Tourette's will never have me!

Posted Mon 13th Feb 2023 at 09:00
by Maisie Speight

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TS Champion Maisie shares her story

When I first started to tic at the age of 13-14 it was a bit of a shock to me and I was really scared, to the point that I didn’t tell anyone for about 7 months!  I would suppress all day and let my tics out at night which led to bad tic attacks that really debilitated me, and I found it hard to walk the next day. I finally told my SENCO teacher about what had been happening then she told my mum. We had a chat and decided to talk to the doctor. By the time of my appointment in May 2021 I had been experiencing tics for over 1 year and ticcing freely at home but not outside of my home.

When I arrived at the pediatrician appointment, they called my name, and we discussed what had been happening and showed her some videos of me ticking. They did some testing to see if there was anything else wrong that could have caused the tics and she then diagnosed me with Tourette's and sent me on my way without any help or any advice on where to go for outside help.

We then discovered Tourettes Action who have helped me so much! I have been lucky enough to attend 2 TEENfest events which have allowed me to make connections with other people with TS and I met the most wonderful people who work for Tourettes Action. They make you laugh and feel so normal in a world where we are always judged for doing uncontrollable things and just trying to get through the day.

I have had a lot of positive experiences because of my TS including meeting others who have the same difficulties as me and finding new ways to help get a better grasp on how to deal with it. I have a lot more confidence now and I have become a TS Champion which I would of never have done if I didn’t have the confidence.

When I was in high school there were mixed signals about how the teachers dealt with my TS. Some didn’t really care because they were not very educated about TS, and other teachers tried to understand but still did not really grasp some of the access needs that were put in place to help me get through the day without going home. When I told my friends most did not believe me, so I found new friends who are so lovely, brilliant, and so understanding.

I have now started college studying animals and I have been there for over two months. My friends where talking about my Tourette's and they said there was no need to suppress because they had someone who had Tourette's there before and they were “ desensitized ” from the tics. This was a huge relief for me so I decided to stop suppressing, this was one of the best decisions of my life because it felt so nice to be accepted for who I am.

You can find out more about our TS Champions here

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