As someone with Tourette syndrome, I have often faced ridicule due to my tics — from the common glares to the direct insults, even being followed by a police officer. These are very common occurrences for me, and for everyone affected by tics and Tourette syndrome. As I have said before, “Tourette syndrome is the only disability you can mock and still get away with it,” as that is true.
The state of awareness as it applies to tics, in general, is very poor compared to other disability communities to the point that we are often labeled as “attention-seeking” and “druggies,” despite simply having a neurological disorder; one that often causes more pain to us than you could imagine.
But I know a lot of this treatment that I receive is due to widespread ignorance and misinformation about the condition, in which case I would like to tell you three things I want you to know about my Tourette syndrome.
1. I can’t control it.
One of the things I have often been accused of in the past (even by my own relatives) is that I can actually control my tics, but I choose not to in hopes that I will receive attention from them, or be labeled “more disabled” than I am. But that accusation is completely untrue. I don’t care for attention (my autism and anxiety kind of reinforces that), instead I rather avoid attention as much as I can. I can rarely avoid it though, because of how vocal my tics are and how serious they can be. The truth is I would like my tics to be gone completely, as I suffer from them a lot. So the accusation that I can control them only makes it worse for me. I can’t control them, and even if I manage to control one tic for a period of time, it’ll just be replaced by another one.
2. It’s painful.
Some people might think that tics are simply movements or sounds without anything else to them than that, but that’s untrue. When someone mocks my tics they don’t realize how much pain I actually am in. The tic itself causes immense pain before I manage to perform them. Why do you think I have to tic? In order to relieve that pain, but that’s only one reason they are painful to me. A lot of my tics are self-injurious, even the ones that are simple movements like eye-blinking. Tics often leave me scared and in physical pain, but people continue to mock them even when they see me crying and in pain. Why? Do you think I enjoy being unable to control my own body? Do you think I like being stuck in loops most of my days? I don’t like my tics, I never did, so please stop acting as if I do.
3. You don’t understand.
There have been many times in the past when someone told me that they “understand” what I am going through based on once having a normal childhood tic. They’ve used their experience as a basis to claim that I can “control it,” and say that it will go away. But they don’t understand. While natural childhood tics can be uncontrollable, they are not the same as having dozens of unique tics that you deal with 24/7 for your entire life. Childhood tics are not something that interferes in your life. So please stop telling me you understand, when you don’t. Instead try listening to me and listening to other people with Tourette syndrome that need your support and help.
I know there are many people that do not have Tourette syndrome and do not understand what I am going through. And I understand that many people do not mock tics or individuals with Tourette syndrome, I thank those people for their kindness and understanding, especially in a world full of ignorance and unhearing ears.
With this post, I am hopefully I can at least spread a little bit of awareness, even if it’s simply about my tics.