Busting 5 Myths about Tourette’s Syndrome

Busting5mythsabouttourettessyndrome

Telling someone you’ve got Tourette’s Syndrome is like busting open a pinata. (Well, a pinata filled with candy, worms, corn bread, and last week’s mystery lunch meat from the cafeteria.) You never know what reaction you’re going to get.

Pinata

As I’ve said before, my Tourette’s isn’t as obvious as other individuals’. My tics are definitely there, but they’re not always visible. Most people are surprised when I tell them I have Tourette’s. (I think I come off more as just extremely energetic, somewhat jumpy.) These are the most common responses I get when I break the news:

  1. “You have Tourette’s? Isn’t that where you, like, cuss all the time?”
  2. “You have Tourette’s? I totally couldn’t tell.” (Honestly, this response isn’t a bad one. It’s generally what people with Tourette’s want to hear or wish they could hear.)
  3. “Oh, I knew this guy once who had Tourette’s who did….yadah yadah  yadah.”
  4. “Can’t you just…stop?”
  5. “Oh! I know what Tourette’s is! It was on South Park once, and Cartman got Tourette’s because he was pretending to get it, then he really got it!”

I’ll be the first one to tell you that I’m not above laughing at myself. I’m aware that things I do look funny sometimes. But the more I talk to people, the more I’m realizing Tourette’s is shrouded in myth for the majority of our society. That’s why today’s post addresses five of the most common misconceptions about Tourette’s Syndrome.

Myth #1: “Tourette’s is where you curse all the time.”

I can’t tell you how many times I’ve heard this one. (Generally, I’m told this after the person’s been listening to me speak for at least five minutes, during which I’ve been carrying on, at least in my opinion, a somewhat normal conversation.)

Facepalm

By definition of National Tourette Syndrome Association, Tourette’s is, “Tourette Syndrome (TS) is a neurological disorder characterized by tics — involuntary, rapid, sudden movements or vocalizations that occur repeatedly in the same way.”

In the definition, Tourette’s has nothing to do with cursing. Tourette’s is characterized by tics. There really isn’t a limit to the number of tics the brain can come up with. Common tics are blinking, coughing, throat clearing, arm flapping, and barking, just to name a few. Just like blinking can be a tic, cursing or doing obscene gestures can also be tics (with can being the key word).

This cursing or obscene gesturing is actually only found in a very small portion of the population with Tourette’s, only 5%-15% of people diagnosed, according to the Counseling Directory. This symptom of Tourette’s Syndrome is called Coprolalia.

Coprolalia

Unfortunately, the media has jumped on this very small part of Tourette’s and run with it, making it the most defining characteristic (falsely) of the disorder. People think it sounds great to be excused for constant obscenity. What they don’t realize, however, is that those who truly have Coprolalia really do suffer. Believe me, the negative attention this symptom draws far outweighs the “cool” aspect of having an excuse to curse. Feeling like someone is forcing you to curse isn’t funny; it can make you feel like a slave to your body, which acts without your conscious permission.

Myth #2: “I can’t see his Tourette’s, so he must be making it up for attention.”

When I tell people I have Tourette’s, I get a few skeptical looks. I have three major tics that play hopscotch with other tics that pop up when I’m extra anxious. Two of my main three tics are generally ones that go unseen.

  • The first is where I tighten all the muscles of my body, one set at a time. Unless it’s a bad day for me, people generally don’t see it because I’m technically just tightening muscles I use everyday….only I’m doing it constantly. When I was little, I got stomach aches from squeezing my muscles so hard.
  • The second tic is a vocal tic. When I’m really stressed, I’ll let some squeaks slip out. Over the years, I’ve trained myself to breathe a certain way so people can’t hear me. But as much as I practice, they’re always there, waiting in the wings for me to drop my guard.

The only (constant) tic I have that’s visible is a complex tic, where I curl my right hand up and rub my lip with my thumb. (For some reason, people find this tic annoying. My only guess as to the reason is that it’s because they don’t like talking to me with my hand up to my face.)

