I Have Tourette Syndrome (Guest Post)

June 10, 2014 | 106 Comments

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In honour of Tourette Syndrome Awareness Month, my beautiful friend Annelie chose Truthfully to share her experience of being diagnosed with Tourette’s almost a year ago at age 38. Celebrate her courage and vulnerability with me. I love you and I’m crazy proud of you, my sweet friend.

I’m chatting with a small group of people at a party. Time passes and I start to say “Mom!”, “Poppers!”, or “Squirrels!” every few seconds. Luckily my voice isn’t loud and doesn’t seem to interrupt the speaker. But I can sense the person next to me can hear it. He keeps turning to look, expectant and then confused when I don’t explain my interjections. After the third time, I quietly tell him, “I have Tourette’s.”

He looks surprised. “What? I don’t get it. What’s the joke? I missed it.” And I reply, “No, I’ve been diagnosed with Tourette Syndrome. That’s why you keep hearing me say random words.” I can’t tell if he has absorbed this information, and he replies confidently, “Well ok. But I didn’t hear anything at all. No worries.”

He probably means to reassure me and fails to recognize anything that fits his preconception of Tourette’s. He might think I’m telling him I like to curse. He might think I started to speak and changed my mind. He likely didn’t notice my facial grimaces and frequent head turning. Maybe it looked like I was expressing disagreement and flipping the hair out of my face. Meanwhile, in the back of his mind, he might be trying to figure out why I call people “Mom.”

Context Clues

I don’t blame him for this misunderstanding. Humans are good at making sense of our environment. We use context to fill in words we don’t hear. We read body language to understand most of a person’s intended meaning. We connect the dots and fill in the blanks. But this doesn’t work well with Tourette Syndrome (TS).

I’ve had people think I’m being rude, immature, interrupting, making in-jokes, indicating that I need to go to the bathroom, in pain, or uninterested in talking to them. All of these conclusions are reasonable, but they’re incorrect in my case. I make sounds, repeat words, and form movements involuntarily. These are called tics and they’re meaningless.

It’s difficult to explain. I realize it looks voluntary and our instinct is to assign meaning. Especially when I’m talking without using an angry muppet voice or shouting urgently. This CAN be a part of a person’s tics, but mine are most often spoken in a normal tone and volume. Sometimes they’re kind of sing-songy. Many well-intentioned people have told me things like:

“I can’t hear it, don’t worry.”

“Everyone has little phrases they like to say.”

“It just blends in.”

“It’s like you don’t have it.”

These kinds of comments frustrate me. Here’s how I’d like to respond:

“I can’t hear it, don’t worry.”  — Then why do you keep looking at me every time I do it?

“Everyone has little phrases they like to say.” — I suppose, but it must be nice to be able to choose what and when you say your little phrase without a big knot of anxiety in your stomach. Not everyone has TS.

“It just blends in. I’d just roll it into the conversation” — OK. But that’s a lot of work and isn’t always possible.

“It’s like you don’t have it.” — This one gets to me. It’s EXACTLY like I have TS, actually. Because I do have it and this is what TS looks like. Maybe the person’s noting that I’m not ticcing at the moment. And I do often try to hold them in. It’s called “suppressing your tics.”

Suppression

Suppressing tics has been compared to sneezing. You can hold in a sneeze, but it eventually comes out. I like to compare it to vomiting. You try to keep it down, but you feel it rising in your throat. You’re anxious about the inevitable. And the longer you prolong it, the more the nausea and anxiety builds. You feel relieved when it comes out, but it’s not socially acceptable to do this in front of others. For me this is a more accurate (although gross) analogy.

A More Effective Way To Explain

Back to the party. I try a different tactic with the next group of people. I draw on my past teaching experience, using a guided discovery model to educate my new acquaintance. When someone turns their head towards me in response to a tic, I ask, “What did you just hear?”

“I don’t know. You started to say something but I didn’t hear it.”

“Did you hear a word or sound?”

“Um, something about your mother?”

“What word did you hear?”

“Mom?”

“Yes, mom. I said mom. You heard me say mom. I didn’t mean to say it; it was completely involuntary. It’s called a tic. I say mom about 100 times a day, and it doesn’t mean anything. I don’t actually want to say anything about mothers and I’m not calling you mom. I have a neurological disorder called Tourette Syndrome.”

