SHARLA SULLIVAN HAS DISTANT MEMORIES of being a small child, maybe 5, and jumping uncontrollably in her ice skates. She knew it was dangerous, but couldn’t stop. Other times, her arm would jerk from her side without warning.
Her mother, Jane, was worried, but doctors told her it would all go away on its own — and soon enough, it did. The behaviors became a childhood oddity, a thing of the past attributable to Sharla’s energetic nature.
But in January 2021, the sudden movements came back. Sharla, a bubbly 14-year-old who once excelled in her classes, now regularly misses several days of school a week, confined to her home in London, convulsing and whistling, and feeling, she says, her sense of self slip away.
At first, Jane hoped that her daughter’s symptoms would fade away on their own, just as they did in her childhood. Instead, they have gotten worse. Sharla sometimes hits herself and her mother uncontrollably. Her head snaps back without warning, occasionally hitting against a wall.
At a loss, Jane took Sharla to see a neurologist, a specialist in movement disorders whose fees she could ill afford as a single mother. The neurologist began with a question that confused mother and daughter alike: Had Sharla been watching TikTok?
TOURETTE SYNDROME, a neuropsychiatric condition that is the most well-known cause of motor and vocal tics, is rare, estimated to affect about 0.6 percent of children in the United States. It is most often diagnosed in kids who have experienced observable tics since at least their early elementary school years and have a variety of other neurodevelopmental risk factors. The tics tend to start subtly, with minor movements like blinking or swallowing, and sometimes expand to sounds like whistling. Tourette tics can escalate but are rarely explosive at the outset.
But in recent years, movement disorder specialists began to see a startling trend. A paper published in August 2021 in the journal Movement Disorders showed that referrals in which “tic-like” behavior was the primary problem jumped dramatically during the pandemic: Clinics with a referral rate of 1 or 2 percent pre-pandemic jumped to 20 or 30 percent in the first half of 2021. Doctors say many of these cases are entirely different from Tourette syndrome, and even different from typical cases of Functional Movement Disorder, a fairly broad diagnosis that applies to people who experience a range of involuntary movements that are not caused by Tourette syndrome or nervous system damage.
Compared with the typical person diagnosed with Tourette syndrome, these new patients are older, and display more extreme symptoms, which range from jerking their heads to hitting themselves, from making clicking noises to shouting obscenities. The symptoms come on suddenly and can be severely disruptive, resulting in injuries, missed days of school, and reduced self-confidence. These patients are also far more likely to be girls and women, while people diagnosed with Tourette syndrome are overwhelmingly boys and men.
Clinicians have been successful in alleviating many patients’ symptoms through therapy. But the cause has left experts stumped. Some clinicians immediately recognized a peculiar pattern in these new cases: Many patients move in the same ways — and even shout the same phrases — as popular TikTok and YouTube creators who describe themselves as having Tourette syndrome or other movement disorders. Some experts remain hesitant to tie these new cases definitively to social media, but most I interviewed agree that some combination of social and psychological pressure, not a neurological problem or other physical factor, is to blame for the new cases.
The medical murkiness around this new phenomenon has left young patients and their families to navigate a media firestorm and volatile public opinion. Coverage calling these cases the “TikTok tics” has zeroed in on the unproven connection to social media and sometimes overlooks the concerns of both new patients and people with diagnosed movement disorders. Two pictures have emerged: One of attention-seeking teens who aren’t actually sick, and another of helpless, impressionable children who caught some kind of disease from their phones.
Both narratives belie the complexity that doctors and patients alike see in these new cases. They have also trapped multiple groups — people diagnosed with Tourette syndrome, people with functional tic disorders, and people experiencing new and unexplained tics — in a cycle of skepticism and blame. People who have lived with diagnosed tic disorders for years and young people newly desperate for answers are met with the same deflating question: Is your suffering real?
Dr. Kirsten Müller-Vahl, a neurologist and psychiatrist, has spent the past three years trying to puzzle out a link between social media, rising anxiety among young people, and the new type of patients she’s seeing at Hannover Medical School in Germany.
In 2019, teens and twentysomethings with little to no history of neurological illness began showing up to Müller-Vahl’s clinic, many believing they suffered from Tourette syndrome.
But Müller-Vahl, an expert in the syndrome throughout her 30-year career, saw something entirely different in the eerie similarity of her new patients’ movements and vocalizations. Within a matter of weeks, she and her colleagues had pieced together an explanation: YouTube.
Each of Müller-Vahl’s early patients had watched videos of a German YouTube creator with a large following and a distinct set of tic-like behaviors — which matched almost perfectly with the symptoms of her patients. They were not suffering from Tourette syndrome, Müller-Vahl concluded, but some kind of functional movement disorder triggered by what researchers call a mass sociogenic illness.
