10 Things I Wish People Knew About Tourette Syndrome

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I have lived with Tourette syndrome (TS) for most of my life, but I was only diagnosed when I was 17. Technically I was told when I was 15, but I laughed it off due to my own ignorance about the condition. So for the benefit of those who are facing a TS diagnosis themselves or are just interested, let me tell you some lesser-known things about TS.

1. There is more to Tourette than swearing.

I cannot stress this enough. Although coprolalia, the fancy word for involuntary swearing, can be a symptom, it is surprisingly rarer than the majority of television shows would have you believe. Only an estimated 10 to 15 percent of people with Tourette syndrome swear involuntarily, me being one of them.

2. We can’t “just stop it.”

If only it was that easy! Yes, I know it’s an annoying noise and this really isn’t the best place to be making said noise, but I literally cannot stop! Many of us get what is known as a premonitory sensation or urge that can feel like an itch inside the body or a small jolt of electricity. Some of us can, and do, learn to suppress our tics, but it can be hard for us to do this. To help you understand, try not to blink. That horrid feeling that builds up in the back of your eyes — that’s what we get all over our bodies! Just as you will need to blink, we will eventually need to tic, and it can sometimes make it worse. So don’t ask us to suppress our tics!

3. It can be painful.

Although many tics are harmless, some can cause either minor or severe pain. This can be due to repetitive movements, punching or kicking things, biting and scratching ourselves and in my case, even running myself into walls at breakneck speed. If I injure one of my joints, my TS will focus on the injured limb and I won’t stop twisting it.

4. Some people have tic “storms” or fits.

Some of my friends in the Tourette community and I suffer from what we call “tic fits” or “storms” where we completely lose control of our bodies to tics. This can be scary and painful for us, and I believe it’s a poorly researched part of TS by professionals.

5. Laughing is fine… sometimes.

While we do have a sense of humor, you really need to know when it’s OK to laugh and when it isn’t. Generally speaking, my rule is “If I’m laughing, you may laugh, too.” It is extremely difficult not to laugh when I’ve shouted “Donkey Kong dropkicked a tortoise!” at random. If I am obviously not happy, don’t laugh! Always ask the individual with TS whether laughing is OK and when.

6. It often comes with “added extras.”

Many people don’t just have TS. Quite a lot of us also have obsessive compulsive disorder, attention deficit hyperactivity disorder, autistic spectrum disorder and various other issues, often to do with learning. I couldn’t write until I was 12 years old; others may struggle with reading or math.

7. Some of us don’t grow out of it.

Although a lot of doctors say that most people grow out of TS at around 18 years old, this isn’t always the case and about 5 to 10 percent of people with TS continue to have symptoms as adults.

8. Some activities can calm tics.

Some of us find that our tics reduce or disappear completely when we are engaged in certain activities, such as playing a musical instrument, jogging or other forms of exercise, playing computer games or spending time with an animal. Everyone is different in this respect, and I expect some of us don’t have a special activity, but some do. For me, it’s playing the guitar.

9. Pointing out tics can make them worse.

I can promise you that we are aware we are making noise or doing a strange movement. Pointing this out not only causes more embarrassment, but, for me, can also make me feel more like I need to do the tic. My dad once thought it would be helpful to point out that I was squeaking, but instead of stopping it, I could no longer control it!

10. There is no cure.

There is no cure at this moment. The only options for treatment include medications or, if the TS is severe, deep brain stimulation. Neither is a cure for TS but may reduce the severity of the symptoms. I don’t take medication for my TS because the side effects outweigh the benefits for me.

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How 2 Kids Saved My Son With Tourette's When He Couldn't Talk

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Yesterday after school, my second-grader climbed into the car and said something that struck me.

“Mom, something happened today. C and K saved me. They saved me when I couldn’t talk.”

Of course, I was thinking a million things! Did he choke at lunch? Was he gagged and bound by a bully who had vampire teeth and a tear-drop tattoo and these two brave kids came to his rescue? I’m a worrying helicopter mother, so, of course, my mind was going crazy with questions.

“P, tell me what happened!”

“Well, there were these two girls from another class, and I was doing one of my tics and couldn’t stop.”

It was a tic where his arms stiffen up and his hands shake. During this tic, his face also stiffens.

“They were telling me to stop it and told me that I was so weird,” he continued. “I wanted to say something, but I couldn’t because I couldn’t stop my tic. But C and K saved me. They told the girls I had Tourette syndrome and I couldn’t help it. They told them I wasn’t weird and it was my brain making me do it, and they shouldn’t be telling me to stop it because I can’t.”

Rewind: A few weeks ago, my son’s teacher, school counselor and a very sweet high school kid, who also has Tourette’s, came in to help P teach his class about what Tourette syndrome is and why P was doing these things called tics. When P asked the class, “How many of you have noticed me doing some of these movements and sounds?” The entire class raised their hands. I cried a little to myself sitting in the corner watching all of this. But not P, he just smiled and said, “See, that’s what my Tourette’s is!”