“Oh! I see! I always thought (fill in the blank) about Tourette’s!”

Yay! Breakthrough! I helped someone recognize something I’ve said as a tic, that they DID hear it, and that Tourette Syndrome might not always show up like the stereotypes we see in movies. I’ll probably have to point out more tics as they happen, but at least now we’ve established a framework. Too bad I don’t always have time to use this explanatory method with everyone.

Tourette Syndrome Awareness

The more those around me know, the more comfortable I feel in social settings. I’m writing this post in honour of Tourette Syndrome Awareness Month (May 15 – June 15) and I’ve decided to come out on social media. I can educate my extended community and help out others who have Tourette Syndrome, just as I’ve benefitted from reading blogs and articles by those with TS.

Most people don’t know much about Tourette Syndrome. People have told me they’ve never heard of it or thought it was a fake disorder used for jokes in movies. Some know it as “the cursing disease.” Some have seen documentaries, but those documentaries focus on more severe cases and as a whole they present a narrow and incomplete picture of TS.

My Diagnosis

I was diagnosed last year in August of 2013, unusually late in life at age 38. It’s hard to explain to people who knew me previously why I’m suddenly shouting “Squirrel People… Unite!” when they know me to be pretty quiet.

Most, but not all, cases of TS are diagnosed in childhood. It’s thought to be genetic, but scientists are still working on finding the exact cause. That’s why it’s called a “syndrome” instead of a “disease.” There is no cure; there are only recommended treatments that can help in some cases.

I was diagnosed by a neurologist who interviewed me for about 45 minutes, had me perform a few tests, observed me, and ruled out other diseases with blood tests and an MRI. Facing the possibility of Huntington’s or Wilson’s disease, it was good news to find out I merely had Tourette Syndrome. However, some people have very severe cases of TS and it is not “merely TS” for them. It can be very painful and debilitating.

Early Symptoms

I’ve had tics for a very long time but they were so mild that I came up with my own explanations. I assumed they were a part of my Restless Leg Syndrome (RLS). I assumed I was tired, stressed, or talking in my sleep (even though I wasn’t always asleep yet). I thought everyone did those things!

For years I made small, repetitive, humming sound at night, along with a diaphragm contractions. My arms and legs would jerk — hey, maybe I had RLS in my arms too! Or maybe they were just hypnic jerks, also called sleep jerks (even though I wasn’t in bed yet). Sometimes my vocal sounds would turn into other syllables or short words, but not often enough that I thought much of it.

One day when I was about 12 years old, I sat reading at the kitchen table while my parents drank coffee and cleared dishes. All of the sudden I let out a loud, firm, SHUT UP!!

Everyone froze. In my family one does not tell parents to shut up. No one had even been talking to me or making much noise! I hadn’t been feeling impatient or angry at all. I apologized profusely and explained that I had no idea why I said it. I went to my room completely bewildered. But it didn’t happen again and I eventually forgot about it.

There were other isolated incidents along with other small tics I thought were normal. But nothing ever added up or prompted me to see a doctor.

A Sudden Increase In Symptoms

Last year I became ill with something unrelated to TS and was hospitalized four times. During this period my humming began to happen during the day while I was in class. I figured the physical stress was causing the humming sound to increase in frequency. And I was mortified! People assured me they could hardly hear it, but I was squeaking like a mouse in public — how do you reassure someone about that, even if the squeaks ARE quiet?

I developed panic attacks because I didn’t know what was happening. I thought I had a brain tumor. I never suspected Tourette Syndrome because I only knew the pop culture version. My doctor referred me to a neurologist. Meanwhile, the humming began to take the shape of syllables and words.

In August, when I was finally diagnosed with Tourette Syndrome I was relieved to find out I wasn’t dying, but my world was rocked. A relative said, “It’s like you were walking down the street, minding your own business, and a piano fell on your head.” Yes!

The neurologist explained that I was born with TS, but it had been so mild that it didn’t interfere with my life until I became sick. Whatever was in place keeping the TS in check dissolved and made way for my symptoms to flourish. The switch had been flipped.

And now, I find myself randomly announcing, “Your Mom’s here to pick you up!” Welcome to the new me!