Just because my tics aren’t visible doesn’t mean they’re not there. Others may not be able to see my tics, but believe me, I’m generally well aware that my body ticcing, and so are most others with the disorder. The moral of this story? Don’t just a book by its cover.

Myth #3: All cases of Tourette’s are the same.

This all goes back to Tourette’s being a spectrum disorder. (If you click on my image below, it’ll take you my post about how spectrum disorders work.)

Tourette SpectrumNo two cases of Tourette’s Syndrome are alike. Yes, I know everyone has a story about someone they met with Tourette’s who did this or that. What people fail to realize, however, is that just because one person with Tourette’s does something, you can’t assume the next person with Tourette’s will do the same thing.

Scientific American’s article, “Jumping Genes in the Brain Ensure That Even Identical Twins Are Different,” says this about the human brain.

“Differences arise at every level of the organ’s [the brain’s] astonishingly intricate architecture; the human brain contains 100 billion neurons, which come in thousands of types and collectively form an estimate of more than 100 trillion interconnections. These differences, in turn, lead to variances in the ways we think, learn and behave and in our propensity for mental illness.”

Basically, every brain is unique, even those of identical twins. Why? Because from the moment we’re conceived, each of us undergoes different experiences, those we remember and those we don’t. Even if you can’t remember something, your body remembers for you. Neuron connections are created based on your experiences. Thus, even those with the same genes have very different brains.

This means that each case of Tourette’s (and all other neurological disorders) is different. My tics and how I handle them will differ from all other people with Tourette’s because my brain is unique. While there are certain characteristics of Tourette’s that are often shared in those with Tourette’s, sweeping judgements about everyone with the disorder will end up producing inaccurate statements and hurtful words.

Myth #4: “You could stop ticcing if you really wanted to.”

Believe me, most people with Tourette’s would tell you they really, really, REALLY wish they could stop ticcing. If a girl with a blinking tic could stop blinking, it would mean she’d be able to read a page of her homework without being interrupted every sentence. If a boy with a barking tic could stop barking, it would mean he could go to a theater and watch the newest Star Trek movie without getting dirty looks and rude comments from annoyed patrons. If a man with a self-injurious tic like hitting himself could stop, he’d have fewer bruises at the end of each day.

Let me give you an example of what it feels like to tic. I got a sinus infection a few weeks ago, and I’m still trying to get rid of the cough that came with it. While I was trying to think of a good way to describe how it feels to tic, it hit me in the form of a coughing attack.

Needtotic

You know that tickle in your chest that tells you that you need to cough? The kind that comes when you’re trying to sleep but your coughing is keeping you awake? You want to cough. Your breathing changes, and you’re doing everything in your power not to give in. As much as you might try, however, you will eventually have to cough, and your coughing fit will be worse in the end because you’ve worked so hard to hold it in.

It’s the same way with tics. You can feel them coming, and you can delay them a little while, but eventually, they will come, and they often return with a vengeance. The Cleaveland Clinic says that while the actual cause for Tourette’s is unknown, it’s believed to be hereditary, and tics are most likely caused by a chemical imbalance in the brain.

So no, people with Tourette’s can’t, “just stop.”

Myth #5: “Tourette’s comes and goes at random.”

As I explained in Myth #4, Tourette’s has been shown to be genetic. My father had a tic disorder when he was a child (although his, like the majority of tic disorders, seemed to disappear when he got older.), so it makes sense that I have Tourette’s. (Just a reminder, Tourette’s Syndrome is the more severe version of a Tic Disorder.)

In order to qualify for Tourette’s, the Center of Disease Control (CDC) says that someone must have

  • multiple physical and vocal tics
  • tics that last over a year (otherwise it’s called a Transient Tic Disorder)
  • tics that started before the individual was eighteen
  • tics that aren’t due to a medicine or other medical condition

Basically, if someone says he randomly develops Tourette’s Syndrome every now and then, or the disorder suddenly shows up when he’s twenty-five, it’s not true Tourette’s Syndrome. The condition might have similar symptoms that are caused by something else.

