What Tourette Syndrome Really Looks Like: My Experience

Before I was diagnosed, I didn’t know much about Tourette Syndrome. The only exposure I’d had was through a few characters in TV shows, and watching Pete Bennett on Big Brother. He was a fun, eccentric guy whose tics included hitting his throat and involuntary swearing. 

Pete’s series aired in 2006 — around the time I was diagnosed. So when the doctor told me I had Tourette Syndrome, I was doubtful. I wasn’t shouting out words, let alone swear words. My limbs just had a mind of their own.

This just shows the lack of awareness there was back then, and for some people that hasn’t changed. Social media has no doubt improved awareness, but many still only associate TS with humorous outbursts. And whilst that is part of TS for some people, it isn’t for the majority. There’s so much more to it than shouting ‘wankers’ while walking down the street.

Facts About TS

As I’ve said elsewhere, every single person with TS experiences it differently. It’s a complex condition and there is no way I would suggest I know everything about it. Since it’s Tourette’s Awareness Month (15 May–15 June), here are a few facts I do know — for the fact lovers out there:

• Having tics does not mean that you have Tourette’s. There are plenty of reasons someone may have tics. To be diagnosed with TS you need to have had at least two motor tics (physical movements like blinking or jerking) and one vocal tic (such as a sound or word) for over a year.

• Coprolalia – where you shout out explicit words – only affects approx 10% of TS sufferers. Luckily, I’m not one of them. I believe that the condition would be much more difficult for me to manage if I did, especially as I’m quite a quiet, and at times, shy person.

• Tourettes is a neurological condition not a psychological one. Although it often seems like there must be a psychological link due to tics fitting the situation perfectly, like when my middle finger tic comes about when someone is annoying me, it isn’t. TS isn’t a mental disorder and can’t be cured with therapy!

• Tics are completely involuntary. People with TS do not have control to completely stop their tics, which means hearing the phrases like: ‘just don’t’, ‘stop that’, ‘be quiet’ or ‘can’t you just do a different tic’, is really really annoying. They can sometimes be suppressed briefly, but it’s exhausting — and for me, they always come out eventually. I used to suppress tics at work or at the gym, but it was absolutely exhausting so I now just let them out and try to not care about what people think – although that’s much easier said than done. 

Watching someone tic makes me tic — it’s like Tourette’s is contagious, but only if you already have it.

• There is no cure for TS, but various treatments do exist. When I was fed-up of slapping all of the colour out of my face in my mid-twenties, I did try some medication but it wasn’t for me. I felt like a zombie and decided I’d rather be in pain than feel nothing at all. I’ve never considered it since, although I know it can work for a lot of people.

• Tics can improve or disappear with age – for those who develop the condition as a child there is a chance that they won’t have tics once they reach adulthood. But they can also get more severe as time goes on, as was the case for me. 

• Tics can be transient – new tics can develop and old ones disappear. Just because you develop a tic doesn’t mean it’s here to stay, which I was especially thankful for when I started headbutting the boxing bag at the gym a few months back. Luckily I’ve not done that again since – it was pretty painful!

• Watching someone tic makes me tic! When my niece, who also has TS, and I are together we can set each other off. If one of us tics it’s very likely the other will immediately start, which often sets us off laughing. The same happens when I watch someone tic on TV, listen to someone talk about their TS, or read a book about it.

Tics Are (Kind Of) Contagious

There are plenty more facts or interesting tidbits that I could include but I’ll finish the list with something that I’m not entirely sure is a fact but it is definitely the case for me; 

• Tics are catching. Now, to be very clear, I don’t mean that someone who doesn’t have tics can catch them from someone with TS. Sometimes I ‘catch’ tics from others with TS — even without being near them! I enjoy watching documentaries about the condition but I run the risk of picking up the tics I see on screen. For example, one of my least socially acceptable tics started when I was watching a show about John Davidson (star of numerous TS documentaries since the 80s) and someone in the show had a tic where they flipped the middle finger – from that day on, this less-than-family friendly movement has been part of my repertoire.

My Personal Tics

For those that are interested here is a list of some of my tics past and present (I can’t remember them all though and sometimes don’t even notice them); 

Daily tics; I experience these tics numerous times each day: 

• Finger clicking
• Whistling
• Tapping the desk (or whatever is in front of me)
• Head jerking
• Tapping my forehead
• Shaking my hand side to side
• Slapping my forehead
• Screwing up my face

Weekly; these tics generally happen a few times a week or less, but luckily not daily:

• Flipping the middle finger
• Punching my face (a black eye is often evidence of this tic)
• Leg jerks
• An explosion  – which is an explosion noise with an accompanying hand gesture; and lastly two new ones that I developed last week
• A ‘tsss’ sound and throat clearing

Previous tics; tics that used to be regular but haven’t been seen for a while:

• Cheek slapping 
• Throat punches 
• Arm jerks
• Devil horns 
• And finally the ‘finger slap’ which was really popular in the ‘90s and early ‘00’s. For those that don’t know it’s where you slap your index finger into your middle finger so it makes a cool noise. Interestingly I couldn’t do this when I tried, I could only do it as a tic!

I’d love to hear from others with TS — what’s your experience? Did I miss any key facts? Or if you’re just curious, feel free to ask questions — I’m happy to help bust some myths!

Please also check out the new #Misunderstood campaign by Tourettes Action and their film “Don’t Let Me Be Misunderstood” – https://www.tourettes-action.org.uk/192-tourettes-awareness-month-2025.html