I Have Tourette's — But Not That Tourette's

I’d wager a lot of money that when you read the first three words of the title of this post, I know exactly what you were thinking: cursing loudly, violent body movements, inappropriate/awkward behavior, and maybe a hint of sympathy for me. Was I close? Well, I only made that guess because for a long time that’s what I used to think of when I thought of Tourette’s. How could I not? South Park, Deuce Bigalow, True Life, and many more movies and TV shows have all had their turn depicting Tourette syndrome (TS), some more empathetic than others, and that’s what they showed us. The extremes. So that’s all Tourette’s was to me. Then, something ironic happened.

At age 20, I was diagnosed with Tourette’s.

Would you believe me if I told you that I was actually relieved when I got that diagnosis? Here’s why — for as long as I can remember, as a kid, my body had always had a mind of its own. I was always moving, always fidgeting, always twitching. Some days it was my head. Some days it was my eyes. Some days it was my hands. Some days it was even complex, full body movements. Then, of course, there were the vocal tics. Nothing too wild, a grunt or low squeak I could usually hide, depending on how quiet the room was.

I played sports, had plenty of friends, and excelled in school. Outside of some unexplained body movements and funny noises, I was a normal kid. My parents thought so, too, as every time I would ask about my strange movements/sounds (they’re called “tics,” I would later find out), they would explain to me they were just nervous “habits” and my dad had them, too. They were nothing to worry about. “OK,” I thought. “Mom and dad know what’s best. I won’t worry about it.”

Well, while my tics weren’t much to worry about, they didn’t go away. They actually got more intense. In this strange, unpredictable pattern, some tics would stick around and grow in frequency or intensity, while others would fade away, making room for strange new tics. It wasn’t until I was in college when I finally stopped accepting “nervous habits” as the correct answer for what was going on with me. The final straw was actually pain. I had developed a tic where I would twitch my hips, lowering the left side and raising the right side, from the time I woke up to the time I went to bed. The result was hundreds of repetitive movements day after day, the structure of my hips changed, and a pinched nerve. This landed me in the doctor’s office of a neurologist at Vanderbilt in Nashville on New Year’s Eve of 2012 looking for answers to my painful situation and all the other strange things my body was doing. At that point, I had probably racked up a grand total of a dozen different tics. I’ll do my best to explain what it feels like when I tic and why it’s difficult to ignore them.

Imagine you have a mosquito bite on your arm. It itches, right? So what do you do? You scratch it. Now, let’s relate this to what a tic is like. You’ve got that mosquito bite on your arm, but this time, you can’t scratch it. So that sensation (in this case, itchiness) builds and builds and builds. The more you think about not scratching it, the worse the itch becomes until finally, you can’t stand it anymore, you have to scratch it. As soon as you scratch it, there’s a brief feeling of relief, but then the itchiness and the urge to scratch it quickly returns. This happens all day long. Now, replace the feeling of an itch with the feeling of needing to move parts of your body certain ways or make a certain noise, and that’s what having a tic is like. That “feeling” is called a premonitory urge.  Five minutes. That’s how long it took before the doctor told me I had a textbook case of Tourette syndrome. Let me explain what that actually means. According to the Centers for Disease Control and Prevention, in order to be diagnosed with Tourette’s, a person must:

• Have at least one vocal tic and two or more motor tics
• Have tics before the age of 18
• Have had tics for at least a year
• Not have the above symptoms related to having another medical condition or taking medicine/drugs

The reason the criteria is like it is is because there are varying degrees of tic disorders, with Tourette’s being the most complex. So, I finally had an answer for why I felt like such a weird kid. My brain was jacked up! (HA!). Just kidding, kind of. They still don’t know for sure the cause of Tourette’s, and it’s a complex neurological disorder. They do know genetics play a role, so when my dad told me he grew out of his nervous habits, he probably had an undiagnosed case of Tourette’s (that I’m not quite sure he has grown out of). Other factors such as environmental and chemical imbalances come into play, but nobody can say how much. Stress and fatigue will also worsen the severity and quantity of a person’s tics. Sometimes you can tell if someone with TS has had a rough day simply by paying attention to their tic severity (i.e., they’re ticcing more than normal). What you’ve most likely seen through television and movies is a tic called coprolalia, a.k.a. the swearing tic, or copropraxia, a tic which will cause the person to make obscene gestures with their body. As common as you might think it is based on how much it’s covered, only about 10% of people diagnosed with TS develop coprolalia and less than that develop copropraxia. That said, I don’t want anyone reading this to think I’m downplaying those cases of TS, either. It must be incredibly challenging coping with that side of the disorder, but the friends I know with coprolalia and/or copropraxia are some of the strongest people I know. So what is life like for someone with a mild case of Tourette’s?

Allow me to speak about my experience, now. In writing this, I had three goals:

1. Educate people about what Tourette’s is in general
2. Connect with other people living with TS
3. Teach people what living with a mild case is like

That said, please don’t read this as me trying to play the victim card or garner sympathy. I just want understanding. Tourette’s has given me a lot more than it has taken from me.

