top of page

Tourette's - My experience

Our wonderful member, Ellen, has written about her exprience of living with Tourette's and the less common tics. Thanks for sharing Ellen!

Tourette's...Where to start, there's so much under the surface it's hard to know what to start with. There's the more obvious motor and vocal tics, but then there's the internal and mental tics, comorbid conditions, and assumptions. For me, an internal tic is when my stomach muscles are clenching or muscles that no one sees have locked up and won't move.

Mental tics are a whole other story. There are words, images, and phrases in my head, and they aren't my own. Snippets of songs and words I've heard will resound around my skull, sometimes it's so loud up there and the noise just doesn't stop. It can make it hard to think. Other times I get images, sometimes I see what my tics want me to do and at times I get images of the worst possible scenario. I can see the car crashing or rolling down a hill, tics where I'm grabbing knives, or running down the street, and there are plenty more. Both types are scary, I don't want to do 99.9% of the things that my tics want to do. It's got to the point where I'm not allowed to use knives and they are kept hidden away from me; my cutlery has to be strong enough that I can't bend it and my plates and bowls are frewuently plastic as my tics have so lovingly nicknamed ceramic and glass dishes as "smashables".

It feels like there is someone else living inside of me, they take control and when they do there is often little I can do. At times I can freeze mid-motion just long enough for someone to help me but too often I can't. I hate the feeling of losing control, of feeling unable to control my actions. It's like a toddler is living inside of me. I find deep pressure is a great help in reducing my motor and vocal tics. I use weighted blankets, a squeeze vest, and firm hugs or massage to reduce my tics.

Young woman in a yellow jacket sitting in a wheelchair with bright lights around the wheels

When out and about I have found it safer to use a wheelchair due to running tics and walking on the outside of my foot tics. Add in jumping, falling, and freezing tics and I'm not going anywhere fast - unless I have a running tic! I love walking but currently it's not safe for me to do so which means I have had to embrace my wheelchair in order to get out and about. To be fair, I look pretty cool with my wheel lights!

It's easy to look at all the negatives of Tourette's and feel down about the freedom it can take away. However, despite its complexities, it makes me more creative and appreciative of the things I can do. You just have to take it day by day and see where life takes you. One day I would love a tiny house, adapted to keep me safe, and a job as a writer, but I will get there one day, and one tic at a time.

Ellen Adby


Commenting has been turned off.
bottom of page