A big thank you to those who stuck around and helped the first entry after a long break become a big success. It feels nice to be back consistently advocating for awareness, and to see that the passion of the community is as high as ever!
This entry is going to focus on the things that as someone with TS, I wish others who didn’t have it had to experience at least once in their life as someone with the disorder. Hopefully this wont come off as vindictive as it had originally sounded, but the feelings are real, and I promised when I started this blog to be as transparent emotionally about Tourette’s as I could.
As the title states, I wouldn’t wish Tourette’s on my worst enemy. I wouldn’t wish for someone to have to deal with the lack of control and all the things that go with it every day, through every stage of life.
There are a few things I do wish they could experience for a day that I feel aren’t just unique to TS, but many illnesses and disorders.
The overwhelming anxiety that this is controlling my life – It’s well documented that Tourette’s is chronic and there is no cure. With that said, TS is a 24/7 attachment to whatever it is I am doing. I think about how it effects my work, my personal relationships, my sleep, my overall health…and sometimes, it feels like the inability to not think of how it affects every part of my life makes it feel like it is controlling my life. If others knew how daunting this is, they might be more understanding of how to combat these thoughts and how just the littlest thing can have a big impact.
How it effects even the things you’d never expect as a bystander – As someone without TS, you may be able to draw the conclusion that it effects your ability to interact with others in work/school and social situations. But what if I told you TS even effects my ability/confidence to drive long distances? It also effects my ability to keep my car windows down on a nice spring day because the second I get to a red light and I feel a tic coming, I roll them up to protect myself. These are just few of many personal examples, and I think anyone reading this with TS is already creating their own list and nodding their head. Tic’s are more than what you see on the outside, and if more people understood the parallel reactions we have even doing the smallest of tasks, we might not feel the need to make up excuses and instead be honest.
What it’s like to be stared at and not be able to stop what drew their attention – Imagine you are at the grocery store when you suddenly realize you have toilet paper trailing from your shoe. You draw a few stares then look down to find the culprit and immediately disconnect the paper. When you look up, no one is staring anymore. You have eliminated anyone’s reason to and can go about your shopping trip. Now imagine that toilet paper is permanently stuck. You have to walk around the store as the guy or girl with TP hanging from your shoe. No matter what you do, you can’t lose it. This is a silly but valid representation of what it is like to draw stares for ticing in public. No matter what you do, you can’t stop doing the thing that is drawing the attention. If others knew how demoralizing it is to not only have to fight the embarrassment of being gawked at, but the way it causes a self-depreciating tone of voice inside us because we just wish we could be normal, they might think twice before looking our way.
I could probably go on and on, but I think after this, most of the items link back into the 3 I listed. The point of awareness is not just for people to understand what TS is, and to raise funds for the fight against it. Raising awareness to me is just as much about making it some people like me didn’t have to wish that others could feel the things above just so that we don’t feel alone.
Let’s be considerate, and above all, let’s be kind to each other.