Explainer | What is Tourette’s syndrome, the condition that affects Billie Eilish and Lewis Capaldi, award-winning musicians?
- Tics, sudden, brief movements or sounds, are the main symptom of Tourette’s syndrome, and observers may think a sufferer is ‘crazy’ or ‘uncontrollable’
- A neurological condition named after the 19th century French doctor who identified it, its sufferers can be taught to mask symptoms, and may receive medication
Mary was 14 when she suddenly developed verbal tics. At first, they were quiet, though disconcerting for her. She tried to mask the sounds she made involuntarily by grunting.
She also began to have motor tics and head tilting. She masked these with other movements.
When she tried to hide a tic, though, another developed. Her classmates did not understand what was happening to her. Her doctor referred her for behavioural therapy, but had to supplement it with medication when the tics became debilitating and interfered with normal conversation.
Dr Keith Hariman, a Hong Kong-based specialist in psychiatry, says the diagnosis for Mary – a real-life though anonymous case study – is Tourette’s syndrome.
A person with this neurological disorder develops motor and/or vocal tics, sudden brief intermittent movements or sounds that may be simple or complex and may or may not happen at the same time.
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Tourette’s syndrome was named after French neurologist Gilles de la Tourette. In 1885, he described a handful of patients who suffered from a disorder characterised by involuntary movements, echolalia (the meaningless repetition of words spoken by another person), echopraxia (involuntary imitation of someone else’s actions), coprolalia (involuntary use of obscene language) and strange, uncontrollable sounds.
Vocal tics can include sniffing, throat clearing, humming, tongue clicking or grunting, though they can include shouting out the odd word or phrase.
The stereotypical Tourette’s case portrayed in the media usually depicts a teenager shouting an obscenity suddenly and for no reason, and then being overcome with embarrassment as onlookers throw him or her dirty looks.
While this is a Tourette’s symptom, it affects only a minority; 90 per cent of people with the ailment do not have coprolalia.
Motor tics can include repetitive rapid blinking, shrugging for no apparent reason, nose twitching, sudden head jerking, grimaces, touching objects or people randomly and unexpectedly, spinning around, imitating the actions of someone in the vicinity, or leaping up and down.
As Hariman observes, Tourette’s is hard to live with – “especially as many people in society do not understand what the condition is. Some people might judge those with Tourette’s syndrome to be ‘crazy’ and ‘uncontrollable’.”
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About one per cent of the population suffer – some more severely than others. About one in 100 schoolchildren like Mary have it, and it is much more prevalent in young people.
According to the US Centres for Disease Control and Prevention, Tourette’s symptoms usually begin between the ages of five and 10, and it is three to five times more common in boys than girls.
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The “Wish You the Best” and “Forget Me” singer began to notice a shoulder twitch. It happened frequently, he was quoted as saying, whether he was excited, stressed or just happy.
In 2023 he made a documentary with Netflix: Lewis Capaldi: How I’m Feeling Now, which sheds important light on his experience with Tourette’s, with which many sufferers will identify.
In December 2023, Capaldi posted a note on X – formerly Twitter – telling his fans he continues to work to manage the condition and is doing much better with the right support.
What causes Tourette’s? There are some suggestions it could be a heritable disorder, says Hariman, “though there is no single gene identifiable that causes Tourette’s”.
In a May 2022 interview with American talk show host David Letterman, she made a pronounced tic, jerking her head sharply to one side. This caught Letterman off guard; he wondered if she was responding to the irritation of a fly.
“It’s just a tic,” Eilish explained. “I have Tourette’s.” Keep a camera on me long enough, she told Letterman, “and you’re going to see a lot of tics”.
Eilish has said, “I never don’t tic at all.” The main tics that afflict her constantly, “all day long”, include ear wiggling, raising an eyebrow, clicking her jaw and flexing one arm, then the other. She described it as exhausting.
When people notice, she says they respond to her tics either by laughing – because they think she is trying to be funny – or by making a face.
Tics are diagnosed clinically, says Hariman, so anybody that is battling the condition needs to be observed by a medical practitioner. There are no medications that will completely “cure” tics, he says.
Eilish has said her tics decrease when she is focused on tasks, such as singing or horse riding. She says she almost never has them when she is performing.
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In severe cases, or when behavioural training is insufficient and the condition is debilitating enough to cause serious psychosocial, physical and functional problems, medications may be prescribed.
People can – and often do – grow out of Tourette’s.
Just having a clinical name, a real diagnosis, for a condition that seemed crazy, can be life-changing for sufferers.
Eilish has said that sometimes people’s responses to her tics can be offensive. A diagnosis has helped her because she can now spell out what causes them – as she did in the Letterman interview.
“It’s not that I like it, but I feel it’s part of me. I have made friends with it. And so now, I’m pretty confident in it.”
