Katie Roche's Blog

Melanie Sykes: You can't self-diagnose with Tourette's Syndrome

Last Monday, TV presenter Melanie Sykes revealed she had discovered she has Tourette’s Syndrome. After a flurry of articles describing her as having a Tourette’s diagnosis, she clarified that she was self-diagnosed. She had simply read about Tourette’s and found it was a common co-morbid condition of Autism and ADHD, both of which she has been diagnosed with.

Hello there. For the record I have NOT been 'diagnosed' with Tourettes. I self identify because of my studies and understanding of the pre existing 'conditions' that are hand in hand in some autistic people. Thanks to @KieranRose7 and his insight#truestory

— Melanie Sykes (@MsMelanieSykes) July 17, 2023

I'm not a fan of self-diagnosis. But I find it especially infuriating when celebrities. Many people turn to self-diagnosis because they can’t access an assessment on the NHS. Or they can’t afford one where the country doesn’t have a public health system. But Sykes faces none of those barriers. She has money. She can afford to pay for a private assessment and bypass the GP. She has no good reasons to avoid seeking a formal diagnosis.

I also found Syke’s actions particularly annoying because I have Tourette’s myself. It has been formally diagnosed by a neurologist after an NHS assessment. Like 90% of people with Tourette’s, I don’t have any tics that cause me to swear. But when I tell people I have Tourette’s, the first thing they mention is swearing. It makes for a frustrating experience when trying to access support. Plus, swearing tics aren’t the same as swearing voluntarily. Verbal tics are typically characterised by saying the same word or phrase repeatedly and out of context. That’s not the same as saying a swear word by mistake.

What is Tourette’s if it’s not swearing? To be diagnosed with Tourette’s, a person must have at least one motor tic and a vocal tic for at least one year. The tics must start before the person turns 18. But some people (including me) aren’t diagnosed until adulthood. Tics can be subtle. For instance, blinking. Or they can look like other conditions. For example, a person can have tics that cause coughing or sniffing. An onlooker may assume the person has a cold. In some circumstances, a tic can be disguised as a meaningful action or even suppressed for a short time.

Moreover, self-diagnosis can be dangerous. Other neurological disorders can cause tics or movements that resemble tics. Some of these can be very serious. For instance, some types of Epileptic seizure may resemble motor tics. As can other movement disorders. Coprolalia (involuntarily saying swear words) can also occur during or after an Epileptic seizure. It can happen in rarer neurological disorders too. As well, someone can experience functional tics, which are thought to be caused by psychological stress. A neurologist must rule out these conditions before diagnosing Tourette’s Syndrome.

I can't say if Sykes has Tourette's or not. Only a doctor can. But none of what Sykes describes are typical Tourette's symptoms. Swearing by accident on TV is not the same as a verbal tic. Indeed, lots of people have mistakenly sworn on live TV. Live TV is actually broadcast with a slight delay so that the footage can skip forward when someone does or says something inappropriate. (You might have noticed a live program “jump” forward when this happens). It’s not perfect, which is why sometimes rude language or gestures get broadcast by mistake.

Melanie Sykes’s comments have trivialised Tourette’s Syndrome. She has furthered misconceptions that stop people from seeking a diagnosis. Syke’s comments have undone a lot of good work that others have done in discrediting stereotypes. Celebrities have a big platform. They can use that platform for both good and bad. Celebrities need to think before they publicly diagnose themselves with medical conditions. Careless comments can do untold harm to all those who genuinely have the condition.

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