When Suzanna Benassi was 13 she started having seizures. They weren’t from epilepsy though, because she was aware and conscious the whole time. Her tics weren’t from Tourette syndrome either. For months, she lacked a proper diagnosis, until doctors in her hometown of Frankfort, Kentucky, finally told her she had a mysterious mental condition in which nervous system symptoms couldn’t be explained by any physical evaluation.
Now 23, Benassi has been diagnosed with functional neurological disorder (FND). When she was diagnosed at 13, the condition was still called conversion disorder, a term that has been controversial for its historical association with female “hysteria.” The diagnosis is spreading fast worldwide, especially among young women. And like many others suffering from the condition, Benassi copes by posting videos about her disability on TikTok, where she has 29,000 followers and 1.2 million likes.
“I want to spread awareness,” Benassi says. “A lot of times, especially on TikTok, I use humor. I make jokes about it. It’s also therapeutic for me, in a way, to get it out there.” Videos showing tics, posted using the hashtags #Tics and #Tourettes, have attracted more than 9 billion views since the start of the COVID-19 pandemic. Videos posted with the hashtag #FND have been viewed more than 450 million times.
Whether these videos do more harm than good is an open question, however – and very much depends on who you ask.
Since the start of the pandemic in March 2020, clinicians around the world have reported an uptick in teenage girls worldwide who have developed Tourette-like involuntary repetitive tics, which some experts are calling “TikTok tics.” What almost all of those new patients have in common, doctors say, is that they have watched videos produced by online influencers demonstrating their verbal and physical tics.
Doctors get these questions all the time: is the recent proliferation of these videos helpful or harmful? Does it spread the tics like a contagion; does it help affected teens understand they’re not alone and can be helped, or does it do both?
“I think there’s been some people too ready to blame it all on social media when I think it’s more complicated than that,” says Dr. Jon Stone, a neurologist affiliated with the University of Edinburgh who has been researching and treating functional neurological disorder for more than 20 years. “FND is a really neglected and stigmatized disorder that we’re trying to make less neglected and less stigmatized.”
But Dr. Kirsten Müller-Vahl’s patients take a different view. “I honestly cannot see the benefit,” says Müller-Vahl, who runs a Tourette syndrome outpatient clinic at the Hannover Medical School in Germany and chairs the European Society for the Study of Tourette Syndrome. “Most of my patients in the outpatient clinic tell me that they do not like these kinds of videos and that they do not watch them.” She adds that those patients say the videos can perpetuate negative stereotypes that all tic disorders include shouting vulgar or offensive words.
Stone, who is also the secretary of the Functional Neurological Disorder Society, says that he had seen patients with functional tics long before the advent of social media. He adds that his patients say they started watching tic videos after developing tics as a way to look for comfort and possible advice. He acknowledges, however, that watching other people’s tics does tend to worsen their own. “Watching people tic is a bit like watching someone yawn,” says Stone.
There are some crucial differences between people diagnosed with Tourette’s and those with “TikTok tics.” Tourette syndrome is a neurological disorder characterized by involuntary, repetitive movements and vocalizations. While its exact causes are unknown, Tourette’s is likely an inherited disorder caused by gene variations. But the upswing of tic-like behaviors diagnosed as functional neurological disorder is instead related to the increase in mental health distress during the pandemic, and is often triggered by a preexisting condition, usually anxiety, experts say.
During the pandemic, visits to the website of FNDHope International have almost doubled, as has membership in peer Facebook groups for patients, according to Bridget Mildon, founder and chief executive of the non-profit patient advocacy group.
These kinds of disorders are anything but new, however. From 2008 to 2017, more than $1.2 billion per year was spent on hospital care for FND patients in the U.S., according to one estimate. Mildon says the disorder can spread in multiple ways, not just through social media, and can also afflict people who have not experienced specific trauma or anxiety disorders.
“I think it’s really important to understand the severity of this illness. It’s common and can be as debilitating as multiple sclerosis or Parkinson’s,” says Mildon. “And yet, there’s very little awareness about the illness in general; there’s very little support given to this patient group.”
Ten years ago, in the small town of LeRoy, New York, 19 teens spontaneously developed involuntary tics during a single school year. The event is considered an example of mass sociogenic illness, or an outbreak of symptoms that spread socially with no infectious agent responsible for contagion beyond heightened anxiety. While the LeRoy teenagers knew each other because they attended the same high school, the explosive growth of social media has created innumerable opportunities for symptoms to spread far beyond the boundaries of a single town.
