tics to post hurtful things without any repercussions sheds a bad light on the whole community. It reinforces the idea that we use our disorder as an excuse to say and do anything we want, knowing most people will be unable to protest.

The real epidemic here is one of misinformation. TS has been a mystery to most people because it has always been considered taboo, and that is what makes this so dangerous. The only reason this false narrative has circulated for so long is people have been too scared to look for the real one.

Works Cited

Conelea, Christine A., et al. “A Call for Caution: ‘stop That’ Sentiments Threaten Tic Research, Healthcare and Advocacy.” Brain, vol. 145, no. 4, 25 Feb. 2022, pp. e18-e20. Oxford Academic, https://doi.org/10.1093/brain/awac028. Accessed 17 Jan. 2023. Abstract.

“Functional Tics.” FND Guide, neurosymptoms.org, www.neurosymptoms.org/en/symptoms/fnd-symptoms/functional-tics/. Accessed 18 Jan. 2023.

Jargon, Julie. “Teen Girls Are Developing Tics. Doctors Say TikTok Could Be a Factor.” The Wall Street Journal, 19 Oct. 2021, Family & Tech sec., www.wsj.com/articles/teen-girls-are-developing-tics-doctors-say-tiktok-could-be-a-factor-1163438920. Accessed 18 Jan. 2023.

Lewis, Helen. “The Twitching Generation.” The Atlantic, 27 Feb. 2022, Ideas sec., www.theatlantic.com/ideas/archive/2022/02/social-media-illness-teen-girls/622916/. Accessed 18 Jan. 2023.

Müller-vahl, Kirsten R., et al. “Stop That! It’s Not Tourette’s but a New Type of Mass Sociogenic Illness.” Brain, vol. 145, no. 2, 23 Aug. 2021, pp. 476–80. National Library of Medicine, https://doi.org/10.1093/brain/awab316. Accessed 18 Jan. 2023. Abstract.

Psychology Today. www.psychologytoday.com/us/blog/media-spotlight/202109/is-social-media-causing-mass-psychogenic-epidemic. Accessed 16 Sept. 2021.

Stony Brook University Neurosciences Institute. “Acute Onset Functional Tics.” Stony Brook University Neurosciences Institute, neuro.stonybrookmedicine.edu/functionaltics#:~:text=Tics%20can%20be%20seen%20in,to%20as%20'functional%20tics’. Accessed 17 Jan. 2023.

Tourette Association. “Rising Incidence of Functional Tic-Like Behaviors.” Tourette Association of America, 20 Nov. 2021, tourette.org/rising-incidence-of-functional-tic-like-behaviors/. Accessed 18 Jan. 2023.