When global superstar Lewis Capaldi began experiencing tics and losing his voice during his Glastonbury Festival performance, his fans came to the rescue. A crowd of thousands sang Capaldi’s lyrics back to him, filling the silence. However, for the average person with Tourette syndrome (TS), the public’s reaction to tics is often far less welcoming. Staring, pointing, and nasty comments are common experiences for many individuals with TS.
Liv Elliott, a support worker on the Gold Coast, and Charlotte Berry, a student from NSW, have both dealt with negative reactions to their tics. Elliott avoids solo outings due to the fear of being called out or confronted because of her tics. She hates the possibility of receiving comments or being pointed at. TS is a neurological disorder characterized by rapid, repetitive involuntary sounds and movements called tics. It typically appears between the ages of two and 21, and there is no cure for the condition.
Despite an estimated one in 100 Australians living with TS, the condition is widely misunderstood. Many people fail to understand that TS affects each individual differently. Berry, who was diagnosed with TS last year, has dealt with snide remarks from her peers and unsupportive workplaces. It can be an isolating experience. Both Elliott and Berry emphasize the importance of trying to understand TS and treating individuals with the condition with empathy and respect.
Capaldi’s recent performance at Glastonbury brought Tourette’s back into the public discussion. While the crowd helping Capaldi was heartwarming, it also served as a reminder of the basic human decency that many people lack when it comes to TS. Misconceptions contribute to the lack of understanding about the condition. People often mistakenly believe that individuals with TS will simply “grow out of it,” when in reality, TS is a lifelong condition. Another misconception is that TS is solely a swearing disorder, when in fact, only about 20% of people with TS experience coprolalia (involuntary use of obscene language).
There is a need to shift attitudes and educate others about TS. People with the condition should not be dismissed as unintelligent or treated poorly due to their tics. Maysey, president of the Tourette Syndrome Association of Australia, emphasizes the importance of treating individuals with TS with human decency and understanding. Tics should be accepted as involuntary and not aimed at others. Maysey urges people to recognize that everyone is struggling with something and to treat others with kindness and respect.