Alex Turnquist began noticing her tics at the end of her spring semester at Loyola University Chicago. The COVID-19 pandemic forced the then 20-year-old out of her dorm and back home with her parents. It was there, watching videos of herself recorded on Snapchat, that she saw her eyelid twitching uncontrollably in playbacks. Soon after, her head started shaking in a distinctive, jerky way.
She told her psychiatrist, who wondered if antidepressants had brought on the tics. After a year of follow-up, which included briefly going off the medication to no avail, Turnquist was diagnosed with an abnormal tic disorder. She’s still not sure what caused it to appear when it did, but this March she posted to TikTok under the handle @alexandrea.joy after seeing recent reports from the UK that seemed to describe what she was experiencing.
“So I developed a tic disorder during the pandemic, and I thought that it was Lexapro that did me in because there’s some research on that,” she says in the video. “But I just learned that the isolation of the pandemic has been causing a massive outbreak of [tics] in girls.”
Doctors who specialize in Tourette’s Syndrome and other tic disorders have turned their attention to people like Turnquist after seeing referrals for these rapid-onset conditions balloon from 1-5 percent of total cases pre-pandemic to 20-35 percent of them now, according to data from a viewpoint study published on August 13.
The researchers describe "a parallel pandemic of young people aged 12 to 25 years (almost exclusively girls and women) presenting with the rapid onset of complex motor and vocal tic-like behaviors," and state "there have been striking commonalities in the phenomenology of these tic-like behaviors observed across our centers in Canada, the United States, the United Kingdom, Germany, and Australia."
Curiously, the researchers state that for the patients they studied, in addition to experiencing pandemic-related stressors, "all endorsed exposure to influencers on social media (mainly TikTok) with tics or [Tourette's Syndrome]." Indeed, there are thousands of videos, some with millions of views, in a corner of TikTok affectionately referred to as "Tic Tok." According to the researchers, "In some cases, the patients specifically identified an association between these media exposures and the onset of symptoms…. This exposure to tics or tic-like behaviors is a plausible trigger for the behaviors observed in at least some of these patients, based on a disease modeling mechanism."
A separate article published in July, meanwhile, studied popular TikTok influencers with tics, and found that TikTok tics were "distinct" from typical Tourette's symptoms. "We believe this to be an example of mass sociogenic illness, which involves behaviors, emotions, or conditions spreading spontaneously through a group," the authors wrote.
Now beginning a PhD in molecular immunology and cancer biology at Dartmouth, Turnquist said that her STEM background positioned her better than most to parse through the most recent research on sudden-onset tic disorders, and she agreed with the researchers’ conclusions: “I feel like the stressors of the pandemic were a lot, and it probably pushed some threshold over the edge.”
“An Epidemic Within a Pandemic”
In the fall of 2020, Tamara Pringsheim and Davide Martino, two neurologists at the University of Calgary in Canada, started hearing about cases of rapid-onset tics among young people from other clinicians. A colleague working in the ER told Pringsheim, who is also the medical director of the Tourette’s Syndrome and Pediatric Movement Disorders Clinic at the Alberta Children's Hospital, about three teenage girls with oddly similar symptoms admitted over the span of a week. Then, in January, the number of referrals they were getting increased substantially.
“It’s an epidemic within the pandemic,” Martino said.
The patients’ symptoms differ meaningfully from those of classical Tourette’s Syndrome, the most well-known tic disorder, he said. First of all, Tourette’s tics tend to start between the ages of 5 and 7—Martino said they have not yet seen a patient younger than 11. While Tourette’s patients skew male, these referrals were nearly all girls and young women who tended to also have anxiety or a mood disorder. And, they suffered more extreme symptoms than Tourette’s patients.
Based on these differences and others, the neurologists defined the rapid-onset symptoms as functional tic-like behaviors, rather than tics themselves. The pair are co-authors on two studies about the condition in adults and children that were published in July and August, respectively.
“They cannot stop”
Pringsheim said that telling patients about this distinction could be difficult: “Sometimes it's a tough conversation, saying, ‘I don't think you have Tourette’s Syndrome, I think you have these functional tic-like behaviors that have likely been triggered by the distress of the pandemic’—there’s some resistance or disappointment,” she said.
Though these patients do not have Tourette’s, Martino added that their symptoms are no less legitimate and merit specific treatment.
“They cannot stop, and we have absolutely witnessed that,” he said. “Some of the patients and families we talk to are desperate; we need compassion and commitment to try and help them.”
What took the pair one step closer to understanding the condition were the tic-like behaviors themselves: for instance, several people would uncontrollably say the word “beans.” Though it’s a single word, this behavior is considered to be a complex vocalization, unlike the simple facial tics that Tourette’s patients often have, like blinking frequently or wrinkling one’s nose, Pringsheim said.
Like most internet ephemera, it’s impossible to say for sure where the “beans” tic came from, but there are dozens of videos on TikTok and discussions on Reddit that mention the behavior and its connection to @thistrippyhippie, a TikTok creator who announced her Tourette’s diagnosis in 2020 and who has 13.5 million followers on the platform.
