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.
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:
- “You have Tourette’s? Isn’t that where you, like, cuss all the time?”
- “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.)
- “Oh, I knew this guy once who had Tourette’s who did….yadah yadah yadah.”
- “Can’t you just…stop?”
- “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.)
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.
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.)
No 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.
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.
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!).