Here are some snazzy lists to help you learn more about Tourette Syndrome and how it shows up in my life.

Four Things About “The Cursing Disorder”

1. Coprolalia

Tourette Syndrome is known as “the cursing disorder,” but only about 10% of those with TS have cursing tics. This is called coprolalia and it includes saying anything inappropriate or obscene. I do fall into this 10%, but only some of my tics fall into this category. A lot of other silly things I say would also be categorized as coprolalia. So even though I have coprolalia, I don’t curse a lot. Sometimes I simply say a sharp NO! in the middle of someone’s sentence. It sounds rude, but it’s just another tic, and technically considered coprolalia. I try to suppress these the most. When they do come out, I tend to laugh, because… well… it’s funny!

2. Wishing You Could Curse Any Time

You can! Sometimes people say they’d like to have Tourette’s because then they could swear whenever they want to and get away with it. But the truth is that if you DON’T have TS, you already get to curse whenever you want to, because you have control over what you say. True, you might not get away with it, but people with coprolalia are not really getting away with it, either. It causes great anxiety and misunderstanding, and people with coprolalia frequently get into trouble for something they can’t help. I’m so lucky that I didn’t have coprolalia while in school. With coprolalia you curse when you’re not even angry. It’s called noncontextual cursing and is entirely without meaning.

3. Sorry, I came down with a case of ‘turrets.’

This gets tweeted a lot. People use the word “Tourette’s” to mean they’re angrily cursing. I’m not offended by this, but it does perpetuate a stereotypical misunderstanding of Tourette Syndrome. The stereotype does help others to recognize my tics when I curse, but occludes recognition of other types of tics. People’s tics can include grunting, squeaking, throat clearing, stuttering, spitting, blinking, freezing, biting, licking, barking, beeping, winking, touching, and even hitting or scratching oneself. Maybe if you punched yourself in the face while watching sports you could say, “Sorry, I came down with Tourette’s” to help spread awareness. Just a suggestion.

4. Comorbid Conditions

The only time I hear a tic in my head before I say it is when I think, “Oh no, what if I say THIS right now? Would I get beat up?” And then it flies out of my mouth. It’s not that I’m thinking that bad thing; it’s just the thought, “What if I said THIS!?” that compels it to burst from my mouth. This is how Anxiety and Obsessive Compulsive Disorder can work together with TS to create this scenario. Anxiety, OCD, ADHD, and Depression are all common comorbid conditions along with Tourette Syndrome. It doesn’t mean you develop these conditions together; it just means people who have TS frequently have one or more of the other conditions.

Seven Things About Tics

1. Tics wax and wane.

I don’t tic 24/7. I can have good and bad months, weeks, days, and hours. I tend to tic more in social situations or when I’m nervous, and less when I’m speaking with one person in a calm environment. I don’t tic when I’m angry. I tic less in the morning. I could list many general rules, but the tics can and will break them.

2.  Tics change over time.

When I first started to tic words, I said pika (like the Pokemon character) over and over for a couple of months. Eventually I started saying mom, which has been my main tic ever since, with squirrels and poppers as close contenders. I hardly ever tic pika now. If I haven’t seen you in a while, you might need an update on my latest tics, otherwise you might be very offended when I keep saying shut up in the middle of your sentences. Anything I hear or see can be “picked up” as a tic, and I never know what will get chosen.

3. Echolalia and palilalia are two other kinds of tics I have.

Echolalia means I repeat words I hear other people say, and palilalia means I repeat my own words. Echolalia often sounds like I’m obnoxiously mimicking someone. It happens, for example, when I watch TV, or when I overhear a conversation in a restaurant. Sometimes if I hear a “beep” sound like a car or phone, I say the word beep! For a while I would hear a dog bark and respond with ruff!

4. You aren’t guaranteed a show.

If I’m out in public, I automatically start suppressing. I suppress as much as I can even though it doesn’t feel very good. I’m not completely sure how I do it, but I become vigilant. This doesn’t mean I can always stop the tics. My ability to suppress changes from moment to moment, and the urge to tic changes, too.

5. Both ticcing and suppressing can be exhausting.

Sometimes I’ve gone out with a friend and maybe it appeared to be an easy tic-free time, but in reality I was expending a great deal of energy holding them in. I might be completely exhausted afterwards even though it was a nice visit. On the flip side, if I’ve been ticcing a lot, I start to lose my voice and my neck gets sore.

