Grace Robinson-Martin, aged 22

I first noticed my tics in primary school when I was in year 2, which would have made me about 6 years old. It started with me choking on my food at lunchtime, as my neck was jerking backwards out of nowhere every so often. My teachers at this time informed my mum, and my mum noticed that things started to get worse when my eyes started twitching and I began blinking frequently with my eyes. This eventually progressed to twitches in my shoulders and other various areas in my body.

Shortly after this time, I was referred to a neurologist at Sheffield Children’s Hospital, and this was the time I was diagnosed with ‘Tourette’s Syndrome’. At this point, it all made sense to my parents and me in terms of what was going on and why.

School was quite a difficult time for me, as I experienced a large amount of bullying during this time, which didn’t help matters in terms of my tics. We found that anxiety always made matters worse, but what I got quite good at doing during my school years was suppressing my tics as much as I could until I got home at the end of a school day, and this would be when my tics would become even more noticeable, as I felt like at home I had a place to release everything.

A lot of people at school didn’t understand why I did the things I did when I ticced, which resulted in a lot of questions, and I would get stared at a lot. I think this was a big part of what contributed to me suppressing these behaviours during this time.

In my personal opinion, I would say my toughest challenge has been trying to fight the stigma and educate people around the condition itself. People seem to have the stereotype when you tell them that you have Tourette’s Syndrome that ‘well, you don’t shout and swear’, which was quite frustrating trying to explain to people my personal experience with Tourette’s.

My proudest achievement has been my educational journey, from getting through secondary school and my exams, through to going on to college and getting my diploma in Performing Arts. I feel like this allowed me to fight the stigma in my own way, showcasing that we shouldn’t let a thing like tics and Tourette’s hold us back from doing the things we enjoy.

If I could advise my younger self, I would say don’t let other people’s opinions change the way you think of yourself. Don’t let anything or anybody stop you from doing what you want to do in life, because if you have a dream, it takes hard work and determination to reach for that dream.

Personally, my experiences with TIC have been nothing but positive. I have received support and advice in the past from this amazing organisation, and I have attended group events with family members of mine at times, and have found these environments to be very positive and supportive.

Thank you so much for taking the time to read my story and my experiences with Tourette’s during this awareness month. I hope that my story, as well as the stories of many others, can help to spread awareness and shed light to the condition, and eventually work towards breaking the stigma.