Malaysian content creator shares his journey living with Tourette syndrome

Chew hopes his videos will help people better understand Tourette syndrome and look beyond the tics. Photos: KZ Chew

For years, KZ Chew, 36, tried to hide his tics.

A sudden movement or sound could draw unwanted attention whenever he was out in public.

People would stare, ask questions or tell him to stop, often assuming that he was doing it deliberately.

But now, the Penangite is choosing to put his tics in front of the camera. Through his TikTok and Instagram accounts, he documents his life with Tourette syndrome, hoping to replace misunderstanding with awareness and judgment with empathy.

Chew uses social media to share his experiences and raise awareness about Tourette syndrome.

“I was initially nervous about showing my tics online,” he says.

“But I realised that if I could use social media to help people understand what Tourette looks like, perhaps I could turn something I used to hide into something meaningful,” says Chew in an interview.

Tourette syndrome is a neurological and neurodevelopmental disorder that causes repeated, involuntary movements or sounds known as tics. Motor tics can include movements such as blinking or shrugging the shoulders, while vocal tics may involve sniffing or clearing the throat.

What started as a seven-day online experiment last month while Chew was learning how to create content soon became something much more personal.

“What surprised me was that it became more than just learning content creation. It also helped me become more comfortable with sharing something I had been conscious about for many years.

“I hope people can understand more about how a person lives with Tourette’s in their daily life. Hopefully, people can become more patient and less quick to judge when they see something they don’t understand, while people with the syndrome can feel more comfortable being themselves,” says Chew, who used to work at a consulting firm in Kuala Lumpur.

Currently, he is taking a career break to build his social media presence while exploring his long-term professional goals.

Chew’s videos have received thousands of likes and positive feedback from netizens. User @ameixing.adventures said: “Your videos always bring a smile to my face. We all need to be a little braver and a little kinder to everyone we meet.”

Another user, @masayuzahrahbinti, shared: “I have a son who’s schizophrenic and autistic. It melts my heart to know that there’s more awareness and what you’re doing is simply amazing to spread awareness.”

More than just a tic

Tics can also change over time in terms of location, frequency, type and severity, says consultant neurologist and physician Assoc Prof Dr Nor Amelia Mohd Fauzi.

Dr Nor Amelia says greater awareness and understanding of Tourette syndrome can help reduce stigma surrounding tics. Photo: Assoc Prof Dr Nor Amelia Mohd Fauzi

“Tics start as unpleasant premonitory urges that build up in body parts and may cause discomfort if suppressed. Tourette syndrome typically occurs during early childhood, between the ages of two and 15. It is more common in male children, with boys being approximately three to four times more likely than girls to develop the condition,” says Dr Nor Amelia.

The senior lecturer at the department of medicine at Universiti Teknologi Mara (UiTM) in Selangor said the syndrome affects approximately 1% of school-age children and adolescents worldwide, or about one in 160 children.

“In Malaysia, the exact prevalence is largely unknown due to a lack of standardised clinical data. Many cases are misdiagnosed due to limited clinical specialisation, with symptoms frequently overlooked as behavioural issues, particularly in children.

“It is often underreported due to low public awareness, social stigma and cultural misconception,” says Dr Nor Amelia.

For Chew, this lack of understanding has been a familiar experience since childhood.

He remembers being told to stop his tics and hearing hurtful comments from people around him. One recent comment was particularly upsetting: “Do that to me and I will slap your face.”

Another phrase he heard frequently was “Diamlah” (be quiet) – until he became almost numb to it.

He also recalls a neighbour telling him that if he was sick, he should move away.

Despite living with tics, Chew (second from right) makes the most of life.

Yet Chew believes things are slowly changing.

“More people today seem willing to ask questions and understand rather than immediately judge,” he says.

Chew says the syndrome has become part of his life, but there are still challenges that others may not notice.

Quiet places such as cinemas and libraries can be difficult. Going out in public can also require mental preparation because he knows people may stare or misunderstand.

Social gatherings are particularly challenging too, he adds.

“With many people around, the chances of getting some weird stares will be higher.”

His condition has also affected his experience in finding work. Despite studying hard at university, getting a job after graduation was not easy.

He is grateful, however, for the support he received from his previous workplace, particularly his boss, who hired him despite knowing that he had Tourette syndrome.

For Chew, his relationships have also taught him something important. “Some people may say they are not bothered by my condition, but their actions sometimes tell a different story.

“At the same time, the syndrome has helped me recognise the people who genuinely care about me. People that care about you will accept who you are.”

Understand, don’t judge

Dr Nor Amelia says tics are involuntary, and constantly telling someone to stop or control them can increase stress.

The best way to support someone with Tourette syndrome is to understand that their tics are involuntary and create an environment where tics are understood rather than constantly noticed or corrected. For family members, avoid telling the person to “stop” or “control” their tics.

“At school, teachers can educate classmates about Tourette syndrome, with the agreement of the student and family. Children should not be punished for their tics, and reasonable support such as breaks, extra time for tests or a quiet place to work can be provided when needed,” says Dr Nor Amelia, who is also the advisor for the Tourette Association of Malaysia (TAM). Founded in 2024, TAM is the country’s first official support group and non-governmental organisation for individuals with Tourette syndrome.

At the workplace, create a respectful and inclusive environment, adds Dr Nor Amelia.

“Focus on the person’s work performance rather than their tics. The goal is to make them feel accepted, respected and included without making their tics the focus of attention.

“Treatment may not always be necessary, particularly when symptoms are mild. For those whose tics interfere with daily life, options include medication and behavioural therapy such as Comprehensive Behavioural Intervention for Tics,” she says.