TS Champion Saphia Baktout

Posted Mon 23rd Jan 2023 at 14:49
by Saphia Baktout

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14 year old Saphia shares her holiday experience with us, and how a negative can be turned in to a positive.

Hi, my name is Saphia, I'm 14 years old and I have Tourette Syndrome, non-epileptic seizures, ADHD and a few other conditions that affect my life on a daily basis. I have decided to become a TS Champion because I think I have a great deal of knowledge on tics and tourettes, seeing as it is something I live with, and I am also very passionate about spreading awareness on the condition.

The involuntary and repetitive use of obscene language has had many negative and positive experiences for me when it comes to having Tourettes! I think that having TS can be a great and unique thing, but it can also be challenging and debilitating to live with and quite often it can bring me down. Many people believe that TS is a ‘funny’ condition or the ‘swearing’ disorder which is a BIG misconception. I've had people tell me that my tics aren't actually tics just because I wasn't swearing, (but only 10% of people with TS have coprolalia, the involuntary and repetitive use of obscene language). I am in that 10% but that DOESN'T mean that every single one of my tics is going to be an offensive tic.

One of the negative things about having TS is the way that other people react. One time I was on holiday, and I was just walking around and I ticced ‘f**k off’ and a security guard told me to watch my language so I tried to explain that I have TS and he thought that I was lying and said ‘yeah right’. I showed him my sunflower lanyard which says ‘I have Tourettes’ in big writing on one side and on the other it has a definition of what TS is and at this point I was getting quite emotional. I was with my best friend who also told him that I have TS and that I can't help it. He didn't believe her but my family wasn't far behind and when they caught up with us and saw how angry and upset I was, my step dad also explained that I have TS and I can't help it, but the security guard didn't really say anything after that.

The next day we went to reception and explained to them what had happened, and they were very sorry for and informed the head of security that if someone has a sunflower lanyard that means they have a hidden disability and to not just assume things. For the rest of my holiday the whole security team was made aware that I had TS and they were all very nice to me. A few days later, I had a seizure in the entertainment facilities and the original security guard helped me and apologised for what he did which I did appreciate.

I think this whole situation is one that has really stuck with me for a few reasons. One of them being that I was really enjoying my holiday and then after that interaction I felt like I needed to suppress my tics and honestly, I just wanted to go home and hide in my house. They did offer us compensation, which was nice of them, but I remember thinking that no compensation is going to make up for the pain of me suppressing my tics when I was meant to be somewhere to relax and enjoy myself.

But a few positives came out of this situation because now the next person with a hidden disability won’t be judged and I did get to enjoy my holiday in the end with a few added extras!

One of the positive things about having Tourettes is the TS community and how supportive it is. I've met so many amazing people that I would never have met if I didn't have the condition and that is something I'm very grateful for. Another good thing is the times where my tics are funny and make myself and everyone around me laugh (I’m ok with people laughing when my tics are funny!) But I think the best experience that has come from me having TS is going to TEENfest which is a Tourettes camp for teenagers run by Tourettes Action. I’d never met anyone else with TS in real life before and I was so nervous at first because it was a new group of people, but in the end it was the most comfortable I’ve ever felt.

I can't wait to complete all my TS Champion tasks!

I hope you have learnt something new and thanks for reading.

You can find out more about our amazing TS Champions here

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