Guest blogger: Sophia and her TS

Sophia talks to Tourettes Action about her experiences of living with TS and what it means to her.

For me, Tourette’s made its appearance a little later than usual. I was 16 and had just been diagnosed with autism spectrum disorder, OCD and depression. Antidepressants were prescribed to help me manage my anxiety.

One morning, I woke up and was no longer in control of my body movements, my arms and legs were doing exactly what they wanted to, as if they were not a part of my body. I kept making noises, barking and meowing. I couldn’t stop. The inside of my body felt as if there were ants running inside me, combined with a strong burning sensation, a building tension that reduced ever so briefly, but only after a ‘tic’.

From that day, my tics became more complex and at one stage the movements were constant. I shouted things out and repeated other people’s words, phrases and actions. A constant feeling of unease, not knowing what was going to come out of my mouth until it had been said. Not only did I have to adjust to my new situation, I also had to accept the stares of onlookers, many of whom had only ever seen Tourette’s in the media.

Unfortunately, the media often has a tendency of over focusing on the ‘swearing tic’, known as coprolalia, which only affects a small number of those who have Tourette’s. “I wish I had Tourette’s so I could just swear all the time” is a phrase that I’ve heard more times than I would have liked to. Coprolalia is involuntary and certainly not something Tourette’s sufferers enjoy having, nor do they use it as an excuse to swear.

Tourette’s is more than just tics, many of us have multiple co-occurring conditions that have their own symptoms. Although Tourette’s is manifested outwardly, sometimes it is the symptoms people can’t see that cause us the most problems.

Two years passed, along with lots of hospital visits. Tourette Syndrome was mentioned throughout, but my official diagnosis was given to me at the age of 18. Now, I am studying Psychology at University. My tics change in frequency and severity, new tics emerge and old ones return. I have slowly learnt to accept my conditions and I am fortunate in that I am surrounded by wonderful people, who are incredibly supportive.

I think it is important to educate and challenge the stereotypes. To become your own advocate and to embrace what Tourette’s has taught you. To those reading this who have Tourette’s themselves:

“Keep Calm and Tic On!”

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