Despite how far we've come in medicine and representation of chronic conditions, many disorders are still not well understood, including nervous system disorders, like Tourette syndrome (TS).
TS, also characterised as a tic disorder, is typically diagnosed in childhood and is often characterised by involuntary sounds and movements called tics. Tics can appear as sudden blinking, jerking of the head, jumping, grunting, whistling, animal sounds, clicking the tongue, and in some cases, swearing.
Research [1] shows that persistent tic disorders (including Tourette syndrome) may affect about 300,000 people in the UK. Recently, celebrities like Billie Eilish [2] and Lewis Capaldi [3] have opened up about their experience with TS, which has helped destigmatise the condition and increase representation. But they're not the only ones.
While much is still to be learned about Tourette syndrome, these celebs are all using their platform to bring more attention to the disorder and help people better understand the condition. Continue reading to find out about the A-listers giving people a voice to their experiences.
Lewis Capaldi
As a musician with Tourette syndrome, Lewis Capaldi does not let his condition deter him from performing and sharing his music. Since revealing his diagnosis, the singer has kept his fans informed about the effects of tics on his body. While performing [5] his closing song "Someone You Loved" in Frankfurt, Germany, the musician suffered a flare-up of his condition. As he struggled through the bridge and the final chorus, his fans assisted him. Since being open about his experience with TS, his fans have praised him for continuing to perform despite his symptoms and described his openness as inspiring.
Lele Pons
Since the release of her YouTube series, "The Secret Life of Lele Pons," the Youtube star revealed [6] that she has secretly lived with Tourette syndrome her entire life. Pons, who has nearly 52 million Instagram followers, said she first experienced symptoms when she was 9-years-old and couldn't stop touching car door handles. Fans have resonated with Pons' vulnerability and her willingness to speak out.
Joe Black
You'll have seen Joe Black on season two of "Ru Paul's Drag Race." One fan noticed his tics on the show and tweeted: "I noticed @misterjoeblack's tics on #DragRaceUK last night and googled it to find he has indeed spoken about having Tourette's. Seeing someone like me on my favourite show and being successful means the world to me. So, thank you Joe for being open about your experiences!", to which Black replied: "For those of you wondering!"
In the "The Hidden 20% [7]" podcast with Apple, Black reveals that his tics were previously dismissed as a "nervous twitch" and constantly being asked if he's on drugs.
Melanie Sykes
TV presenter and former "I'm A Celebrity ... Get Me Out Of Here" Melanie Sykes self-diagnosed herself with Tourettes syndrome last year during an episode of Alan Carr's podcast "Life's A Beach." Speaking to Carr about swearing on air, she said at the time, "I'll try not to. I've just discovered I have Tourette's. I am wired in a completely different way and I'm only just understanding it. Where I used to think 'what's wrong with me?' now I know it's everything that's right with me."
Following the release of the podcast, she took to Twitter to set the record straight, writing: "Hello there. For the record I have NOT been 'diagnosed' with Tourettes. I self identify because of my studies and understanding of the pre existing 'conditions' that are hand in hand in some autistic people. Thanks to @KieranRose7 and his insight."
Seth Rogen
In a 2021 tweet [8], Emmy-nominated actor Seth Rogen [9] shared that he has "very mild" Tourette syndrome that manifests as twitching. As someone who has seen TS in their family, he also took the time to dispel the myth that it is primarily characterised by "uncontrollable swearing" and educated the Twitterverse and Ted Cruz about what living with TS is really like.
Billie Eilish
In her interview [10] with David Letterman [11] for his Netflix series, "My Next Guest Needs No Introduction," the singer discussed her experience with Tourette syndrome. Eilish was diagnosed with the neurological disorder at 11 years old, and she said people sometimes misunderstand it. In line with her openness about her mental health, Billie is happy to discuss having Tourette syndrome. As Billie explained, opening up about TS made her realise she is not alone.
Landon Barker
Travis Barker's son, Landon, who has been following in his father's musical footsteps, addressed his Tourettes diagnosis on TikTok. He told his fans in a video, "I figured I'd speak on this eventually. But yeah, I actually do have very, very minor Tourette's. I've had it since I can remember, like preschool. I remember exactly 'cause a teacher used to accuse me of rolling my eyes at her. Because one of the tics was like that. It was like a weird thing I do with my eyes."
He explained that his common tics include head jerking and jaw movements, "Yeah, it really just acts up in nervous situations and nerve-racking environments for me. But I thought I'd just share because why not?"
— Additional reporting by Lauren Gordon
Lauren Gordon [12] is the editorial coordinator at POPSUGAR UK, where she creates lifestyle and identity content. Lauren has a degree in journalism from University of the Arts London and previously worked as a showbiz and TV reporter at The Mirror US. Lauren specialises in pop culture, hair and beauty, focusing on trends, sharing in-depth tutorials, and highlighting hidden gems in the beauty industry.
Sunni Anderson [13] is a former contributor at POPSUGAR.