His amazing teacher said something I will never forget: “We are P’s family here at school. So now that you know about his Tourette’s, if you ever see or hear anyone making jokes or talking about it, it’s our job to help them to understand. We all have to look out for each other.”

They listened! Kids will listen when they are taught. It takes teachers, parents and other kids to help raise confident, happy children who feel accepted. P feeling that these boys “saved” him is so powerful. It was like he was being thrown a life raft. He needed a voice and luckily he ended up having two, even if they weren’t his own.

A little bit of help can go a long way. But here’s the kicker: Not only did they “save” my child in that moment, but those two boys showed character by standing up for others. They also taught two more children (the girls) about TS. I would march right up to that school and kiss them right on their faces if I could, but that would be creepy and so I won’t, but I’m so grateful. So very, very grateful.

Kristen's son

The Mighty is asking the following: Tell a story about a time someone helped you and/or your child when you needed it most. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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14 Truths People With Tourette Syndrome Wish Others Understood

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An estimated 138,000 children and teens in the U.S. live with Tourette syndrome, a disorder that affects both children and adults, according to Centers for Disease Control and Prevention. The neurological condition, characterized by quick, repetitive movements or vocalizations called “tics,” is sometimes misrepresented as uncontrollable swearing or yelling. But this isn’t always the case.

The Mighty wanted to hear from people who live with Tourette syndrome about what they wish others understood about their condition, so we reached out to the Tourette Association of America, an organization that supports people living with Tourette syndrome and tic disorders. The group asked its readers on Facebook to share one thing they wish others understood about living with Tourette syndrome.

Here’s what they had to say.

1. “Telling me to ‘just stop twitching’ makes as much sense as telling a person without legs to stand up.” — Patrick Ryan O’Leary

Tourette meme: telling me to just stop twitching makes as much as sense as telling a person without legs to stand up.

2. “It’s very difficult to control and suppress the physical and vocal tics. When my son has to complete any sentence he’s started, he must finish his thought; he’s not being rude.” — Vicki Burns

3. “Vocal tics can make it hard for your brain to relay to your mouth what you want to say and for your mouth to get it out.” — Christy Swigart

4. “Tourette syndrome is different in each person who has it, and you can’t assume one [person who has it] will behave like another.” — Helen Lopez

5. “There is so much more to Tourette syndrome than just tics. The conditions that often accompany Tourette syndrome can be just as much of a challenge.” — Michelle Rose

Tourette meme: there is so much more to Tourette syndrome than just tics.

6. “Just because someone with Tourette syndrome acts ‘normal’ one day doesn’t mean they are cured or faking the disorder. It’s cyclic, and [those who have it] can appear absolutely ‘normal’ on Monday and be a mess again by Friday.” — Helen Lopez

7. “Although [my son’s] tics keep him on the move, he isn’t trying to distract you or get into your space on purpose. He isn’t hyper; he literally cannot just stand still.” — Jennifer Howard

8. “Having Tourette syndrome doesn’t [make someone] less intelligent.” — Vicki Burns

9.  “Tourette syndrome is one part of my children. [It’s] not the most important part.” — Amanda Coffman

Tourette meme: Tourette syndrome is one part of my children. Its not the most important part."

10. “So much of Tourette syndrome is hidden but still very real.” — Jennifer Balley

11. “My son’s tics don’t bother him and they don’t bother me. But you staring bothers us both.” — Christy Vogel

12. “You cannot ‘will’ it out of a person.” — Brooke Alex

13. “Tourette syndrome is only a small part of what makes me, me. It doesn’t define me.” — Heather Kimball Ramsey

Tourette meme: Tourette syndrome is only a small part of what makes me, me. It doesn't define me.

14. “I wish people would see the real person, not the symptoms of their disorder.”  Judy Butler

Editor’s Note: The first line of this piece was reworded to acknowledge that Tourette Syndrome exists in the adult population as well, and tics may even worsen with age, though stats are less documented than they are with children.

Founded in 1972, the Tourette Association of America is dedicated to making life better for all individuals affected by Tourette syndrome and tic disorders. The only nationwide organization serving this community, the association works to raise awareness, fund research and provide on-going support. The association directs a network of 32 Chapters and more than 55 support groups across the country. For more information on Tourette and Tic Disorders, call 1-888-4-TOURET, visit www.tourette.org on Facebook, Twitter and YouTube.

 

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To the Man Whose Daughters Mocked My Tourette’s Syndrome Tics

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You may remember about a month ago that you were on a train with two children who I presume were your daughters. You took the seats behind me and my support worker, who clearly had her carer card displayed. Apparently, you didn’t notice this.

I was making weird noises, since I have Tourette’s syndrome (TS). In fact, I was traveling home from a meet-up with other people with Tourette’s. I was feeling good, happy even. I’m always a bit more “ticcy” after a meet-up, so I expected to have a bit more tics than usual. What I didn’t expect was for someone — your daughters, to be frank — to start copying every noise I made.

I don’t blame your daughters; they’re young, after all. But I blame you for what happened next. You made no attempt to tell your daughters to stop imitating my every noise and move. You didn’t tell them to stop staring at me through the gap in the chair (yes, I can see). You just sat there and let them mock me for approximately half of the journey.

