‘You don’t look like you have Tourettes?’

It might surprise you to know that I consider my disability to be hidden. Not all the time, but occasionally my tics are almost invisible. Internal tics, tics that I can morph into much more ‘normal’ movements and gestures, and tics that I only execute in the privacy of my own home. My Tourettes can be very situational and only a handful of people I trust have witnessed my tics at large.

Tourette Syndrome is like no other disability out there. It seems to be the only disability you are ‘allowed’ to mock and the most misunderstood condition out there. Because of this we hide.

I spend a lot of time talking and educating people about my disability, but I still physically hide it. Or I spend hours of the day suppressing it so that I can get on with my day to day activities and fit into the social norms. Whether that means on a bad day I stay in and work from home, or I channel my energy into disguising or suppressing tics, which I cannot do all of the time.

I think about this a lot. I think about why I feel the need to hide, even my specialist GP said that I disguise my copropraxia tics very well by talking with my hands. I think this is down to wanting to be perceived in positive way. I don’t want to be seen as someone who needs sympathy, seems negative about life or someone you feel sorry for. A hard worker, a bubbly personality, and someone who puts them self out there seems to be what people are drawn to. I can’t do this all of the time, I hibernate, I make excuses and I hide.

So I want to pull this a part a little, I want to find out what it is like for other people who have a disability, that is either hidden through choice or hidden because there are no outward physical signs for people to see.

Over the next few months I will speak to friends and find out what it is like to live with this experience, maybe there are parallels? And maybe these wonderful people have some tips for me too!

Look out for a series of blog posts called ‘Hidden Voices’.