I didn't realise I had Tourette's for 15 years until my arm tics became violent

Shortly after turning 19, I noticed my arm would randomly jerk suddenly about once or twice a day.

I found it weird, but initially thought it was just a muscle spasm.

Weeks went by and it persisted so I started to feel like I was going crazy since I couldn’t explain the actions of my own body. I thought there might be something wrong with my brain, but I didn’t really consider seeing a doctor.

Around this time, I happened to coincidentally stumble across a video from YouTubers, Ethan and Hila, who I regularly watched.

Ethan was answering a question about why he moves his eyebrows so much, and he mentioned that it is because of his Tourette’s syndrome – a common neurodevelopmental disorder characterised by multiple movement tics and at least one vocal tic.

In this particular video, he mentioned how one moment he is fine and the next his face will burst with the tics, which are sudden twitches, movements, or sounds that people do repeatedly.

I’d heard of Tourette’s syndrome (TS) but only in reference to involuntary swearing so never about this side of it. I immediately fell into a YouTube rabbit hole about the condition where I heard multiple people describing the feeling I could relate to.

At the time, I thought this could explain what was happening with my arm – but I didn’t actually connect the dots with my experiences growing up.

My mum noticed the earliest tics I had and, at the time, she didn’t know what they were. Around the age of five, I’d repeat certain syllables such as the ‘s’ sound with any word that ended with that letter. Mum would casually mention it growing up but thought it was just a quirky habit I had.

Starting from the age of 13, that’s when my physical tics started to pick up more. It was ‘normal’ actions like rolling my wrists or stretching my neck. I noticed myself doing it at the time but didn’t know what it was.

Then at 15, I started making an audible chuckle noise through my nose. When I really focused on it, I could stop so I assumed it was just a normal subconscious habit.

When my arm started randomly jerking at 19, that’s when my world changed. It would go from a neutral position all the way to swinging to my opposing left shoulder. It meant that if I had something resting on or near my hand, it’d cause me to knock or launch the object away.

My mum noticed this was becoming more violent and frequent so she called a doctor for an appointment. 

After a series of tests, I was referred to a neurologist who spotted the connection between my previous behaviours and my tics at the time. She consulted with a tic specialist and that’s when I was diagnosed with Tourette’s syndrome.

I was almost relieved to finally know what it was and that my brain wasn’t injured in any way. It wasn’t until my tics began to severely progress that I realised my relief may have been misplaced.

After my diagnosis, I went multiple weeks barely looking into TS because I had a fear that I would start to influence myself with a placebo-like effect and pic up new tics. However, this effort did not stop them from exponentially increasing.

I began to develop multiple new tics every day – anywhere from small tongue clicks to swearing or vulgar gestures.

Then at about 11pm on my 21st birthday, I randomly started having extreme tics throughout my whole body – rendering me unable to walk or even speak for myself.

Reply to @frannymami y’all voted for this topic on ig so here it is as promised👍 (as u can see talking about a specific tic triggers it more)

My vocal tics caused me to breathe out a lot without breathing in enough, making me feel lightheaded. It was painful too because I was violently flailing and strongly tensing my muscles so I had to go to the hospital, but it didn’t stop until after about five hours.

The lack of control while I was fully conscious made me feel like I was trapped in my own body and I just wanted to get out.

Now my tics seem to be on a spectrum – coming, going and transforming – and it’s impossible to count them all.

My most common tics today include winking, blowing a kiss, a purring noise, saying ‘hey!’ in a high-toned voice, but sometimes more vulgar words such as f*** or a gesture of flipping the bird.

This has been a roller-coaster of highs and lows and there are some moments that I have felt embarrassed or shy about my tics in public. I have been worried that someone will misunderstand me or my tics and think I’m insulting or flirting with them.

Additionally, it has been very draining to worry about trying to mask or hide my tics in so many different scenarios in my daily life.

On the other hand, I’ve also had so much support from family, teachers, classmates, bosses and coworkers that It has allowed me to stay confident and not worry as much.

I joined TikTok in December 2019 but I started out only posting my fitness videos. I never posted a single tic, even though I had been diagnosed for about two years by this point.

I wasn’t ashamed of my tics, I just only posted fitness content or comedy posts and but would redo them if I had a tic as I felt it would distract from the point of the video.

In April last year, I kept seeing other creators post about their conditions – like ADHD, depression, OCD and, of course, Tourette’s – so it inspired me to post a video about my TS for the first time. In it, I made a joke mocking the phrase ‘you just need to relax’ being used to try and stop people from having tics.

To be honest, I wasn’t nervous about posting it at all. I never really thought of the negative comments I might’ve received or the potential loss of privacy because, to me, Tourette’s was not a huge secret in my life.

Under this video someone commented asking me: ‘What does it feel like to have a tic and before a tic?’ So I made a video responding to it – comparing the sensation of having a tic to a sneeze.

Reply to @depressedjuulpod69 comment anymore questions about Tourette’s syndrome and I’ll do my best to answer. It is TS awareness month afterall

This one started gaining traction online and has since gained over 300,000 views. That’s when I started to get an influx of positive and curious questions about my disorder – some people even said that I’m brave for opening up about my TS.

These are the types of explanation videos that I have been uploading ever since, leading me to have over 670,000 followers and almost 15million likes across all of my videos.

Of course, I receive comments from ignorant people who accuse me of faking my disorder or saying that they would hate to know someone who has TS, but there’s always much more positive comments to overshadow the negative ones.

I’ve even had other people with Tourette’s directly message me to say how I’ve positively impacted their lives. This is one of my main drives that keeps me confident enough to keep posting about my disorder. I have even gained the support of other content creators with Tourette’s syndrome, such as @thistrippyhippie, @linzrinzz and @sophie.adams04.

I always try to lead by example to show that TS is not something that you need to be ashamed about. One major goal of my push for awareness is to normalise the disorder and show people that my condition is not a joke to be laughed at or pitied either – but simple empathy goes a long way.

At the end of the day, we are not much different from anyone else, our brains are just wired differently.

I still live my life training for kickboxing, performing advanced calisthenics, working a classic retail job, and going to school to be an X-ray tech in the future.

I plan to continue posting content as long as I have the support of family, friends and my viewers behind me.

Do you have a story you’d like to share? Get in touch by emailing James.Besanvalle@metro.co.uk. 

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