Cases of mass sociogenic illness have been documented since at least the Middle Ages — instances when groups of people have suddenly come down with fainting, headaches, stomach problems, and, yes, uncontrollable movements. Researchers concluded that when a community is subjected to extreme stress certain people can develop physical ailments that have no biological cause, and then pass those ailments on to others close to them. The COVID-19 pandemic has been linked to skyrocketing rates of anxiety among teens around the world. Young women have been especially affected, with the United States seeing a marked increase in mental health-related emergency room visits among adolescent girls. This offers one explanation for why that group has been most susceptible to this new wave of illness.
What is different about this potential sociogenic outbreak, Müller-Vahl says, is that social media has made communities global, allowing both stressors and symptoms to spread more widely.
“It seems that contact can be so close via social media,” Müller-Vahl says, that the same emotions and feelings occur as in face-to-face contact. “People feel so close to an influencer via social media that spread of symptoms is possible.”
TikTok videos tagged #tourettes — many of which depict lighthearted day-in-the-life scenes or self-deprecating humor — have 5.7 billion views. Several doctors who spoke with the Globe Magazine say that the behaviors of some of the most popular influencers do not seem like Tourette tics, pointing out that rare symptoms such as shouting obscenities seem vastly overrepresented on social media. Nonetheless, clinicians say the young patients who show up to clinics replicating the influencers’ behaviors do so involuntarily, and to their extreme distress.
Doctors are clear that “sociogenic” does not mean “fake.” In fact, the term was adopted to move away from the negative and sometimes dismissive connotations of an earlier term, “psychogenic,” which contained traces of an even older idea, “mass hysteria.” Rather than point to something imaginary in the nature of their patients’ conditions, doctors say this explanation points to a reality of all our bodies: Illness can be social. Intangible social and emotional environments can influence our brains and health.
‘Many women shared stories of encountering misinformation and bias that led them, and even doctors, to question whether their tics should be taken seriously.’
While most doctors who spoke to the Globe Magazine view social media as an important factor in this illness, there are also critiques of the idea of mass sociogenic illness in general — a label most often applied to unexplained conditions affecting women. That disproportionality raises alarms for people who study the history of gender and medicine.
Tourette syndrome and known movement disorders already have a fraught history when it comes to gender. While it’s true that boys are diagnosed with the syndrome far more often, it is also true that women with tics are likely underdiagnosed. Girls are also less likely to be diagnosed with autism and attention deficit hyperactivity disorder, which doctors sometimes look for in patients’ medical history to help determine whether their tics have a neurological cause.
Devon Oship, a Tourettic woman, has made it her mission to raise awareness about these gender biases.
“A lot of updated research is finding that Tourette syndrome is really pretty common in women too,” says Oship, who lives in Buffalo and is a master’s candidate in neurology. She became more involved in online spaces supporting people with Tourette syndrome and tic disorders as a senior in college, around 2017. She noticed that whereas men involved in those groups tended to have a formal diagnosis, often conferred early in life, many women turned to social media after experiencing symptoms but failing to get a diagnosis. Or else they recognized Tourettic traits in themselves only after a male family member was diagnosed. Many women shared stories of encountering misinformation and bias that led them, and even doctors, to question whether their tics should be taken seriously.
“We brought it to the attention of organizations and a couple of different research bodies, and there was just a lack of interest that we thought was really rooted in a lot of sexism,” Oship says. She suspects the same sexism makes it easy for researchers today to quickly conclude a social rather than physical cause for girls’ tics.
Another complication in the social media theory of tics is that people who have Tourette syndrome or other neurologically-based tics experience “tic swapping,” temporarily picking up and passing on their symptoms when they gather with other people with tics. In those cases, the mirroring might be brought on by social contact, but the hard-wiring that causes their tics is still neurological. This means that some young people experiencing noticeable tics for the first time could have underlying, undiagnosed neurological conditions brought to the surface through exposure.
Then there is the fact of the COVID-19 pandemic and the many unknowns surrounding the virus’s long-term effects. Several researchers, including Rob J. Forsyth, a child neurologist and senior lecturer at Newcastle University in the United Kingdom, have raised the possibility that the so-called TikTok tics could in fact be a post-viral symptom or result of brain inflammation brought forth by the coronavirus.
Joseph F. McGuire, a psychologist at Johns Hopkins Medicine in Baltimore who has seen patients suffering from a sudden onset of tic-like symptoms, believes determining the root cause of these cases is an important task — a task he still considers incomplete. But most important for now, McGuire says, is taking patients’ distress seriously and offering whatever treatment is possible.
“We don’t know” what the underlying biological or environmental factors might be, “whatever’s kind of contributing to this,” he says. “But it’s real for that patient and real for that family.”
McGuire and other clinicians also emphasize hope: Most patients drastically improve, or even fully recover, with a combination of therapy and lifestyle changes such as establishing a routine. For some patients, the relief of a proper diagnosis is enough to begin alleviating symptoms on its own. Experts encourage cognitive behavioral therapy or other evidence-based treatments to address underlying mental health and developmental conditions, which nearly all of the affected young people exhibit. And while online communities can offer support and solidarity, doctors also discourage parents and patients alike from treating their symptoms as permanent or neurological — some even advise against using the word “tic.”
