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The reality of Tourette's syndrome
For 22-year-old Seren Jaye, Tourette's syndrome dictates whether she steps outside her home each day. The neurological condition, characterized by involuntary tics, affects about 1% of the UK population, according to Tourette's Action. While recent headlines focused on a high-profile incident at the Baftas, those living with the condition navigate far broader challenges.
Unpredictable tics and social stigma
Jaye experiences motor twitches, vocal tics, and coprolalia-uncontrollable obscene or offensive language-which she describes as "embarrassing" in public. "Silence is really, really difficult," she says. "I can't go into a library. Even on days when my vocal tics aren't severe, entering a quiet space makes them ten times worse."
Her tics have evolved over time. After losing her sight at 17, observational tics-like commenting on appearances-diminished. But past incidents, such as involuntarily shouting "I have drugs in my bag!" near a police car (despite carrying nothing), highlight the condition's social risks.
The Baftas fallout and public perception
Last Sunday's Baftas ceremony thrust Tourette's into the spotlight when campaigner John Davidson, whose life inspired the film I Swear, uttered a racist slur on stage. The BBC apologized and launched an investigation, with Culture Secretary Lisa Nandy calling the broadcast "completely unacceptable and harmful."
Jaye called the incident "heartbreaking," arguing more care should have been taken in editing. "John Davidson and the actors were put in a horrible situation," she says. Davidson later stated the BBC should have "worked harder" to prevent the slur from airing.
"Anybody passing judgment needs to watch the film first. The incident took the light away from an amazing story."
Seren Jaye
The hidden toll of Tourette's
Aidy Smith, global ambassador for the Tourette Association of America, describes the condition as an "iceberg." While tics are visible, underlying challenges include insomnia, depression, anxiety, and co-occurring neurodivergent conditions like ADHD and OCD.
Smith explains that frequent tics-such as stomach clenching-cause constant pain and bloating. "I'm constantly in pain," he says. Davidson echoed this, noting secondary disabilities like muscle strains, joint pain, and crippling anxiety that can confine him indoors.
Jaye compares the buildup to tics as a "horrible feeling" in her back. Weighted blankets and animals-like her former rabbit-help ease the sensation. "My brain switches modes, overriding the tics," she says.
Navigating public spaces and misconceptions
DJ Versatile, a Black woman with Tourette's, emphasized that tics carry no malice. "The core of the condition is a break in the brain's signal cycle," she says. "It's not as simple as telling your body to stop."
Jaye sometimes "masks" her tics to appear professional, though the effort can feel like "my brain trying to be the class clown." She finds humor helps-when her tic repeats "chicken," laughter eases tension. But for simpler tics, like whistling, she prefers people ignore them.
Davidson, who avoided cinemas for decades after a childhood incident during E.T., called the premiere of I Swear a breakthrough. "Everyone with Tourette's felt able to tic without judgment," he said. "That was an amazing moment."
Advocating for understanding
While the Baftas incident sparked outrage, advocates stress the need for deeper awareness. "You have a right to be offended, but there must be understanding beyond surface-level perceptions of Tourette's," DJ Versatile says. For Jaye, the goal is simple: "More people need to see the person, not just the tics."
