Living with Tourette syndrome
Tics are something I’ve had basically my whole life. They come and go, but they are always there.
Tics are involuntary movements that my body makes due to a neurological disorder I was born with. They come in the form of twitching in some part of my body, or sudden head shakes, or speech interruptions.
My personal experience having tics is that it is really frustrating for me. Tics are like a rude person who always interrupts you at the worst possible time. But with people you can walk away, tics, they live inside your head like rats in your walls.
When I was little I had watched the Pixar movie inside out. The movie gave each emotion a character who controlled the body through some kind of Mission Control system. I pictured my tics as a monkey dancing on my control panel messing up the ability to control my tics. Why a monkey in a NASA Mission Control dancing on my switches? I don’t know I guess I had a wild imagination when I was little but it was a way to cope with feeling crazy.
Tics can definitely make you crazy! Sometimes all you want to do is have a nice conversation with a friend or family member but with tics you can’t even get one word out. Fortunately, there are other days when my tics are not so bad.
When I meet a new friend they always have questions about my tics which I am happy to answer. A common question is “why don’t you just not do it?” As much as this comment drives me nuts, it is a genuine question. My answer is tics feel like something I have to do or else I can’t move or breathe. An itch or a sneeze is something someone who doesn’t have tics could relate to.
Unfortunately tics are definitely something that attracts bullying like a magnet. As much as I could go on and on about every single time someone wasn’t exactly kind to me because of my tics I do want to say that there are some things you could do to help someone with tics rather than hurting their feelings even if that’s not your intention.
Number one, please don’t come up with names such as a “silent disorder” or “ tricks” to help us. Believe me, it’s very kind of you to want to help us but we know what we have.
Number two, if you are talking to someone with tics and they are having tics at that moment please do not keep talking. It could make us loose our train of thought or cause more tics. It is best to just let the person try to suppress their tics and get back on track.
Number three, please understand that tics are hard and frustrating for the person who has them. The best thing to do is just focus on the person, not their tics.
For more information please check out these additional videos I have added in this section of my website.