Living with Tourette's syndrome is exhausting, heartbreaking… and undeniably funny

Imagine this. You’re at an airport, waiting as your hand luggage goes through the security machine. The guy checking the screen looks grumpy and officious, and a thought crosses your mind, you wonder what would happen if you shouted, “I’ve got a bomb!” For most people that’s it, just a fleeting thought. Maybe you’d smile as you imagine the carnage it could cause, as you pick your bag up and walk to the gate.  

That’s not how it goes for me. I wouldn’t just think ‘I’ve got a bomb’, I’d shout it out at the top of my voice, then maybe even throw in a “Fuck you all” for good measure. Imagine what happens then. It’s stressful.  This is why I mainly travel by car these days.  

I’ve been living with Tourette’s syndrome since I was 12. It differs from person to person, but for me, it incorporates coprolalia (swearing), echolalia (repeating) motor and vocal tics, ADHD, OCD and sensory dysfunction, among other manifestations – you get the picture. It’s a condition that can sometimes completely overtake me, and it can be a complete nightmare. 

I was a happy wee lad before the condition took hold. I was mad on football, with a great gang of mates, a part of the community in Galashiels in the Scottish Borders, where I still live today. When the first tics started my life flipped and became incredibly difficult and challenging, just like that.  

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In the 1980s so little was known about Tourette’s, and at first no one had the first clue what was wrong with me, they just thought I was rude and out of control. I spent years in and out of hospital, drugged up to the eyeballs as doctors tried and failed to work out what was wrong.

A chance encounter with a doctor in the hospital canteen led to my eventual diagnosis, but my initial elation swiftly led to disappointment as I realised this did little to change things for the better for me. I withdrew from life. I stood at my bedroom window, watching my friends playing football without me. I skipped school. 

This could have been how my life panned out, with me hiding away, filled with shame and embarrassment, until I agreed to have a documentary made about life with Tourette’s, and that began to help things shift in me. I remember going into town after it aired and seeing how people’s attitude towards me had changed. Kids I went to school with came up to apologise to me . They had no idea this was something that I had no control over. 

Having experienced how much easier life was once people around me had more understanding I became determined to spread awareness of Tourette’s. If I could help other young people with Tourette’s to avoid even some of what I’d had to bear, then I knew it would be worth it, and I set about trying to make this happen.  

I’ve wanted to tell my story for so long, but I’d been wary about trusting someone to do it. There are aspects of Tourette’s that are undeniably funny, shocking and embarrassing and yet to live with it, day to day, can be so unbelievably hard, exhausting and heartbreaking. I worried about how this could possibly be conveyed without making a mockery of me.

Even after receiving my MBE, my fear that in the wrong hands I would be seen as someone to simply laugh at, or worse still just pitied, held me back from pursuing this. And then something extraordinary happened. 

A couple of years ago, the director and screenwriter Kirk Jones (Nanny McPhee) contacted me out of the blue. He said he was interested in my story, and that he thought it could make a great film.  

I understood that some liberties would need to be taken with the screenplay but Kirk said he knew someone who may be able to help me to write my story as it actually happened, a novelist who was also a therapist, who specialised in ADHD. I met Abbie Ross soon after and instinctively knew I could trust her too.  

Living with Tourette’s is hard, but I’ve always been determined that I didn’t want a misery memoir. Abbie understood that, and our shared sense of humour and sensitivity meant we worked easily together. The longer we worked together the less I needed to explain. 

I want the book to show how kindness, the importance of community and finding the courage to use your voice can be transformative. None of us escape adversity, but I hope that I Swear highlights that there are ways that you can find your way through.  

I Swear: My Life with Tourette’s by John Davidson is out now (Doubleday, £18.99). You can buy it from the Big Issue shop on bookshop.org, which helps to support Big Issue and independent bookshops.

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