A woman with Tourette’s who says people often think she is ‘lying’ about her condition has praised Lewis Capaldi for bringing the syndrome ‘into the open’.
Grace Lily, 20, has suffered from the condition since she was four-years-old and says she often finds it embarrassing when she tics. But Grace and her mum, Hannah, 45, say Capaldi's approach to dealing with Tourette's has opened people’s eyes to the realities of the condition.
The Someone You Loved singer revealed that he had been diagnosed with Tourette's Syndrome last year. During his Glastonbury set last weekend, Capaldi struggled to finish his performance and asked the crowd to sing along with him after he lost his voice.
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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. "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,” she explained.
"It can be painful and my body is in a lot of pain quite a lot of time from the tics. 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 mum, Hannah, added: "It's amazing to see the support. 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, who runs a dog walking business from Nuneaton, Warwickshire, says she struggled to come to terms with having the condition at a younger age.
She said: "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 says she often picks up on facial expressions that she sees on TV, meaning that her tics change weekly.
She said: "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 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 that 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 added that despite the challenges of Grace's Tourette's the pair often smile and laugh about it.
She said: "She used to squeak a lot and now she sometimes has animal sounds and we do laugh about it because it is funny sometimes."
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 Tourette's. Fans praised the singer for taking his health a priority and said they 'will be here waiting' when he is ready to return.