In Conclusion

Tourette’s Syndrome is a neurological disorder that’s hard to understand because, frankly, scientists don’t quite understand it yet either. Hopefully, today’s post is helpful in clarifying what this confusing disorder is not. The media hasn’t been helpful in perpetuating a truthful version of what this disorder really is. The point of this post and others like it, however, has been to clear up those misconceptions. The more people who understand what really goes on in the minds and bodies of individuals with Tourette’s, the more freedom those individuals will feel as they strive to live their lives to the fullest in everyday life.

What do you think about Tourette’s and the media? Please post your thoughts in my comment box below or feel free to email me. Also, don’t forget to suscribe to my weekly newsletters for extra resources on neurological disorders, education, and encouragement (and a thank you gift for signing up!).

Posted under: Neurological Disorders, Tourette Syndrome

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18 comments

  • Abby on October 16, 2013 at 9:01 pm said:

    This is a story after my own heart. I have Tourette’s disorder also. I’m a highly educated, high functioning 24 year old woman, and when I end up telling someone that I have the disorder I’m always responded to with shock and disbelief. I have to patiently explain what it’s like, and that no, I don’t swear.
    It’s always a bit scary to tell someone new, but I’ve never told someone about it and had them be completely aversive to it and never talk to me again. Most people are intrigued, and I feel empowered breaking their mislead thoughts about the disorder.
    Thank you for this article, I particularly like the coughing fit analogy, and I may use that when I try to explain to others what it’s like to have this disorder.

    • brittanyfichterwrites@gmail.com on October 16, 2013 at 10:49 pm said:

      Wow, we could be twins! Thanks for sharing! It’s always encouraging to find others in similar situations! What prompted me to post this was when I was recently discussing the topic of drinking coffee at the workplace. The woman I was talking with knows I work in an elementary school. I laughed and said that while I like caffeien, my Tourette’s doesn’t. Her response was, “Yeah, don’t want to go cussing out the kindergartners.” While I know she didn’t mean anything offensive by it, it caught me off guard and stung a little more than I expected. Thank you so much for sharing! Please share your thoughts in any of these posts you can connect to. I’d love to hear your opinion!

  • John McGuirk on April 3, 2014 at 4:49 pm said:

    Unfortunately, the media always tends to gravitate towards the most provocative aspects of any condition, ignoring the majority of cases and focusing on the most dramatic. For me, I think the media needs to take more responsibility in this, and until it does, articles like this are really helpful to counter the myths that form as a consequence of irresponsible reportage.

    • brittanyfichterwrites@gmail.com on April 5, 2014 at 7:26 pm said:

      You’re so right. I’d love to see more movies and books published about disorders, ones that really open up and show the way these disorders touch lives (and maybe even include the damage stereotypes can do). In the meantime, we can just keep spreading truth, one person at a time. Great point!

  • alec on April 3, 2014 at 9:53 pm said:

    Hi there, excellent post. I particularly like the coughing fit analogy, I like to think of my toyrettes in exactly the same way. Just for your information, I was diagnosed with tourettes at 21 after a rapid onset of tics at 21 so I was over 18 and still diagnosed with tourettes by two different neurologists. So it would appear you don’t need to be under 18 after all. Thanks for sharing this.

    • brittanyfichterwrites@gmail.com on April 5, 2014 at 7:18 pm said:

      Why, thank you! Believe it or not, that analogy came to me while I was lying sick in bed, coughing my head off. That’s interesting to know. I’ve heard of quite a few people being diagnosed as adults. I should probably clarify that in order to qualify for Tourettes, the symptoms have to set in before adulthood. There are quite a few people, however, who aren’t diagnosed until they’re older. Thanks so much for chiming in!

