Would you like to share your TS story? If so, please send a private message to my Facebook page or send me an e-mail at firstname.lastname@example.org. Please answer these questions (by either typing them out or videotaping) and send a picture or two to go with it! Then I will post your story on this page!
Success Story #1!! Katy’s Life with Tourette’s Syndrome
A: My name is Katy, I’m 17 years old (almost 18!) and I live in Wales in the UK.
Q: How long have you had Tourette Syndrome?
A:I was diagnosed with Tourettes 9 months ago after I suddenly started developing a throat clearing tic.
Q: What kinds of tics do you have?
A: My tics quickly developed to head jerking, clapping, tapping, coprolalia, copropraxia, echolalia, punching my chest, clicking my knuckles and facial grimaces. But I like to think of my signature tic as my squeak (my friends often call me guinea pig now because I squeak so much!)
Q: Do you have any associated conditions?
A: I also have anxiety, panic disorder, OCD and some issues with sensory processing.
Q: What is life like for you living with Tourette Syndrome?
A: Life has been pretty up and down with tourettes especially because I developed it so suddenly and at such a strange time in my life! I’d already become used to life as a teen without tics but then suddenly developing tourettes really turned my life upside down. People around me, like my friends and teachers had to be informed about everything and there have been times that I’ve felt like a burden because everyone has had to adjust to my tics. I felt like I wanted to record with journey and show people what it’s like to live with tourettes, so that’s when I started my YouTube channel ‘LetsTalkTics’. My channel has been such a help to me because I can talk about tourettes openly and it has helped me to come to terms with the fact that I might be living with tourettes for the rest of my life.
Q: What advice can you give others who are newly diagnosed with Tourette Syndrome?
A: The largest piece of advice that I can give to those who are newly diagnosed with tourettes is that being open about your tourettes is much easier than being closed about it and you’ll end up gaining the best support if you talk to people about what you are going through.
Q: What is the hardest thing about living with Tourette Syndrome?
A: The hardest thing about living with tourettes for me is the swearing tics. I hate saying these horrible words in front of my friends and family and coming to terms with this has been really difficult and I’m still not very comfortable releasing my swearing tics in public.
Q: What do you think other people should know about Tourette Syndrome?
A: I think people need to know that tourettes is not just about tics. It runs so much deeper than that because tourettes can cause physical and emotional pain, tiredness and almost always comes with co-morbid conditions so it’s not always just about the funny movements and sounds.
Q: What are your strengths and what do you like to do?
A: Despite having vocal tics, I absolutely love to compete in public speaking competitions. I always feel so confident and standing on the stage reminds me of my life before tourettes. But it also shows me that tourettes has not limited me in any way.
Q: .What are your goals in life?
A: I’m about to start my last year in school before moving off to university, hopefully to study psychology. I’d love to work in a rehabilitation centre or an inpatient care facility.