Tourette’s syndrome advocates and researchers say celebrities like Billie Eilish are raising awareness of the condition by openly talking about it.

In a recent interview with Amy Poehler, the singer discussed how she constantly has to suppress her tics because of misunderstandings about the condition.

The Kids Research Institute senior research fellow Dr Melissa Licari says there have been changes over the last few years on how people speak about Tourette’s because of celebrities.

“Having people like Lewis Capaldi show their tics on stage has gone a long way in terms of raising awareness of not just Tourette’s, but also the challenges associated with it,” she says.

Dr Licari says it has also been motivational for people living with Tourette’s.

“It shows people living in the community who have the condition how success is possible, and also probably goes a long way in making them feel a little bit less lonely.”

Tourette’s advocate Isaac Mulcrone agrees and says it is refreshing to see positive representation following what happened at the BAFTAs earlier this year.

“Not everyone swears and says obscene things. Some do, which is really important to understand, but a large number of people with the condition don’t have that type of Tourette’s syndrome,” he says.

Coprolalia is an involuntary vocal tic, which makes people uncontrollably swear or say taboo things.

According to The Lancet Neurol, this tic is present in only 10-15% of people diagnosed with Tourette’s.

“Billie Eilish is a great example of how Tourette’s syndrome can manifest differently from person to person,” Mr Mulcrone says.

“Tics can also be painful, and they can actually alter the way you live. I have tics that are quite painful, which can make me hyperventilate.”

Senior lecturer at Curtin’s School of Population Health Dr Linda Portsmouth is an expert on health promotion and media.

She says celebrities disclosing health diagnoses can have a big impact.

“It opens people up to more understanding and it makes them seek more information.

“If they have that health issue themselves, it can influence how they feel and help them to not internalise the stigma or negative stereotypes associated with their condition.”

Dr Portsmouth says media representation can create strong feelings.

“I think the secret with us humans and our media is that if we can connect emotionally with something, it can pull us into someone else’s point of view and have the chance to change hearts and minds about things we actually may not have a lot of experience in ourselves.”

For people living with Tourette’s syndrome like Isaac Mulcrone, they hope the conversation around it will continue beyond celebrity diagnoses.

“We shouldn’t just be talking about it when something happens. We need to be talking about it more regularly and having really informed discussions about what Tourette’s syndrome looks like.”