9 Celebrities Breaking the Stigma Around Tourette Syndrome

Updated on April 5, 2023 at 11:35 AM

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 characterized as a tic disorder, is typically diagnosed in childhood and is often characterized 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 shows that persistent tic disorders (including Tourette syndrome) may affect about 1.4 million people in the US. Recently celebrities like Lewis Capaldi have brought more attention to the condition by opening up about their experience with TS, which has helped destigmatize the disorder and increase representation. In his new Netflix documentary "How I'm Feeling Now," Capaldi says TS first appeared as minor tics as a kid, and has since gotten worse with age. "This twitch became out of control. I didn't know what it was at the time. I've since learned that I have Tourette's," he says in the documentary.

Capaldi isn't the only celeb to speak out about TS, though. Billie Eilish, Seth Rogan, and many other celebs have also been open about their experiences with the disorder. While much is still to be learned about Tourette syndrome, these celebs are using their platforms to bring more attention to the disorder. Check out the stars giving people a voice to their experiences.

Lewis Capaldi

Lewis Capaldi got vulnerable about his experience with Tourette syndrome, as well as hypochondria, in his new Netflix documentary "How I'm Feeling Now." His experience with minor tics began in childhood but became "out of control" as he got older, he says in the documentary.

At first it was confusing not knowing what he was going through. But when the singer was finally diagnosed, he felt a sense of relief, especially being able to tell others what was going on with him. "I got told I had Tourette's a week ago. Know how many people I've told I have Tourette's since then? It's outrageous. People think I'm bragging," Capaldi says. "It's just good to like [say], 'I've got this thing by the way. This is what it makes me do.' Do you know what I mean?"

Since revealing his diagnosis, the singer has kept his fans informed about the effects of tics on his body. While performing 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.

At times Capaldi's TS has gotten so severe that he's had to take a hiatus from singing altogether. In the documentary, the "Someone You Loved" singer says he took a four-month mental health break from recording his album. Capaldi also recently discussed taking a step back from music due to the condition.

Billie Eilish

In her interview with David Letterman 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, talking about TS made her realize she is not alone.

Lele Pons

Since the release of her YouTube series, "The Secret Life of Lele Pons," the Youtube star revealed 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's vulnerability and her willingness to speak out.

Tim Howard

As a child, former Manchester United goalkeeper Tim Howard experienced the first symptoms of Tourette syndrome between the ages of 9 and 10, he said during an episode of "UTD Podcast." Despite TS, Howard found a place where he could be himself and thrive, in many sports, but particularly on the soccer field.

James Durbin

During the 2011 season of "American Idol," James Durbin stood out due to his high-energy performance style and having both Tourette and Asperger's syndrome. While his tics were evident on camera, singing helped relieve them. Years later, despite having to manage his condition, Durbin is still singing and touring.

Seth Rogan

In a 2021 tweet, Emmy-nominated actor Seth Rogan 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 characterized by "uncontrollable swearing" and educated the Twitterverse and Ted Cruz about what living with TS is really like.

Jamie Grace

Grammy-nominated singer, songwriter, and producer Jamie Grace filmed a Facebook Live video for the Tourette Association of America about the challenges she faces living with Tourette syndrome. As she explains during her livestream, "I have Tourette's syndrome. I was diagnosed when I was 11 years old and it's definitely been challenging." But she's remained positive, continuing to make music and show fans that TS does not define her or deter her from living life to its fullest.

Dylan C. Brady

Country singer, Dylan C. Brady was diagnosed with Tourette syndrome at 13 years old. As a result of his diagnosis, Brady became a youth ambassador for the Tourette Association of America, performing his music and speaking at schools and camps about celebrating people's differences.

Anilee List

Singer and former "American Idol" contestant Anilee List was diagnosed with Tourette syndrome at 10 years old, she said during her audition. She has been actively involved with the Tourette Association of America since then, performing at several events, including Disneyland and the TAA National Conferences in Washington DC. Despite her struggles as a child, Anilee is now reaching even greater heights. In recent years, her primary focus has been on performing live music.