Clearly, @thistrippyhippie, a British 21-year-old named Evie Meg, is not at fault for teens on TikTok uncontrollably saying "beans." Neither are the people experiencing these sudden-onset symptoms, which are real and debilitating, according to the researchers studying them. But a growing body of research, including three studies published in August, indicate that these patients don’t have a traditional tic disorder.
Instead, Pringsheim, Martino and other researchers working on this phenomenon believe that the stress of the past year—from lockdowns to school closures to social isolation—coupled with pre-existing mental health conditions in some cases led this population to subconsciously require an outlet for their distress. In other words, researchers currently believe the condition does not have a genetic component to its origin like Tourette's, but rather environmental or psychological ones.
According to the researchers’ theory, seeing popular creators with tic disorders on social media sites was the match that ignited the kindling. TikTok did not respond to a request for comment.
Tyla Saxton, who uses the handle @tylatics on TikTok, can point to Evie Meg as the reason she’s a creator on Tic Tok, the subculture of TikTok dedicated to people sharing their experiences with tics and tic-like behavior. Saxton, a 23-year-old from the UK, doesn’t have a diagnosis yet but is on a waiting list to see a neurologist to diagnose tics that began a year and a half ago, just after Britain exited its first lockdown for COVID-19.
“I developed quite severe social anxiety when it started,” she said, adding that formerly quotidian activities like going outside would cause her to panic and have disruptive tic attacks. “I then got TikTok and saw some of the people with tics on there—the main one was @thistrippyhippie. That gave me the confidence to start going out more, and then I decided I wanted to raise awareness for it as well.
Saxton said that she often picks up tics from watching other Tic Tok creators’ videos, something that Turnquist says happens to her, too. “Catching” others’ tics is common for both those with tic disorders and rapid-onset tic-like behaviors; to give viewers control over what they may absorb, Saxton said that she includes trigger warnings on videos of her demonstrating some of her more violent tics. In one video that begins with a warning screen lasting several seconds, she hits herself repeatedly in the face. Other creators, including Meg, appear with bruises and other injuries caused by violent tics and tic-like behavior.
Tics and tic-like behaviors can spread on the internet outside of TikTok, too. An article published August 23 in the journal Brain detailed German clinicians’ anecdotal experience of noticing an increase in patients with tic-like behaviors over the past two years that bore a resemblance to those that a popular YouTuber documented on the platform.
“There's a lot of really weird, backwards stigma on TikTok about tic disorders”
The researchers theorized that the condition affecting their patients was a form of mass sociogenic illness—a poorly understood and contentious phenomenon once called mass hysteria. They, and others, have compared their current observations to a famous 2013 outbreak of tics in Le Roy, New York, which is also thought to have been a mass sociogenic illness. The difference this time, the German researchers argued, is that videos on social media induced the condition, rather than face-to-face contact.
The researchers did not respond to a request for comment.
Not all clinicians agree with this assessment. An editorial published in April in the journal Archives of Disease in Childhood suggested that future studies can test hypotheses related to mass sociogenic illness and a possible biological mechanism. And Martino said that the role of social media has been overemphasized, and it is just one factor among many in the development of these tic-like behaviors.
“It's important not to focus all the attention exclusively on social media because we don't want to stigmatize the social media personalities sharing their experiences on TikTok or YouTube,” he said. “In most cases, these are individuals who have been doing this within the context of advocacy, and that is in itself not a bad thing, obviously.”
Because of the connection to social media and the connotations of a sociogenic illness, patients experiencing tics may feel they are not being taken seriously.
Myah Adele, a social media influencer who uses the handle @maybemyahadele on TikTok, said that she was taking a college course in psychology and watching videos of girls with Tourette’s for it. She had developed what she considered “muscle spasms” after a traumatic event in 2018, and after watching the videos, she felt herself mimicking the girls’ tics. When she told her doctor what was happening, she said her doctor explained that her behavior could be caused by a physical reaction to the grief and trauma she was experiencing.
Though her doctor diagnosed her with a tic disorder, she said that she still worries about others thinking she’s faking her symptoms, and even has to convince herself that she’s not making them up.
“Two days ago, I was asking myself if I was faking it or not, and obviously I’m not faking it—I was alone,” she said, adding that her tics can be stressful and painful, too.
Turnquist said that she has received some pushback in the comments of her TikToks from users doubting her condition. She said she aimed to spread awareness about sudden-onset tic disorders with her videos and tries not to let the negative comments and threats get to her, adding that the criticism emphasized the need for her efforts.
“I feel like there's a lot of really weird, backwards stigma on TikTok about tic disorders," she said. "Like, you aren’t allowed to have one unless it’s this one."
Pringsheim said that she and Martino are working on a follow-up study to identify the treatments that work best to manage or cure sudden-onset tic-like behaviors, which they will complete in a few months. Turnquist, however, said that after trying a number of therapies for over a year, she’s accepted that her tics are a part of who she is. She does her best to manage her triggers, which include stress, alcohol and exhaustion. But she does not have plans to stop watching and creating videos on TikTok, a decision that Martino said he understands well.
“It is a bit unrealistic to ask people to de-expose from social media as a whole," he said.