  • Michelle on March 2, 2015 at 9:22 pm said:

    My son has been having tics now for three weeks the longest and most noticeable outburst he’s had brief tics over the years but nothing that’s made me worry any, so going into our fourth week he’s now having what appear to be little fits and siezzures when he eventually starts to doze off to sleep and this Wakes him up. He’s now been throwing up all day today I’m hoping its a bug and not induced by fear of going back to school or another attribute to what’s going on ! Hospital next week for an assessment can’t come quick enough feeling total despair at the minute 🙁

    • brittanyfichterwrites@gmail.com on March 4, 2015 at 1:59 pm said:

      Michelle, I’m so sorry to hear that. I can’t imagine how frightening that must be. I’ll be in prayer for your little guy and your family. I’m curious about his tics. You say they’ve come and gone over the years. I know that tics can sometimes accompany other conditions. Please don’t hesitate to email me if you need someone to talk to. I’d like to hear what they decide based on the tests.

  • Miranda on September 16, 2015 at 3:02 am said:

    i feel for all of you that have to deal with this also, im 14 and i know the real struggles of having Tourettes, i get asked so often why i bark or why i bob my head. some people just laugh, some tell me to stop. if i had a dollar for every time a teacher asked whos making thoses noices, and to stop id be rich. High School isnt easy when you feel like an outcast and i get so sick of all the questions. my friends say they cant tell but i know when im doing it and it kills me inside, i get so embarrased and my friends can tell that it annoys me so much, but as most of you know you cant just stop, like it said in the article, its like a coughing fit, you hold it in but when you do finally cough its worse than it would have been before.

    • brittanyfichterwrites@gmail.com on September 19, 2015 at 2:08 pm said:

      I’m sorry to hear you’re struggling with this so much right now. I remember how hard fourteen is, and you don’t need Tourettes “helping” you anymore. (The telling me to stop thing is one of my pet peeves!) I know this is hard, but have you considered telling your teachers privately? I was adamant that I wasn’t going to let anyone at my school know, but in college, it reached an all-time high. I told some of my professors when I started having to leave the classroom because of tic/anxiety attacks. If you don’t want to tell them yourself, maybe consider asking your school counselor to help advocate for you. Self-advocating is extremely hard. Believe me, I know. And it doesn’t always go the way you think it will. Sometimes, however, it goes even better. And as a licensed teacher, I can tell you that legally, your counselors and teachers are supposed to help you keep secrets like that quiet while working to meet your needs. Feel free to email me sometime if you need someone to talk to, or want help with understanding the system and who you should talk to. You shouldn’t have to go through this alone.

  • Stephen on April 28, 2016 at 7:38 am said:

    It’s great to see many people talk about their tics! I’m a male so no surprise I have TS, as what I call it given my mother had a mild tic disorder and TS is more common in males. In school I had a program that let me take a break from class and take state tests in less populated rooms. I was diagnosed with Sever Tourette’s when I was about 11, though I had already had tics since I was 8. Nothing really calms me, while listening to music (it is very exciting and fast music, as that is what Punk Rock mainly sounds like – ironically this is also not very common in my area). I am a very passionate gamer, and video games also calm my tics. Funny enough, I know a person online that also has TS.

    • brittanyfichterwrites@gmail.com on April 28, 2016 at 7:51 pm said:

      Interestingly enough, many people with ADHD report that their attention improves and their hyperactivity goes down while playing video games. I hope they do more study in this area to see how it affects the brain. Perhaps we can use something like that in the future to adjust our education styles to what our kids need! I’m curious, have you ever tried adult coloring books? It’s strange, but activities like that really help me focus my energy. I would love to hear if it helps others with Tourettes as well.

      • Stephen on April 30, 2016 at 6:26 am said:

        I am a very heavy artist, and do a lot of artwork as my pastime. I find it extremely easy to focus in, and in middle school I had an advanced art class that I really enjoy. And I agree, maybe someone will do some research as to why electronics help in general, but I find it very easy to focus so that is probably why.