If you sat next to me in a loud or crowded room, you may not know that I have Tourette’s. As people left the room or it got quieter, you might be able to tell. Sit next to me in a movie theater, a library, or a car and you’ll know something is up. I’ve briefly explained what some of my tics were at the beginning of this writing, and for the most part, all of those tics are still with me (yay!). As I get older, I have learned how to either suppress or disguise my tics in public. You’re probably asking, “Zach, why would you do that? Also, HOW can you do that? I thought you said you can’t control Tourette’s.” Fair points. Let’s discuss.WHY would I do that? For starters, it’s often just easier to suppress a tic than to explain to someone what I’m doing, why I’m doing it, or what Tourette’s is. I also have a shade of empathy and don’t want someone else to feel bad for asking about my strange movements or sounds (They almost always feel bad for asking). However, I have grown to welcome those questions as it gives me a chance to have an educational moment about TS with them. So, whether or not I choose to suppress anything really depends on where I am, who I’m with, and the mood I’m in. I should probably get better at just releasing my tics and being myself instead of caring what other people think, but that’s a different topic for another day.

I also don’t like being stared at. This is a topic not discussed enough in the TS community. Pretty much at all times when I’m in public, around people that don’t know me, I feel like I have to be alert about my tics as to not get stared at. If I let my guard down and start making funny noises or twitching too much, the stares come. With the stares come a sense of insecurity. I hate that I even wrote that, but it’s really difficult to just avoid or block out. A “normal” person looks at you because of the noises and movements, otherwise they might not have even noticed you. So attention is on you, even when you don’t always want it. I don’t blame them either. It’s just human nature when you see or hear something out of the ordinary to be drawn to it. That doesn’t change the fact that it brings up feelings of insecurity. Those are feelings I have to fight almost daily, and I know I’m not special in that area. We’re all insecure about something. We may not be reminded of it as frequently as someone with TS, though. That’s why I’m writing this. For the people who do experience these feelings. You’re not alone. Over time, I’ve learned that those feelings should be acknowledged for what they are, and then tossed aside because they don’t serve me well. If you’re reading this and you don’t have Tourette’s, don’t take for granted the ability to literally sit still and quiet for 10 minutes. You’ve probably never thought about that until now, but it’s something I and others think about a lot. There are many people who feel invisible and wish to be seen. Having Tourette’s can make you feel the opposite: always being seen and/or heard just wishing to be invisible.

“Zach, after all that explanation with the bug bite you’re telling me you can suppress your tics!? What gives?! HOW do you suppress a tic?”

The short answer is yes, but it’s more complicated than that. When someone with Tourette’s tics, it’s a natural expression of the disorder. That’s just what it is when the mind is doing its thing, just running in the background, much like breathing. The key to suppressing a tic is mental focus. ALL of your mental focus. So in certain situations, should I want to suppress a tic for the reasons listed above, it would require me to think very hard about that particular body part, breathe deeply, and actively NOT tic. Easy enough, right? Well, no. As soon as I stop thinking about that body part and keeping it still or quiet, my mind will revert to it’s normal self and begin ticcing again, like clockwork (pun intended). As you can imagine, should someone go through an entire day suppressing tics, they would be exhausted by the end of the day, at least mentally. Not to mention, there are side effects of suppressing tics. Eventually, the tics must be released. They cannot be held back forever. Earlier, while explaining what tics were, I described a growing sensation that can only be released upon either moving that body part or making that certain noise. What will often happen is when that person gets somewhere where they are alone or with others who understand the disorder, they will experience a “tic attack,” or an explosion of all the built up tension they’ve been suppressing all day, usually through a person’s tics. This can be dangerous depending on the person, their tics, and their environment. Imagine how a volcano works. Volcanoes don’t erupt every day. They build up pressure over time and eventually the pressure becomes too much. That’s kind of what suppressing tics for a long period of time (longer than a few hours) is like.

Now that you have an idea of what Tourettes is, I want to wrap things up. I have Tourette’s but not THAT Tourette’s. I was diagnosed with a mild case at 20 years old and never met anyone else with TS until I was 23, so there was a long period of my life where I felt like there was nobody that understood what I was going through. I had seen the people on television and movies. I didn’t feel like we had the same disorder. I’m writing this for those kids (and adults). I want you to know I understand you, and I know your struggles. I also want you to know that you’re a badass. Having Tourette’s is like being a superhero but with less cool superpowers. There are so many doors this disorder actually opens up for you that you may not even realize. You’ll figure that out as you go. The creativity, kindness, and passion I’ve seen from my friends with TS is unlike any other. There will be incredibly difficult days where the tics just seem to have a grasp on you, but I wan’t you to remember how strong you really are. You’ve been given a gift, and it’s up to you to show it to the world. Just keep ticcing. 🙂