Friday, January 24, 2014

Talking Tourette's

Well, I didn't imagine I'd be writing about THIS today, but it seems like a good time to bring it up. Over on this post, a commenter joked that another blogger needs to "overcome her Tourrets [sic]" in reference to her propensity to curse when she's angry. He got called out on his ableism -- rightly -- and deleted that portion of the comment, but I thought I'd use it as a springboard to talk about Tourette's (or Tourette) Syndrome, which I will call TS from here on out, and tic disorders, because I happen to have Tourette's.

First, let's clear up the biggest misconception about TS: coprolalia, which is a sudden outburst of profanity or offensive words or phrases, while the stereotypical image of TS, only actually occurs in about 10% of people who have the disorder. Most people with Tourette's don't go around saying "shit" and "fuck" all the time, and if I could change one thing about the way people think about TS, this would be it. I don't even tell people I have TS anymore because I don't want to deal with the, "So you say fuck all the time?" comments. If it comes up, I just tell them I have a tic disorder (technically true; TS is one of several tic disorders; not everyone who tics has TS) and leave it at that.

I am pretty lucky. My TS is mild compared to some people that have it. My tics started when I was in elementary school. At least, that's when they became an issue. I remember being in second or third grade and my friends making fun of me for ticcing. I didn't know what it was at the time. All I knew is that I had a constant "itch" in my throat and nose, a constant compulsion to make these noises, to move and jerk.

My main tics, which are still with me today, are a kind of growl that I make in the back of my throat, jerking my head back, sniffing and wrinkling my nose, or twisting up my mouth and nose. I don't know why I do it. They have been with me as long as I can remember. I can sometimes control them, and they get worse when I am nervous, which is often, because I also have an anxiety disorder. Yay, me! I once heard someone describe it as trying to hold back a sneeze. That's how strong the compulsion can be and how difficult it can be to control it.

When I am alone or around people who know me and know about my tics, I don't think about it until someone mentions it. My tics just kind of happen, and unless I am paying attention, I sometimes don't even realize I am doing it.

When I am in public or around people I don't know very well, things get a little more difficult. Like I said, I am lucky in that most of my tics are quiet, aside from the throat clearing and sniffing. A few friends have told me that when they first met me, they just though I had a really annoying cold. I get a lot of people asking me if I need a tissue! However, I still feel very uncomfortable trying to keep track of my ticcing and try my hardest to control them. Sometimes, I can keep it to a minimum. At other times, I have to excuse myself. It really depends on the situation.

Some people with TS have severe tics. Some bark or yell quite loudly, and some have motor (physical) tics that can be debilitating. Some DO have coprolalia, but as I mentioned before, the majority of people with Tourette's DO NOT.

There is no cure for Tourette's, but there is treatment. Some people have to take medication; some just need behavioral therapy. I never had to take meds, and my therapy was minimal (I needed far more intensive treatment for my depression and anxiety) because my tics, while a daily thing, were not debilitating. I had a fairly normal childhood, and aside from being seen as weird and getting made fun of (usually for things other than my tics), it wasn't that big of a deal.

For the most part, my TS does not affect my day-to-day life, and I am extremely lucky for it. I don't talk about it too much, but I thought I would throw it out there as it's come up in the Pagan blogosphere recently. If you have any questions, feel free to ask!

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