Let me tell you something about Tourette’s. When I feel like people are watching me or imitating me, my tics will worsen. That’s why a curse word came out. I didn’t want it to come out. Apparently, you didn’t hear it the first time or chose to ignore it. But when your girls copied my foul outburst (see, I agree it’s foul), that’s when you became aggressive. “All right, who is that?” you said as you got up, standing parallel to my seat, probably looking for a large man. I expect you were quite surprised when you were “confronted” with was a 4-feet-8-inches-tall girl, convulsing in pain.

Thankfully, my support worker was with me that day. “Excuse me, she can’t control it,” she explained to you. “She has Tourette’s.” Your face was red as you turned to me, and I held my TS alert card up to you. Another man on the train started to talk to us about TS. Why couldn’t you have asked nicely, too?

What you didn’t see after you got off the train, two stops from my home, were the tears in my eyes. I was upset with you, not your daughters. You had a perfect opportunity to teach them about my disorder, but instead you chose to allow them to mock me. Would you have allowed them to make fun of people with other disabilities or disorders? I can’t answer that for you, however, I would guess you wouldn’t. Your ignorance made my worst tic come out in public.

So I hope we never meet again, but I would implore you that if you read this, please teach your children about tolerance for people who are different. Maybe you’ll learn something, too.

From a girl who is frightened to travel on public transport.

Lucy Clapham the mighty.2-001

Follow this journey on Living With Autism.

The Mighty is asking the following: Share with us the moment you stood up for yourself or your child in regards to disability or disease, or a moment you wish you had? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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Refreshing Video on Teen’s Mental Illness Wins Top Prize

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Becca Calla has overcome a dark, difficult past and found beauty in her story.

Calla lives with Tourette syndrome, obsessive-compulsive disorder (OCD), pervasive developmental disorders (PDDs) and attention deficit hyperactivity disorder (ADHD). Sometimes, people have a hard time understanding her behavior. But now, she’s learned to release energy in healthy ways. She’s a kick-ass violin player, for example.

With the two-minute video below, Calla’s classmates Natasha Boshoff and Suaad Issa won Children’s Mental Health Ontario‘s 2014 Change the View Anti-Stigma Film Fest.

“Ask anyone that knows me now,” she says in the clip. “I’m the happiest girl because I know I’m getting the right support and help I need.”


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It's OK to Lose Yourself as a Momma

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I used to be that person — that girl.

You know, the one who always said I’d never lose myself, the one who got irritated trying to have a conversation with a friend with what sounded like a daycare in the background, the one who rolled her eyes when another friend was too tired to come out for a girls night, the one who promised herself that my children wouldn’t consume me.

Well, hello delusional, judgmental, not-a-clue-in-the-world gal before babes — Welcome to Mommyhood. How’s it feel now?

I’m so far gone in the direction I thought I wouldn’t be, that I might just be the biggest hypocrite to walk the planet. Well, maybe not the biggest, but truly, I am obsessed with my little hooligans and absolutely lost myself somewhere between the constant snuggles and peeing while getting cheered on by a toddler.

But you know what? It’s OK.

It’s OK to be consumed for awhile. Awhile will be gone before you know it. Every day a small part of me aches when a new word is said, a shoe doesn’t fit or a snuggle is shortened.

mom with two kids

It’s OK to be so utterly tired you don’t know what day it is, you can only tell the time by what is on “Treehouse TV” and you haven’t showered in days.

mom holding up baby

It’s OK to not want to go out past your kids’ bedtime because the thought of getting out of your yoga pants, being up past 11 and finding a sitter is exhausting.

mom sitting with two kids

It’s OK to only have real phone conversations with friends when driving around and around in your minivan to keep your leeches , children physically off you, so you can actually talk.

mom kissing baby

It’s OK to have beans and toast for dinner because the thought of lugging more than one child to the grocery store is an event in itself, let alone the task of making dinner.

mom sitting with two kids

It’s OK that you take 76 pictures a day of your kids because to you, they are your world, and the pride you feel for them is like none other.

mom and baby laughing

It’s OK to find unbelievable happiness in watching and nurturing something you made.

mom hugging two kids

It’s OK, mommas, to lose yourself. Yourself is not, nor can it ever be what it once was. Embrace it. Grow with it. Love it.

mom holding baby

Soon enough you’ll have that time to reconnect with your old self again, but don’t be scared if she’s different. She’s bound to be Stronger. Wiser. Kinder. Funnier. She now knows a love unlike any other — a love so fierce it’s impelled to consume what she once was.

So as I reflect on Mother’s Day, as much as I loved my old self and as my hooligans grow up, I’m sure pieces of her will come back. I have to say I’ve never loved me more and that’s because of what becoming a momma did to me.

Happy Momma’s Day, friends. Hope you feel loved beyond.

This post was originally published on the Happy Soul Project.

The Mighty is asking the following: Write a thank-you letter to someone you never expected you’d thank. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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