“A lot of these kids get better,” McGuire says. “It just takes time.”
EVEN AS MEDICAL RESEARCH and treatment offer hope to people affected by this new wave of illness, a popular narrative supported by a handful of influential magazine articles has made living with tics harder for some. People spoke with me about a storyline taking hold that casts movement disorders as somehow less real than other illnesses, part of a social media trend. The doubt, fear, and blame that follows in the wake of that narrative can cast suspicion on all people with tics and tic-like behaviors, even if they have diagnosed Tourette syndrome.
Amanda Holbrook remembers the exact date she was diagnosed with Tourette syndrome. She had involuntarily made minor repetitive movements since she was 13, something she and her doctors attributed to obsessive compulsive disorder, for which she was already receiving care. But in the summer of 2020, when she was 18, tics that had once been easy to brush off suddenly became much more extreme. For months, she struggled to understand what was happening to her. So on December 14th, when a neurologist delivered the Tourette diagnosis, Holbrook felt overjoyed.
“I remember the date because it was a very happy day in my life,” says Holbrook, now 20 and studying biochemistry and neuroscience at Worcester Polytechnic Institute. Following her diagnosis, she got involved in the Tourette Association of America, an advocacy group with chapters across the country. She started a TikTok account to talk about Tourette syndrome, and she raised awareness on her personal Instagram. She remembers feeling supported, empowered, and understood.
“I finally had answers to so many things,” Holbrook says.
But in the past few months, over a year into her life with diagnosed Tourette syndrome, Holbrook has started to encounter people who question the validity of her Tourette syndrome — including members of her family. She was diagnosed as a teenager, after a sudden onset of acute symptoms. She uses social media to talk about her tics. Amanda Holbrook, to some people, sounded like a story they were starting to hear: One about girls who caught tics online.
Holbrook does not fit the profile of those cases, aside from gender and age. Tics are only the most recognizable aspect of life with Tourette syndrome, a condition that often goes hand in hand with forms of neurodivergence including autism, ADHD, and OCD, the latter of which Holbrook is diagnosed with. Her diagnosis is backed by neurologists, and her advocacy is supported by TAA. But still, the stigma of the so-called TikTok tics has reached her.
Holbrook does not entirely dismiss the idea that social media could play a role in these new cases. But for her, the focus on the potential negative impacts of social media is especially painful because platforms like Instagram and TikTok have been so important to her journey toward finding community and acceptance.
Many people involved in Tourette advocacy who spoke with the Globe Magazine are less concerned with the validity of the social media theory than its potential to turn public opinion against all people experiencing tics. They describe a landscape where some able-bodied people distrust people with tics, regardless of diagnosis. Others fear Tourette syndrome contagion. And some people experiencing tics feel compelled to separate themselves from alleged pretenders.
In the minds of many people, Holbrook says, any teenage girl with tics “is faking it.”
SHARLA SULLIVAN’S ANSWER to the neurologist’s question about whether she had watched tic-related TikToks was yes and no.
“I guess I was kind of confused,” Sharla recalls. “Because I knew that I didn’t use social media as much as [the doctor] was saying I did.”
Sharla had come across a few TikTokers who said they had started experiencing tics during the pandemic. She followed a couple, but she spent little time watching their videos, or on TikTok at all. In her mind, it’s all just a coincidence. And anyway, she and her mother remember tics from Sharla’s childhood — the ones doctors told her mother, Jane, to ignore. The neurologist seemed less interested in that.
Jane had paid out of pocket to see this new doctor, an expert in the field who had even written about the wave of young girls exhibiting tic-like behavior. But the neurologist was “fixated” on TikTok as the sole explanation, Jane says. The neurologist ended by repeating what so many doctors had said before: Ignore it. It’ll go away. And she added a new warning: Make sure your daughter stays off of her phone.
That was last April. Sharla’s tics have not gone away. Instead, Jane has continued to press for referrals and treatment, hitting what she describes as a wall of bureaucracy and dismissal each time. Jane has taken Sharla to see family doctors, pediatricians, neurologists, and mental health workers. She has spent 700 pounds, around $900, to see specialists in a country where most health services are free.
“I’m not rich. I’m a single mum,” Jane says, “but I would sell my soul. You know, I’d sell my kidney if I needed to.”
Jane has turned to online support groups for Tourette syndrome and tic disorders, finding sympathy but not answers. She has also done her own research and come up with a few theories of what is going on with her daughter. She wonders if a post-viral effect of COVID-19 could be the explanation, though neither she nor Sharla had ever tested positive before the onset of Sharla’s tics.
In the meantime, Sharla is left living in an unpredictable body, waiting for answers. And her mother watches. As Jane puts it, it’s been “a whole year of just deterioration,” and still counting.