I am from Derby in the UK and got diagnosed with Tourette Syndrome just over a year ago. I am now 19 and have been looking for ways to express myself and try to come to terms with TS and how it affects me. Since I found this blog and read a load of the entries, I have been inspired by it and would like to contribute my own experiences.
I still feel like a newbie to TS. I didn’t start to have tics until shortly after my 17th birthday and get a diagnosis until after my 18th birthday, so it’s been just over three years – but it doesn’t seem it!
Since my tics started, I have been taken on an eye-opening journey of different neurological conditions and how little the general public seem to know about them. Initially, I had decided to isolate myself from any information on tic disorders for the fear of mis-self-diagnosis.
I was aware of TS, as I had always had an active interest in different conditions, but although I knew I had similar symptoms to those with TS, I refused to believe I could just spontaneously wake up with it one day after just starting my A-Levels.
Obviously, being told I had TS was a shock. I was convinced I had a habit tic and was just having trouble breaking the habit! Obviously, as different tics developed randomly, this seemed less and less likely to be a habit tic, but I suppose I could still hope that it was just a habit and like I’d stopped biting my nails (briefly…I’ve recently started again!) I’d stop these pesky tics.
I am finding new facts every day about TS through informative websites and other people’s personal experiences, but it has felt like a complete maze to try and find some clear cut facts about the condition. Luckily, my school was fairly OK with me to get on with what I wanted to do and I sat at the back of my classes where possible to try and avoid being a major distraction to the other students (and also so I didn’t feel too self-conscious). I also got my own small rooms for exams.
I do feel blessed about how I continued to feel accepted at school by the majority of people, and it was never made into a major issue. It saddens me greatly that some people suffer in addition to having the condition by people not accepting them or making an issue out of it.
I do wonder, however, whether any additional support would have been offered if I were younger or if my tics had been slightly more severe. There were occasions where I was unable to work in lessons because I couldn’t focus but this was fairly rare. It was never even mentioned to me, but this may have been because I was old enough to take matters into my own hands, and I could have just asked for help if I really needed it.
TS was never really explained to me. I was told that my tics were like any excess energy exploding out of me and that was it. I have been so grateful of blogs such as these so I could see how other people with TS felt and how things that were confusing me and seemed absurd were experienced by other people.
I also hope that one day I will be able to actively help other people with TS and other neurological disorders. And maybe writing a blog like this is the first step (as well as helping me develop some better writing skills!).