My Tourette’s Story

Posted Mon 6th Oct 2025 at 12:51
by Lucy Eggleston

Share

Hi, I’m Lucy, I’m 20 years old and from Reading.

Living with Tourette’s has been a long journey and for many years I didn’t even know that’s what I had.

My tics first appeared when I was about 10. I used to clear my throat and roll my eyes a lot, but back then people just thought it was a habit. Teachers told me off for it and it even ended up in my school reports. Looking back, it was really frustrating because I couldn’t control it and I didn’t have the words to explain.

Things got much worse in 2022. Out of nowhere my neck started flicking back over and over one night while I was playing a video game. It went on for hours and the pain was unbearable. When it carried on for days, my mum took me to hospital. That was the first time I heard the word “tics”. It was frightening, I remember feeling like I had no control at all of my body.

The next couple of years were a struggle. I got diagnosed with PANDAS, which can also cause tics, and later on Lyme disease and other infections. Finally, in August 2024, I was diagnosed with Tourette syndrome. It was such a relief to finally understand what was going on and to have an explanation for something I’d lived with for so long.

Life with Tourette’s isn’t easy. My neck is often in pain from repeated movements, I struggle to sleep and it can be embarrasing in public. But I do feel like I’m starting to adapt now, and most people are actually really kind and understanding about it. I study part time at college, working towards my maths and English GCSEs online, and I’m lucky to have brilliant support from my tutors. In the future I’d love to go into acting or performing arts. I’m also getting treatment for my other conditions, which I hope might help reduce some of my tics over time. Most importantly, i’ve discovered an amazing community of people with Tourette’s who make me feel supported and understood.

Tourette’s has changed me in both good and bad ways. It can be painful and disabling, but it’s also taught me to appreciate things more deeply and to find strength in myself I didn’t know I had. I feel hopeful about the future and grateful for the people around me.

Tourette’s will always be part of my life, but it doesn’t define me.

Return to blog