Why We Need To Include Tourette's When We Talk About Mental Health

Amelia Perrin, 21, reveals what it’s really like living with Tourette’s syndrome.

In retrospect, I can remember the first time my (then undiagnosed) Tourette's ever became a ‘thing’. I was six years old and on the train home from Disneyland (in hindsight, probably tired and sad about leaving the most magical place on earth). I was blinking rapidly, to which my Nan commented that I was ‘too beautiful to screw my face up like that’. I was trying to offset a bout of tics, something I still do nowadays; be it screwing up my face to stop myself blinking at the speed of light, seizing my limbs up to stop them flailing, or swallowing hard to inhibit clearing my throat so frequently that people think I have a constant lurgy. All of which usually proves futile.

My six-year-old ‘quirk’ rapidly worsened with age. When I was 16, a girl asked if I was making funny noises to ‘get into character' in a GCSE drama lesson. During my A-levels, it became a running joke that sitting in the ‘P’ surname block is made hell by Amelia Perrin. I was marked down in my elocution exam because of the additional noises (at the height of my Tourette’s, it sounded like I was both speaking and, yet, somehow simultaneously beatboxing). In the end, my eyes and throat began to physically hurt so badly from exhausting attempts to repress the tics that I went to my GP in tears, where I was diagnosed with Tourette’s (with a side order of OCD, thrown in for good measure).

While the coolest things a Tourette’s diagnosis gave me were the option of a solo exam room and the ability to apply for disability accommodation at uni (I did neither), for the first time in my life I could put a name to it and silence someone's mocking by reeling off a diagnosis (cue an extremely embarrassed parent when a toddler asked ‘why I did that weird thing with my face’).

The main question I get now is why I don’t shout unprompted swear words. Coprolalia is ‘involuntary swearing’ and, whilst it is the most recognisable Tourette’s symptom, it’s nowhere near the most common (less than 10% of all sufferers have it). But whilst fidgeting, rapid blinking, throat clearing and limb movement (amongst an infinite amount of other possibilities) are all far more typical, coprolalia can appear at any time, like any other tic.

And here’s another cool thing about Tourette’s: there’s no cure. The only thing you can take to subside the effects are anti-depressants (which, yup, can make you suicidal if taken when not depressed). I was given some rather useless counselling, the most important thing I learned being a way to describe the feeling of ‘tic-ing’. It’s like a sneeze - something you can only try, and fail, to repress. While life threatening illnesses are still incurable, I don’t expect doctor’s priorities to be solving Tourette’s. But what I do expect is not to be treated like an outcast for it.

We need to create awareness around the subject, starting with the media’s portrayal of Tourette’s. For example, Tourette’s sufferers have multiple tics that arrive and leave like buses, so why are TV characters calling a granny a ‘b*tch’, but not experiencing limb spasms whilst doing so? (I know why, because accurate mental health portrayals don't make for great TV).

Tourette’s also needs to be included when we talk about mental health. The disorder is rarely included in mental health round-ups, TV shows or think pieces, yet about one in 100 children have Tourette’s (roughly the same percentage of children affected by autism). Tourette’s syndrome is a neurological disorder, and whilst it is often naturally coupled with other mental health issues, the stress caused by the physical effects of the syndrome alone can also bring on other conditions, such as anxiety and depression.

It should go without saying, but people also shouldn’t be arseh*les about it. We teach little kids not to stare when someone is different, so why is it ok for an adult to uncomfortably quiz a Tourette’s sufferer? My symptoms subside massively around my family, when I don’t have to stress about how I’m presenting myself. Tourette’s tics get much worse if the sufferer is tired or agitated.

Basically: don’t mention it to a sufferer unless they bring it up but, at the same time, give them mental health column inches and accurate movie portrayals so that they can discuss it themselves. And please remember that to a sufferer, your Tourette’s jokes are drier than the damn Sahara.

Words by Amelia Perrin. Follow Amelia on Twitter @amelia_perrin.

If you think you’re suffering from Tourette’s or want to know more, head to the resource library at Tourettes Action for helpful information.

To find out more about World Mental Health Day, click here.