        • brittanyfichterwrites@gmail.com on May 6, 2016 at 2:54 pm said:

          That’s awesome to hear! What kind of art do you like to do? I have a friend on Twitter who does photography, and his images are amazing. He says that for whatever reason, he can take pictures, even though that seems like it would be extremely difficult with all of the ticcing. I’ve personally found that doodling during church helps me to focus and not to tic so much. I wonder how much of it has to do with the fact that art and crafts help people destress, which also lowers tics.

  • Dustin on December 12, 2016 at 4:07 am said:

    My tourettes is much better at 36 than it was at nine. It seems to decrease slightly as I get older. I used to lick my hands and slap myself…lick my lips until they were raw and bleeding…peel skin from my lips…it was horrible….now, it’s throat clearing, eye widening, squeaks and praying….it’s all OK except the constant praying. And I’m not even very religious….sire I believe on god, but I’ve never been to church…never read the Bible… It consumes me….I cannot concentrate….dexidrine helps but it’s not long lasting…. I work 3 jobs, I have several children…my fiance is a highly educated RN that can easily look past my tics and see me. For that I am very greatful….all of my children have tourettes and my fiance is now pregnant again…I know this baby will have it but I’m still hopeful…the anxiety that accompanies Tourettes, is something I would never wish on my worst enemy….. We manage…we get by…school is accommodating…my children are very smart…infact, my 7 yr old is reading a fourth grade level…and is amazing at math… My case was studied in 1988 with me spending weeks at university of Iowa Hospital…. Eegs, blood labs, monitoring… different meds…. if my parents would have just left it alone I think it would have been as big of a deal to me as it was to them

    • brittanyfichterwrites@gmail.com on January 24, 2017 at 4:07 am said:

      Dustin, please forgive me for taking so long to respond. With the holiday season and some serious deadlines for my other writing business, I’ve neglected checking these comments for too long. Anywho, thank you so much for sharing your story. Your improvement actually isn’t weird at all, as many individuals with Tourettes find some respite as they reach adulthood.

      I’m curious, if you don’t mind me asking, but is your praying more something you do just when you’re nervous, or is it something you have to do a certain number of times? For example, I used to say, “In Jesus’s name, amen,” three times. I found out later that this was more related to my OCD symptoms than my actual tics. Although, they often really overlap for me.

      I definitely can’t tell you what to do or how to fix your struggles (If there was an easy answer, we wouldn’t all be here, would we?) but have you considered examining the Bible to see some of the prayers in there? It might sound silly, but seeing some of David’s prayers in the psalms might help you get the cycle your own repetitive prayers broken up a little. David’s prayers are earnest and often written from a place of pain and frustration and suffering. Sometimes when I’m feeling like my mental prayers are going to drive me nuts (because they do try from time to time), I will simply read the psalms. Sometimes I’ll even pray along with them. It’s a beautiful way to talk to God and simultaneously feel like I’ve won a battle against the repetitive prayers in my head. They’re also great for helping to ease my anxiety. I’ll meditate on them sometimes with relaxing hymns (Indelible Grace, Sovereign Grace, Rich Mullins, or the Gettys) in the background. It helps me to clear my head and start anew. Repetitive thoughts will grow the more you feed them, and the prayers that aren’t even really prayers will do just the same.

      Again, I’m no medical professional, but these are just a few of the things that help me. By the way, it sounds like you’ve got a lovely family. I’m excited for you that you have such a gem of a spouse. She sounds like an awesome lady.

  • cricket on February 24, 2017 at 12:59 am said:

    Wow! Very informative. I’m diagnosed with tourrettes. I’m 13 and get bullied at school. It is good to know I am not the only one with tourette. It will help others know we can help it.

    • brittanyfichterwrites@gmail.com on March 20, 2017 at 2:44 am said:

      I’m so sorry to hear that you’re being bullied. People who don’t understand differences can be so cruel. Please feel free to (1) talk to your parents, counselor, and/or a teacher when this happens. You have rights through the ADA that others can’t take away from you, and you deserve to be treated with respect. (2) Please feel free to email me if you ever need to vent. I’d be happy to talk! Middle school was really hard for me. I was bullied, too. But it doesn’t have to beat you. You can beat it!

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