What It’s Like to Have Tourette’s: A Guest Blog by Ellen

What It’s Like to Have Tourette’s: A Guest Blog by Ellen

People are surprisingly bad at seeing minute details.

This has been what’s kept our species alive for so long. If our ancestors heard a lion roar and saw a large shape prowling in the grass, they couldn’t afford to stand there and filter through all of the information pouring in from their five senses. They had to take in enough to get a general picture so they could react in time. Those who saw the lion and made a run for it were much more likely to be able to continue to live and have babies, while the person going over every little detail coming in to them before coming to a generalization was likely to be lion food.

It’s been in our best interest to scan something, generalize and then react off of that generalization. We’ve become especially adept at doing with facial expressions, which is how we can tell if someone’s mad and might potentially hurt us, or if they’re happy and it’s safe to approach them. Without this very necessary evolutionary gift, we wouldn’t be likely to have been able to have a society, much less survive.

When you’re walking down the street, your brain is telling you ‘okay, this person is happy, that person is angry and holding a knife, let’s avoid them’. It probably isn’t telling you that someone is missing a button or has a slight limp or that they are shutting their eyes compulsively unless you’re looking for that detail. It’s that reason that I could walk by you while ticcing and you wouldn’t be likely to give me a second thought, much less go ‘Oh, that person is ticcing.’. Your brain has no reason to view my tic as a danger to you, so it dismisses it as unimportant filler to disregard.

Most people with Tourette’s are able to live normal lives with little notice given to them for this reason. Our tics are so benign or minor that you have no real reason to notice them unless you’re looking for them. This is generally a good thing, since it saves a lot of embarrassment once the person with Tourette’s realizes that there’s not a lot of reason to feel self conscious over something that hardly anyone even sees. However, this can be bad because the only tics that the average person notices are the ones that our brains consider to be threatening.

If you see someone suddenly start yelling swear words, your brain will assume ‘this person is angry and potentially about to start a fight, you need to notice this person so you don’t get hurt by them’. Usually, this is a very good assumption that has, and will likely continue to, keep you out of harm’s way. The problem comes when you learn that the behavior that’s put your brain on edge is called Tourette’s and since that person is the only one you’ve noticed with Tourette’s, you assume that it’s all there is to the disorder.

What most people don’t know about Tourette’s is that there are different kinds of ticcing compulsions. They aren’t really subtypes or different kinds of Tourette’s, but they’re used to describe what kinds of compulsions someone feels. The three most common ones are named coprolalia, echolalia and echopraxia.

If you watch people have a conversation, you’ll notice that they often start unconsciously mimicking each other’s posture and moments. What that does is to say through body language ‘I’m just like you. I understand, because I’m like you’. We don’t mean to do it, but it just happens. Echopraxia is that phenomenon taken to an irrational extreme. When someone has echopraxic tics, it means that they feel the compulsion to physically repeat an action that someone else is doing or has done. Even the thought of that action can be enough to set off a tic. For instance, if I start to think about my tics, I will start to feel the need to do my physical tics because I’m thinking about them. Interestingly, someone can have echopraxic tics without having Tourette’s, as Tourette’s requires someone to have physical tics and at least one verbal tic.

Echolalic tics are the verbal equivalent to echopraxic tics. An echolalic tic is one in which you feel the compulsive and involuntary need to repeat a sound from the outside world, or from inside your head. For instance, someone with echolalia might feel hear the register beep at a store and feel the compulsion to recreate that sound or they may have an intrusive thought and blurt out that thought out. Echolalic tics are pretty common, however it seems to be much more common for people with echolalic tics to be able to hold off ticcing until they’re alone. They can’t make the tic go away, but they can often deal with the discomfort until in a private setting.

Coprolalic tics are the ones that the general public generally thinks of when they think of Tourette’s. People who have coprolalic tics have the compulsive and involuntary need to say the most inappropriate things that are often sexist, racist, homophobic, misogynistic or just plain cruel. The whole point of coprolalia is to say things that the sufferer knows are awful, but they just can’t help but say it. If someone with coprolalic tics sees someone who’s fat and they know that the worst thing to say to that person is ‘piggy’, that’s the word they say. They know that it’s terrible and bad but it is something entirely out of their control, and is generally deeply shameful to the person to say.