In 2019, for example, a 22-year-old man with mild Tourette’s launched the German YouTube channel Gewitter im Kopf (“Thunderstorm in the Brain” in English). Almost immediately, patients with similar symptoms started appearing in Müller-Vahl’s outpatient clinic in Hannover. Social media has become so dominant in spreading these symptoms that she has suggested that “mass sociogenic illness” should be replaced by a more specific term: “mass social media-induced illness.”
As with Tourette’s patients, those with functional tic disorders are often diagnosed with an underlying psychiatric illness – but usually a different one. While Tourette’s patients are frequently diagnosed with attention-deficit/hyperactivity disorder or obsessive-compulsive disorder, people with abrupt-onset tics are more often diagnosed with depression or anxiety, according to Dr. Caroline Olvera, a movement disorders specialist at the Rush University Medical Center in Chicago.
Stone says that some of his patients at the University of Edinburgh have major psychological difficulties, and these tics present as a manifestation of their distress. But he adds that he meets plenty of functional tic patients who are most distressed about having involuntary movements when they are just trying to be normal teenage girls.
People with TikTok tics are much more likely to have involuntary motor tics, in which they injure themselves, and obscene vocal tics than Tourette’s patients, according to Olvera’s research. Of the cohort of TikTok users she researched who were experiencing severe tics, about 40% had to go to the hospital because they could not suppress their movements. In contrast, only 5.1% of patients with Tourette syndrome need hospitalization for their tics, according to her research. Another key difference: people experiencing these functional tics almost never feel them coming, while Tourette’s patients sometimes do, according to Eric Storch, a psychologist at Baylor College of Medicine who works with both groups.
The demographics of the two groups differ, too. While functional tics overwhelmingly occur in females, often teens, the majority of Tourette’s patients are male and present with tics much earlier. Those tendencies don’t always apply, however: Müller-Vahl notes that about half of her FND patients who watched the German YouTube channel were male.
Though there are many differences between Tourette’s and FND, treatments are somewhat similar.
It’s important to teach both groups about their tics so they can identify the movements and suppress them by applying skills taught through behavioral therapy, says Storch. A key step in treating both groups is for doctors to provide patients with understandable, up-to-date information about the symptoms, causes and potential management of their disorders. The goal is to reduce blame, stigma and negative feelings related to the patient’s symptoms by normalizing the difficulties the patient and their family may be experiencing.
Education can work so well, in fact, that some patients’ functional movements improve almost immediately upon diagnosis, according to Müller-Vahl. “We believe that the earlier the correct diagnosis is made, and this means excluding Tourette syndrome, and the earlier the correct treatment is initiated, the better the prognosis is,” she says.
For people like Suzanna Benassi, supportive doctors have made it easier for her to manage her condition. She adopted a service dog named Dobby who is trained to alert her to symptoms before they occur, which has helped her be more independent.
All this suggests that online therapy, which has become ubiquitous during the pandemic, could at least theoretically be helpful in diagnosing and treating large numbers of people suffering from persistent tic disorders. Initial research has been encouraging but has focused on patients with Tourette syndrome, not FND.
For now, though, many patients with sudden-onset tics are getting support from the same sources that may have exacerbated their symptoms: social media. For example, when 41-year-old Martin Baker, from Essex, U.K., was diagnosed with FND, he joined a closed group on Facebook for other patients. The founder of the group has worked closely with Stone, one of the authors of an online guide to FND that is given to many newly diagnosed patients. Baker says the group helped him find the right doctors to reach out to and taught him new ways to cope with his diagnosis and symptoms.
While social media has helped some FND patients find a supportive online community, it still presents some risks. When Rachel Mackie was diagnosed with FND in 2017, her main symptoms were paralysis and fatigue. She says she is grateful to have connected with other FND patients in her hometown after she started posting her own videos about the condition. But at the start of the pandemic, the 25-year-old from Scotland started watching TikToks made by an influencer who sometimes posts videos of her seizures. She liked watching the videos but gave them up after noticing that she would have many more motor tics than usual after watching them.
“I think she triggered my seizures,” says Mackie. “I would never say that to her, but I never had the seizure symptoms until I had seen on TikTok that it was a symptom.” Now, she says, “I don’t tend to watch any videos, because I’ve been doing so well that I wouldn’t even want to risk it.”