NUNEATON, United Kingdom — A young woman with Tourette syndrome claims people think she’s “lying” about her condition. However, stars like Billie Eilish and singer-songwriter Lewis Capaldi’s approach to dealing with TS are inspiring her to bring her condition “into the open.”
Grace Lily, a 20-year-old from the United Kingdom, has dealt with Tourette syndrome since she was four years-old and says she often finds it “embarrassing” when she tics. Grace and her mother, Hannah, say Capaldi revealed that he had been diagnosed with TS last year. The “Someone You Loved” singer struggled to finish his set at the Glastonbury music festival in June 2023 due to the disorder.
What is Tourette syndrome?
Tourette syndrome is a neurological disorder characterized by repetitive, stereotyped, involuntary movements and vocalizations called tics. The disorder is named for Dr. Georges Gilles de la Tourette, the pioneering French neurologist who in 1885 first described the condition in an 86-year-old French noblewoman.
The early symptoms of TS are typically noticed first in childhood, with the average onset between the ages of three and nine. TS occurs in people from all ethnic groups however, males are affected about three to four times more often than females.
Tics are classified as either simple or complex. Simple motor tics are sudden, brief, repetitive movements that involve a limited number of muscle groups. Some of the more common simple tics include eye blinking and other vision irregularities, facial grimacing, shoulder shrugging, and head or shoulder jerking.
Grace says a lot of people don’t take into account the physical pain from ticking and see it “just as swearing” and think she is “lying” or “joking” about it.
“It was just nice to see so many people be understanding of what Lewis was going through,” says the 20-year-old, who runs a dog walking business, in an online video.
“I never used to tell anyone that I had it up until about a year ago and that’s mainly because of Lewis Capaldi and Billie Eilish. It can be painful and my body is in a lot of pain quite a lot of time from the tics,” Grace explains.
“I do get quite embarrassed about it as a lot of people think Tourette’s is just swearing and they ask me what I’m doing when I’m ticking. When I tic in front of someone they always think I’m joking or lying about having Tourette’s.”
Grace’s mother says seeing how Capaldi has dealt with his diagnosis has inspired them to be more open about her daughter’s condition.
“It’s amazing to see the support,” adds Hannah. “We felt for him and it made us quite tearful. He’s got that support because of the person that he is as well. Because he talks about it so much it’s really brought out into the open that it isn’t just swearing.”
Grace says she struggled to come to terms with having TS at a younger age.
“I think I was in a bit of denial when I was younger and I thought I could prove it to people that if I’m not swearing then they wouldn’t think I’d have it.”
Grace adds she often picks up on facial expressions that she sees on TV, meaning that her tics change weekly.
“When Lewis brought his documentary out on Netflix, we couldn’t watch it because people with Tourette’s take on others tics from seeing people do it,” the 20-year-old notes.
“The only time the tics stop is if I’m really focused on something because if I’m not focused then it gets worse. It’s any emotion that you feel quite strongly about makes you quite ticky. I went to the doctors the other week and I was really nervous and it made me want to have vocal tics which I don’t really have. It feels almost like a build up on the side of your body until you tic and then it comes back as soon as you’ve released it.”
Hannah says that despite the challenges of Grace’s Tourette syndrome, the pair often smile and laugh about it.
“She used to squeak a lot and now she sometimes has animal sounds and we do laugh about it because it is funny sometimes,” Grace’s mother says.
Lewis Capaldi announced he would be taking a break from touring following his Glastonbury set. He added that he is “still learning to adjust to the impact” of his condition.
South West News Service writer Jake Meeus-Jones contributed to this report.