I have Tourette like Lewis Capaldi, growing up was hell but now I’m proud of my condition

LEWIS Capaldi has opened up about the incredible toll Tourettes has taken on him.

The superstar has even admitted that the condition, a form of neurodiversity that worsens when stressed, could even force him to quit music.

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Tourette can be difficult to deal with, as Genna Barnett knows all too well.

The 32-year-old from Glasgow was diagnosed as a teenager and found her teenage years to be hell – but has since learned to embrace her tics.

Genna, who works for innovative charity Nesta and is a trustee of Tourettes Action, today commends Lewis for being so open about his condition and says more needs to be done to accommodate neurodiversity in all walks of life.

I first started showing signs of tics when I was four or five years old.

It was pretty bad – I was loud, I made a lot of noise and was really disruptive in my early elementary school years.

My tics were like loud hiccups and barking noises along with lots of body movement and convulsions. I would slap my cheeks or slap myself in the face.

I finally got a formal diagnosis when I was seven years old. It really took a long time – and many child psychological appointments.

I spent much of my teenage and early adult years feeling very embarrassed and ashamed. I didn’t want anyone to know and it was hard for me to talk about it. In high school I was very self conscious and didn’t want to be the weird kid.

But in my later years I was much prouder of it.

It mostly afflicted me from the age of four or five through high school and by about 14 or 15 I managed to suppress it, be it through conscious or unconscious efforts.

It still affects me and is much worse when I’m stressed or tired, but generally it doesn’t affect my daily life in the same way – I’ve embraced it as part of my personality.

At the time, my school did what it could with the information it had.

I was always given extra time on tests, but I never took it because I didn’t want to be the person sitting in the room when everyone left. Then I would have to admit to everyone what is “wrong with me”.

They did their best to support me, but looking back I feel they could have done a lot more.

My parents have always been very supportive. My sister was also diagnosed with Tourette’s and I think they found things very difficult.

We were part of a tight-knit community and I went to a small elementary school where everyone knew everyone, so we were the family that had “weird things.”

But my parents are both big supporters and encouraged me to be proud and not ashamed – they would never accept anyone saying anything derogatory to us.

And they engaged in a lot of activism. For as long as I can remember Tourette has been badly and inaccurately portrayed in the media and they have always spoken out against it.

Now neurodiversity as a concept is much more in the public consciousness and people are embracing it.

The full spectrum of disorders Tourette has been associated with, such as ADHD, OCD and autism, are much better known and so much less embarrassing than when I was young.

When it comes to high profile people like Lewis Capaldi, it can be an amazing thing to talk about their terms.

As long as they’re informed, authentic, and not stoking the fire, Tourette’s is the ‘cheat thing’ – which I don’t think he did at all. I really respect Lewis for what he’s done, in general he’s a very authentic character, there’s no superficial front with him.

As long as people are honest about the struggle that Tourette is in and let people know how you can support and learn about him, it’s an amazing thing.

I am now a trustee of the charity Tourettes Action.

Tourette’s can be very isolating. Growing up, maybe being the only person in your church and not knowing anyone like you can be lonely.

But to be able to go to those places where you see all kinds of people from different backgrounds struggling with the same everyday struggles as you are really empowering and helps you not to feel alone.

Although there is much greater awareness of neurodiversity now, I think there are so many starting points to do more. One obvious one is school.

They get personal and social education courses and I think neurodiversity should be something that is also covered in these lessons along with the diversity of the way people learn and interact.

Many more workplaces are introducing neurodiversity training and more flexible work arrangements for people who don’t thrive in traditional work settings.

In my work we have a big consultation to redesign the office because right now it’s a huge open space for hot desking and that really doesn’t work for people with neurodiversity in general or Tourette in particular.

If I make noise while people work in silence, it’s embarrassing and uncomfortable. Much more awareness is needed in public space.

We need to advance the narrative in society that is popping up in the current generation of acceptance of difference—and that applies to everything from queer issues and neurodiversity to race and ethnicity and culture.

We should acknowledge that everyone is different, and that’s actually a beautiful thing.

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