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Tourette Syndrome

Posted by Tom Benedict on 30/11/2011

This is going to sound like it’s coming out of left field, but I can’t come up with a good segue from the stuff I normally write about. So I’ll jump right in:

I have Tourette’s Syndrome. I also have OCD, which is a common comorbid condition with TS. I’ve had motor and vocal tics since I was about four or five years old, but I wasn’t diagnosed until my late twenties. It’s not that the tics weren’t present the whole time. They were. I just didn’t know what they were and didn’t know where to go for help.

Taking over twenty years to get a diagnosis for something as obvious as motor and vocal tics may sound odd, but keep in mind when all this was going on. My first tics showed up around 1973. There was almost no public awareness of TS in the 1970s. Even in medical circles it wasn’t widely known despite almost a hundred years of medical history since Gilles de la Tourette first documented it in 1885. In the 1970s there was no Internet. There was no Youtube. There were no blogs to read or Google searches to be done. Even with all these modern resources, it’s hard to find information about something you can’t name. It was ten times harder back then.

This didn’t stop my parents from trying, however. My mother took me to a couple of doctors, none of whom had any experience with TS. One went so far as to tell her that the best course of action would be to have me committed. She took my hand and walked out of the doctor’s office. That was the last time my parents looked to the medical community for answers about my tics.

Growing up with motor and vocal tics wasn’t easy. It didn’t help that I had no clue where they were coming from. I couldn’t even tell people I had TS because I didn’t know what it was. I got teased. The really sad part, though, is that most of it came from my teachers. There were two in particular who took real pleasure in pointing out my flaws to the entire class on a daily basis. I like to think some of the kids realized just how atrocious it really was, but most of them went right along with it. They were just kids. And our teacher, the role model, was the instigator.

The point to understand about teasing like this is that it isn’t the immediate impact of the words themselves that does the most damage. The real harm is the cumulative effect. This is what makes it so hard to ignore verbal bullying. If ten people tell you you’re worthless and only one says you’re doing ok, it’s hard not to believe the ten more than the one. After years of teachers and classmates seeing only your failures, you begin to doubt there were ever any successes.

Because of all the negative feedback I received over the years and because of some subconscious memory of that doctor telling my mother to have me committed, by the time I was twenty I was terrified of letting anyone see me tic, much less discussing them openly. I figured it was just a matter of time before someone made a phone call and had me taken away. I had no doubt they would do it for the very best of intentions. But I knew that I would never see light of day again. I knew this the way that you know when you turn on the tap, water will come out of the faucet. I never discussed it, so no one ever set me straight.

One of the lowest points in my life was when I developed a really noxious sub-vocal tic where I had to breathe in a particular pattern. Unfortunately the pattern had more exhales than inhales, so when that tic was hitting hard I would inevitably run out of breath. I could be on a bus, in a classroom, or lying in bed, and I would slowly turn purple as I ran out of air. The sensible thing, of course, would have been to take a deep breath. But taking a breath broke the pattern! It meant I had to start over! Even after I was married I would lie awake in bed, slowly running out of air, terrified that my wife would wake up, see what was going on, and for my own good make that phone call. [1]

It feels awful to admit all this. It smacks of paranoia. But that’s exactly what it was! I couldn’t stop the tics. I couldn’t control them. I didn’t even have a name for them. So I assumed the worst. It wasn’t until the late 90’s that I even heard the term Tourette’s Syndrome. It was some time later that I read about it and realized what it meant.

I remember very clearly walking into my doctor’s office and saying, “I think I may have Tourette’s Syndrome.” It was the first time I’d let down my guard and let my tics show. At the end of the interview they wrote 307.23 in my chart – the ICD9 code for TS – and gave me a referral to a specialist. It was the first of many visits to many doctors. The paranoia was over. Now that I knew what to look for, I was hunting answers.

I can understand when I read or see someone who rejects their diagnosis of TS. It’s not hard to put yourself in their shoes. But for me it was an epiphany. To me those simple words, “I think you’re right: you have TS,” meant no one would take me away. No one would ever make that phone call. I wasn’t really crazy. This was just how I was. For the first time since I was four years old, I was truly free.

It would be great to say that my tics don’t bug me any more. I’d be lying, though. They do. I’m not bothered by the fact that I have them. They’re a part of me the same way being left handed is a part of me. But when they’re really going strong they’re exhausting and often painful. Since letting down my guard almost fifteen years ago, I’ve lost the ability to suppress them. These days when I tic, I tic. They’re a lot like the Energizer bunny. It doesn’t matter if I’ve pulled a muscle or have a cramp. They just keep going. And going. And going.

The tics were never the real issue, though. It was other people’s reactions. If I could change one thing, it wouldn’t be to get rid of my tics. It would be to change how other people see them. As it turns out, I’m not the only one with a desire to change the public perception of TS. I recently started looking for videos by people with TS about TS, and found some real gems. Unfortunately there’s also a lot of stereotyping out there as well. For someone who doesn’t know any better, it can be hard to tell them apart. So in an effort to set the record straight, these are some of the Youtube channels that really caught my eye:

  • Lena has TS. She also has a really lighthearted and honest delivery in her videos that make them a joy to watch. She covers the ups and the downs, coping in public, telling people about TS, and much much more.
  • Megan has TS and OCD (the same as me!) She has a number of videos about TS and OCD in which she discusses a lot of the day to day issues with TS and how she deals with them. Thanks, Megan!
  • Emma has a really great attitude about TS. When you go through her stream, keep an eye out for her Tic Project. It hit a little close to home for me.

I only listed three channels, but there are a lot of other good videos out there. I could get all maudlin and say how much I wish I had videos like these when I first started to tic. But the past is the past, the sky is blue, and there’s a fair wind blowing. Have fun watching the videos. Tic a little, laugh a lot, and for crying out loud get out and fly a kite.

– Tom

[1] My wife has assured me this was a really goofy assumption to make. She really is the best!

P.S. Thanks to Lena, Megan, and Emma for giving me permission to link to their channels. Keep making videos!

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