I have Tourette’s Syndrome, and it’s not what you think

When my son was four, I noticed that he was squinting at the television. I took him for an eye test, even though I knew his vision would be perfect — and it was. Later, when he started to make noises with his throat my heart sank. I knew what this was, and I knew it had come from me.

I’ve had tics forever, or as my mother called them, “habits.” Tics are involuntary movements or noises that come on suddenly.

She blamed my father’s drinking for my “habits”, but underneath that, she blamed herself. She would plead with me to stop, holding me tight as if she could somehow love it away. Other times, my grunting and sniffing would drive her up the wall, especially if she was trying to watch Eastenders.

School was equally as difficult. Other kids questioned me, sometimes out of curiosity, sometimes meanness. I did my best to explain: no, I was not laughing, and no, I didn’t have a cough. I would explain my tics just as my mother had taught me: “It’s just a habit.” I didn’t have a ton of friends, of course. It’s hard to develop friendships with other kids when your eyes are constantly rolling.

I’d heard about Tourette’s but didn’t connect it to my experiences. I thought: “Tourette’s is the swearing thing, right?”

As I got older, I learned the art of suppression. This is basically trying not to act on your premonitory urges – the feeling that comes just before a tic – to hold the tic in, or find ways to make them less obvious when they happen.

It’s a bit like opening a packet of crisps quietly: do it slowly, a bit at a time, and maybe cover it with other noises. It doesn’t bring the same feeling of relief as a freely released tic does and can lead to more powerful urges later on, but suppression can be a useful temporary fix.

By the time Pete Bennett from Big Brother Series 7, who has Tourette’s syndrome (TS), arrived on UK screens I was an adult with a career in mental health. I’d heard about Tourette’s but didn’t connect it to my experiences. I thought: “Tourette’s is the swearing thing, right?”

When my son was diagnosed with TS, I became radically more informed. He didn’t swear, but it was Tourette’s, and I knew then that I had it, too. I’d had it all my life.

Pete from Big Brother was a positive role model. Intelligent, funny, and immensely likeable. But despite that, his screen presence really didn’t do the TS community any favours in terms of reducing the stigma we face.

Coprolalia (to give the swearing tic its proper name) is the probably the most well-known feature of TS, but affects only 10% of those diagnosed

Essentially, it reinforced the public perception that Tourette’s means swearing. He made great TV of course, and I get that. Coprolalia (to give the swearing tic its proper name) is the probably the most well-known feature of TS, but affects only 10% of those diagnosed.¹ In reality, there are as many ways for tics to manifest as there are people with the condition.

Tourette’s is a common neurological condition usually beginning in childhood and affecting roughly one in a hundred kids, according to charity Tourette’s action UK.² It’s believed to be caused by genetic and environmental factors that affect the brain regions responsible for movement.^3,4 Our brains overfire, resulting in involuntary movements of the body and vocal chords, known as motor and vocal tics.

Motor tics can involve all parts of the body, ranging from simple tics such as nose twitching or blinking to complex tics involving coordinated movements such as jumping, throwing, or combinations of simple tics.

Vocal tics produce sound, and again, they can be simple (think coughing or sniffing) or complex, such as repeating phrases which might – might – be obscene. The majority of people grow out of TS as their brains mature, but up to 40% of those of us diagnosed will tic for the rest of our lives.⁵

Tics are exhausting, annoying, and often painful — in the same way that doing step aerobics or practicing musical scales are. My chest and stomach muscles are frequently sore from harshly expelling air, throat-clearing, and clenching my core. Stress and overstimulation (sensory overload) make it worse.

Singer Lewis Capaldi was filmed recently experiencing a tic attack onstage. He’s no less capable or less brilliant because of it

Supermarkets, bright lights and (infuriatingly) walking can make life miserable for me. I can suppress for short periods if necessary, but this is an effort in and of itself. Think about trying to sneeze quietly: doable, sure, but not comfortable, and not something you want to do all day. And this is the thing: although TS is a waxing and waning condition (i.e., it drops away and ramps up again, like a wave) it remains for the most part, a constant companion.

And, of course, TS usually comes with plus-ones: ADHD and OCD show up alongside it more often than not. Per Tourette’s Action UK, co-occurring conditions happen about 85% of the time.⁶

Also, thanks to the stigma around the condition, having TS can often lead to depression, anxiety,⁷ and low self-esteem.⁸ From childhood onwards, people with TS are often bullied and excluded; the butt of bad jokes.

With the right support (and regular massages) people with TS can be as successful as anyone else. Singer Lewis Capaldi was filmed recently experiencing a tic attack onstage. The audience took over while he recovered. He’s no less capable or less brilliant because of it. That response is the gold standard for supporting us: carry on as normal, lend a hand if needed, and don’t make a big deal of it.

Whilst we should never be the punchline of a joke, between fellow tic-cers, Tourette’s can be pretty funny. My son and I laugh a lot about triggering each other (yes, that’s a thing) and we’re all used to reaching for the rewind button when our tics mean we’re missing the important bits of the film. A word of advice if you’re considering a movie night with a Tourette’s family: put the subtitles on.

When you come across someone with TS, please remember that good manners cost nothing, and that it’s rude to stare. My mother was wrong about a lot of things, but her advice on this was solid.

Featured image is an illustration of a person grabbing their own arms as if trying to prevent a movement

Page last updated August 2023