I don’t like to refer to myself as someone who suffers from Tourette’s as I have only have mild echolalia and echopraxia. I can walk through my life and ‘pass’ as someone without the syndrome. But I wouldn’t hesitate to refer to someone with coprolalia as someone truly suffering from the disorder. I’ve had yet to meet someone or even hear of someone who likes their coprolalia or the things that it forces them to say. Beyond that, the coprolalia means that their Tourette’s is made into something very obvious and public. Imagine going into a store to pick up some bread knowing that you are likely going to hurt and offend someone solely because you do not want to hurt or offend them. Try to picture the helplessness that you would feel having that big of a loss of control over your own body.

You might be wondering what you can do if you come across someone afflicted with coprolalia. The best thing that I can suggest is to understand that the person saying those awful things is only saying them because they know that they are wrong. Give them an understanding smile and try to ignore it, and that should help the tics to subside. Tourette’s gets worse as someone gets stressed or anxious, so the best thing you can do is to facilitate stress reduction. Whether that’s letting the person go to a quiet place with less simulation or by simply not making a big deal out of it, you will be helping that person to gain back some of their dignity.

With that being said, there’s not a lot that I hate more than feeling pitied about my Tourette’s. It is what it is. I can’t stop it, and I can’t make it go away, so I’ve come to accept it and move on with my life. You have to find humor in the stupid, weird quirks that you do, because there are two options that you can do when faced with the inevitable. You can either cry about it, or you can find the humor in it. And frankly, crying about it is exhausting. I’d much rather laugh about it.

I’ve never had anyone laugh at my Tourette’s, but if they did, I don’t think that I’d mind too much. I make some seriously awesome sounds when I tic that should be appreciated for their glory. So long as you’re laughing with me and have some understanding of why I’m doing this, people are welcome to find humor in my tics. It’s for that reason that I really like ‘La Petite Tourette’, the episode of South Park when Cartman pretends to have Tourette’s so he can swear whenever he wanted. Not only did the script point out how Cartman’s plan was awful, but it also showed the struggles that people with Tourette’s do go through. The support group in particular was a great scene, even if some of the tics were played for laughs. But they still discussed how it feels to not have control and feel like you’re an embarrassment. They were showing understanding for the syndrome. Yes, they did so in a crass and slightly offensive way, but it’s South Park. They’re there to make a point while being funny, and they do it well.

What I do hate is the ‘Tourette’s Guy’ series of Youtube videos, if only for the fact that when I mention that I have Tourette’s, he always gets brought up. For those who are lucky enough to not have watched his videos, they feature an alcoholic who wears a neck brace because people beat him up constantly for saying terrible things. He says stupid and offensive things in his videos and that’s basically the jist of it. If they had called him ‘Dumbass Guy’ I would have no problem with it. But nope, he’s ‘Tourette’s Guy.’

If he has Tourette’s, he doesn’t have coprolalic tics, at least not ones that cause him to say the types of things he says. But to the people who watch his videos who have never met someone who actually have Tourette’s, he becomes their mental image of what the disorder is. In my head, it’s like looking at the Buffalo Bill character in Silence of the Lambs and going ‘Oh, so all crossdressers are like that.’ Besides that, I hate the fact that he’s specifically misrepresenting coprolalia and making it seem like people are saying those things because they want to and have no shame in doing so. Not to mention the fact that the Tourette’s Guy getting beaten up for his ‘tics’ is played up as being funny, which ends up making it seem okay and like he deserved to get beaten up badly enough to get put into a neck brace. That is the kind of misrepresentation that can get someone killed.

If you’ve watched those videos and laughed, that’s okay, I’m not going to hate you for it. So long as people understand what the syndrome does and how it effects someone, you can watch a moronic parody all day so long as you do not begin to believe that the parody is in any way truthful. Comedy is great and it’s sometimes offensive and Tourette’s can be funny. I would much rather have someone laugh at me than tell me that I can cure my Tourette’s by accepting Jesus as my savior. (Yes, that has actually happened.) All that I ask is that Tourette’s isn’t misrepresented.

The best way to keep the disorder from being misrepresented is, in my opinion, to be open about it. People aren’t going to understand how it feels to have Tourette’s unless they have a personal connection to the disorder. It reminds me of coming out of the closet in a way. When people with mild Tourette’s remove themselves from their incognito life and thrust themselves out into the open, it opens up a dialogue that is sorely needed. It’s kind of a scary concept because Tourette’s can be embarrassing and no one likes to be seen as weird, but staying quiet and unassuming has never been what creates change.

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