Sixteen-year-old Jodie* had climbed into her grandparents’ car to go for lunch when she started uncontrollably squeaking. Freya*, 15, was sent home from school when her neck started jerking wildly. Teachers became concerned about Charlotte, 11, when her eyes started rolling back in her head. Two days later, she had a debilitating fit. Sadie, 14, just couldn’t stop poking her tongue out.
These girls are a handful of the many female adolescents in the UK who’ve developed tic disorders like Tourette’s during the pandemic – conditions that are categorised by repetitive and involuntary movements and sounds.
Great Ormond Street and Evelina children’s hospitals revealed in a recent report that they’re receiving three or four referrals for teenage girls a week. Before COVID, they had no more than six per year. This is described by psychiatrists in the report as “an explosion of tics”.
Fourteen-year-old Sadie from Somerset sat in her room terrified when she realised she couldn’t control her neck or tongue the night before returning to school in September. “I was really scared and confused. I thought ‘am I gonna die?’” she says. “Then I decided the best thing to do was hide it.”
Shutting herself away from her parents so they wouldn’t notice her twitching, Sadie exhausted herself trying to suppress her tics. “It’s like trying not to blink,” she tells VICE.
After a month of secrecy and encouragement from her friends and teachers, Sadie wrote her mum a letter. “I thought she was making a joke,” says her mum Kate, who immediately assumed by “tics” her daughter meant the kind “a dog would have”.
What Sadie was actually experiencing were involuntary movements and vocal outbursts, and her tics had intensified in the weeks she had tried to hide them. Now she was throwing objects across classrooms and unintentionally shouting random phrases. “I’m just as shocked at what comes out of my mouth as you are,” she told her teachers.
So far, anxiety has been deemed the root cause of the sharp flurry of unintentional twitching, shouting, hitting and collapsing among teenage girls. Dr Holan Liang, the Great Ormond Street psychiatrist behind the recent study says: “Many girls themselves and/or their parents can identify increased anxiety prior to onset and also as a trigger for symptom worsening.
“There are also suspected personal vulnerability factors, for instance unidentified neurodevelopmental disorders (autism spectrum disorder, specific learning difficulties and ADHD) and previous history of anxiety symptoms. Family history of neurodevelopmental disorders including tics, chronic illness, anxiety and depression are also important,” she explains.
In the midst of a relentless pandemic, underlying distress can go unnoticed in resilient teens. “Watching the news every day, deaths climbing, new infections – it’s pretty gruesome stuff when you’re 14,” says Suzanne Dobson from the support and research charity Tourette’s Action. “[Anxiety] might not have been significant to the child, but it was significant to the brain.”
However, paediatrician Dr Sharryn Gardner says any intense emotion can be just as significant: “Some of it is being stressed and isolated. But if you’ve not seen your friends for a year, it can just be that you’re dead excited, not nervous.” She admits: “This whole thing [rise in cases] with teenage girls is completely new. Nobody knows the whole answer yet.”
Sadie, Freya and Charlotte had all recently returned to school when their tics first started or intensified. Aside from exhaustion disrupting their education – Charlotte and Jodie can only manage a handful of lessons per week now – they are also triggered by their classmates who have the disorder, too.
“People in Freya’s school all developed it around the same time,” says her mum, Sophie. “It’s so weird because one girl’s tics will respond to another girl’s tics and they’ll both be having a conversation in class that’s completely beyond their control.”
This is distinct and separate from mass hysteria, a phenomenon which means twitching, fainting and hallucinations catch on in distressed groups. However, the recent report states that there has not been enough research done into whether social media is causing a “contagion” effect.
Those with tic disorders can be triggered by watching others through a screen. Tourette’s is so popular on TikTok – the hashtag has 3.2 billion views – that the platform has been affectionately nicknamed “tic tok” in the comments. “Some teenage girls report increased consumption of such videos prior to symptom onset,” the report reads. Dr Liang confirms in an email to VICE that suggestibility is evident in some of these girls and that they will try to investigate this further in future studies.
Dobson is also critical of the TikTok videos and social media. “It’s a double-edged sword. They go there for companionship, but it just perpetuates your own problem.”
As we live in an age of WebMD self-diagnosis, independent research is often irresistible. “It’s very difficult to live with something you don’t understand,” says Sadie, who’s been experiencing tics for five months and still hasn’t been given her first appointment with a paediatrician.
“There are too few clinicians,” says Dobson. “Waiting lists are up to two years. There just aren’t enough services. You have to visit your doctor four or five times before they refer you to the waiting list. It takes six, eight, nine months…”
Wait times are so bad that many parents spend thousands getting their girls the testing that they need privately. “We’re over £2,000 in,” says Charlotte’s dad, Andy. “That’s just to get a diagnosis. The blood tests cost £1,000 on their own.”
“I was told to ‘Google it’ by the GP,” remembers Jodie’s mum, Janine, who is supporting a petition for parliament to increase funding for support and research into Tourette’s across the UK after she struggled to get her own daughter seen by a specialist. “No parent should have to fight so hard to get help for their child,” she says.
While they wait, many girls have tried coping techniques like counting to 10 and squeezing their body when they feel a tic coming on. Sadie does “bubble breathing” where she circles the palm of her hand, inhales when she gets to the top, and exhales at the bottom. Freya noticed she never tics when she’s focused on the choreography at her dance class.
“Regular exercise, healthy diet, removing triggers [like hunger, tiredness or dehydration] can all help,” says neurodevelopmental therapist Kim Storey. But it’s near impossible to suggest universal tactics because every case is different, and tics and their triggers can change day to day. “One girl’s big trigger was eating cheese,” recalls Storey.
Coping methods can begin to feel useless to teens with more aggressive tics who are in serious need of professional assessment. “Freya can’t cook for herself,” says her mum, Sophie. “Her tic makes her touch all the hot pans or try to put her hands in boiling water. We have to hide all the knives in case she tries to stab herself. She just wants to be a teenager… snogging boys. All those things.”
With limited control over their own bodies, the girls are concerned about their plans for the future. Jodie worries she’ll never be able to drive a car and is nervous to take up her place on a space engineering course at a new college where she doesn’t know anyone. Meanwhile, Sadie is reconsidering her ambitions to become a veterinary nurse: “How am I even meant to operate on an animal without grabbing their intestines and throwing them across the room?” she asks.
Tourette’s Action Dobson is quick to point out that tics don’t have to hold people back, adding that she even knows a person with Tourette’s who’s a surgeon. “You can drive, you can fly a plane, you can have whatever job you want. There are concert pianists, singers, actors… Billie Eilish has Tourette’s. It’s not the end.”
But for those in the throes of a life-altering and undiagnosed condition, this optimism for the future can be difficult to adopt. “It’s heartbreaking,” says Charlotte’s dad, Andy, who feels like his daughter has vanished because of her condition.
“We haven’t seen Charlotte since November,” he says. “She regresses and acts like a five-year-old in an adult’s body. This was an 11-year-old girl who started high school and we lost her.”
*Name has been changed