6. Every person with TS is different.

If you know someone with Tourette Syndrome and you meet a new person who is telling you they have Tourette Syndrome, don’t assume they are faking it because they aren’t acting like the other person you know. There is such a huge variety from person to person. There’s also a huge range in severity.

7. Don’t attach extraneous meaning to tics.

Some tics are very annoying and some appear to be cute or funny. The annoying tics are not done deliberately to annoy (even if I laugh). The cute ones are not done deliberately for attention (even if I laugh). Tics are involuntary and unpredictable. Once a tic has happened, laughing is my most positive response, not evidence of deliberation. Also, you can’t just conclude “oh she’s nervous” when I tic. Tics are triggered for complex reasons. I can tic a lot when I’m feeling a happy or excited kind of nervousness, but it can happen out of the blue for no reason at all.

Please DO’s and Please DONT’s

1. Acknowledgement is better than totally ignoring it.

I like it when people laugh at the vocal tics after we’re all in the know. I like them to be acknowledged in some way, especially when we are first getting to know each other. Even if you say, “oh, there is a tic” or “yes, squirrels indeed.” That way I know that you are hearing and accepting them. Some people are very polite and excellent at ignoring. This might seem like good manners, but it’s strange to be singing (yes, singing) “Shitballs! In your mouth!” with zero reaction from the person right in front of me. Along the same lines, please don’t say you CAN’T hear me if you CAN hear me. Your intention might be to reassure, but I know when I’m audible and for you to pretend otherwise is crazy-making. If what you mean is that you aren’t bothered, then go ahead and tell me that! We don’t need to acknowledge every tic, but it helps while we get used to them being part of our conversations.

2. Please don’t laugh at the motor tics.

When I talk about my tics, I’m usually referring to the vocal or phonic tics, since mine are so verbally expressive. It seems that very few people notice my motor tics, but having those laughed at feels terrible. These have been on the mild side so far (knock on wood). Lately I jerk my head up and open my mouth, blink hard, repeatedly turn my head to the left, or give kind of a “what’s up?” greeting with my chin. Some people with TS have very severe motor tics. They hit or scratch themselves and may even use a wheelchair because their tics interfere with walking.

3. Know that they are involuntary.

I laugh at my tics a lot! They constantly surprise me. Sometimes my laughter makes it seem like I’m deliberately being a jackass instead of doing something involuntary. I realize they don’t always look completely random. My tics LOVE to answer people. They answer questions and finish sentences. They add “in your mouth” to the end of your sentence, or announce the colour of your eye-catching nail polish. If I’m in a casual situation I can laugh it off. In more formal settings, I try to suppress them and remove myself before causing a disruption.

Once I was at an art event that included a video piece. As the video played I worked hard to stay quiet but some squeaks escaped. When it was over, the man sitting next to me walked over to someone’s dog and said, “Oh hey little guy, you were making sounds during the movie. You hungry?”

Maybe I should get a dog.

4. Use the correct terms if you know them. Ask if you don’t.

Tourette Syndrome is correctly referred to as a neurological disability. It’s not an intellectual disability, and it’s not a mental illness. Tourette Syndrome is also not interchangeable with Autism. These are common misconceptions.There is nothing wrong with having any of these issues, but it is able-ist and “disphobic” to conflate them, dismiss them with inaccurate terms, or use the terms as put-downs. Also, the word “disability” is not a put-down.

5. Please don’t suggest cures.

Don’t suggest acupuncture or juicing. And no thanks on the exorcism offer, which is incredibly offensive. Fuck off. See, now that’s what we call contextual cursing — I meant it.

6. Please don’t assume what I can and can’t do.

If I go to your event, my tics will most likely be unnoticeable. I would love to speak to your class/do an artist talk/participate in your thing! I might even resume teaching at some point! I recently spoke at a college for about an hour and hardly ticced at all. Walking back to the car was another matter (ha!) but overall I really enjoyed it and the TS didn’t stop me.

— More information about Tourette Syndrome can be found on the National Tourette Syndrome Association site.
Thank you, Shannon, for allowing me to publish this on your blog! I love that you’ve let me be part of “fighting the war on shame.”

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