Singer's tour cancellation puts spotlight on 'embarrassing' condition

The cancellation of Scottish singer Lewis Capaldi’s international tour has left thousands of fans disappointed – but it’s also shone a light on the struggles faced by people with Tourette syndrome.

The 26-year-old singer revealed in 2022 that he’d been diagnosed with Tourette, with his condition often manifesting in involuntary physical tics such as shoulder and head twitches.

After struggling to get through his performance at the Glastonbury music festival over the weekend, Capaldi revealed on Tuesday he will be taking a step back from touring as he learns to adjust to the impact of Tourette syndrome.

Tweet from @Camp4 What is Tourette syndrome?

Tourette is a neurological condition that affects one in 100 people.

The condition can manifest in childhood or later in life, as in Capaldi’s case, and is characterised by repeated, involuntary tics.

These tics can be vocal, such as grunting or saying seemingly random words, or they could be physical tics, such as head-nodding or blinking.

More complex tics can include specific words or movements.

One of the most well-known, and stigmatising, Tourette’s symptom is coprolalia – the involuntary outburst of obscene words or socially inappropriate and derogatory remarks or gestures.

Some influencers with Tourette are using social media platforms like TikTok to help destigmatise tics.

Mandy Maysey, president of the Tourette Syndrome Association of Australia and mother of three children with the syndrome, said people with Tourette often also suffer from Obsessive Compulsive Disorder, anxiety, depression, autism, or Attention Deficit Hyperactivity Disorder.

While the exact cause of Tourette is not known, it is thought to have a genetic component; Ms Maysey said if you have a family member with Tourette, you are 20 times more likely to have the condition.

Is there a cure?

There is no cure for Tourette, but there are some management strategies that can help reduce tics, often with the aid of a psychologist.

Ms Maysey said while some people find medication can help, others find the prescribed medicine – which are often antipsychotics – leave them feeling “horrible” and detached, like they are underwater.

Deep Brain Stimulation (which sends electrical impulses to a specific area of the brain) has emerged as a potential option to reduce tics, but it is expensive and there are not many surgeons experienced in the technique.

For many people with Tourette, avoiding overstimulation and heightened emotion – meaning everything from excitement to anxiety – could help reduce tics.

Capaldi referenced this in his announcement, noting he needs to take care of his mental health as well as his physical health in order to continue with his career.

Stigma still exists

Ms Maysey said while society has come a long way, there is still a “massive stigma” when it comes to Tourette syndrome.

Much of this stigma comes down to a lack of knowledge about the condition, especially when it comes to coprolalia.

It’s important to note, while there’s a chance someone with Tourette may involuntarily be saying something rude that’s on their mind, coprolalia tics often have nothing to do with what the person is thinking.

“Just even going out in public and having people stare at you is massively embarrassing [and] anxiety inducing,” Ms Maysey said.

“You get kids [who] can’t face school because they get ridiculed. I know grownups that have been ridiculed in the street. People will be quite indignant: ‘Why are you doing that? Will you just stop it?’

“If you’ve got that everywhere you go, it’s really wearing and it’s really exhausting. And sometimes you just have to wonder whether you’ve got the mental capacity to go out and deal with people on any given day.”

The condition can also affect job opportunities, particularly work that relates to customers.

One of Ms Maysey’s children was working in retail when their Tourette syndrome became more apparent – they were then put in the back room away from customers to avoid an “embarrassing” situation for everyone.

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“It’s exhausting, physically and emotionally,” she said.

“We get a lot of people with Tourette [and] people automatically assume they’re mentally ill, or that they’re on drugs or they’re drunk.

“So it’s about taking that little step back and using a lens of kindness when you’re looking at the world around you.”