Charley Matthews talks about her empowering experience at TeenFest, and why her tics volunteered her to do the washing up!

Posted Wed 29th Aug 2018 at 10:27
by Charley Matthews

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Tourette Syndrome for me has been a scary, embarrassing and lonely experience.

I had constant worry and anxiety from going out in public, in fear of people staring and judging. I started showing signs of TS in June 2016, when I was 15 years old. It began with head movements and from there it has escalated. It has been a massive struggle and learning curve for me and my family. Because of my age, it was very difficult for me to get any medical help. I was too old to be a child, but too young to be an adult! Because of this, me and my family have received very little advice on how to manage my tics, pain or confidence.

This year, my parents signed me up for Teen Fest. I didn’t want to go at first, but they insisted I would have a good time. I was extremely nervous when I arrived as I am a shy person anyway and find it difficult to socialise in big groups of people. However, on the first evening together, we all sat around and spoke to each other. We covered the general ‘what’s your name?’,‘where are you from?’ and ‘how long have you had TS?’ We also discussed our own experiences with Tourettes. Strangely enough, my tics helped fuel a conversation because I immediately had something in common with everyone. You never need to think of a conversation starter when your vocal tics do it all for you!

On Saturday, we attended archery in the morning which was really fun and something I hadn’t done before. The second activity was indoor rock climbing and for that, we had a 40-minute bus journey to look forward to! Everyone’s tics were bouncing off each other anyway but I was not prepared for how loud and crazy things would become. We managed to get to the end of the road when I shouted out “the driver’s called Jeffery!” From that point on, the bus driver, who was in fact called Mike, was subjected to a variety of Jeffery tics. Once we arrived, we all had lunch together and then we put on our safety equipment. We had full access to the climbing walls, which meant I could stick to the easy ones until I was comfortable with moving on. After that, we returned to the bus – and Jeffery! – and headed back to the site. When we got back, Jeffery came in for a cup of tea and cookies as he’d loved our company. Everyone was very tired, so we lounged about for the rest of the evening. That night, we had pizza for dinner which was very yummy, and hot chocolate before bed. My tics volunteered me for washing the dishes after eating!

I woke up fairly late on Sunday morning due to the action-packed day we had on Saturday. Once washed and dressed, we all helped out with preparing the table for breakfast. It was very interesting seeing my parents when they came for breakfast, as I had picked up a lot of different tics over the weekend. Everyone and their families all sat down for breakfast and a chat. The last event of the weekend was the awards where each teen got a reward for different things such as best accent and best climber.

My experience of TeenFest has been exciting, empowering and knowledgeable all at once. I took part in various activities, such as archery and rock climbing, which boosted my confidence and helped me make friends. Just by talking to each other, I have learnt how to manage my tics a bit better, which is something only a person with TS can really give advice on. For example, I have a tic where I bite my hands and arms. My new friend had also experienced a similar tic and she suggested trying to bite an object instead. This small piece of advice has already helped me tremendously. Through this experience, I have realised how normal my tics are and that they do not define me as a person. I no longer feel like I have to suppress my tics as it’s just a part of who I am, and I should not be ashamed. I hope there will be more events in the future where young people, like myself, can learn that they are not alone!

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