Day 7: Tourette Awareness 2020

Day 7: Tourette Awareness 2020

Let’s talk a bit about coprolalia.

Most people think that having Tourette Syndrome means swearing uncontrollably… in large part we have the media to thank for this. Movies commonly use this as entertainment fodder. News articles use them as headlines (there was one last year where a journalist claimed a political party was “spouting lies as if they had Tourette syndrome” which for the record was inaccurate, and ignorant. People with TS are no more prone to lying than anyone else… so that journalist was clearly ignorant about Tourette syndrome, and not a good writer, but I digress!). It is time that the media, be it movies, journalism, etc. stop using these examples of what TS is.

When we tell people “I have Tourette Syndrome” the first question or comment is almost always about “oh that is the swearing disorder”, “oh so you swear a lot?”, “oh I wish I had that so I could swear at people and not get in trouble” , “but you don’t swear”, so on and so forth.

This condition is called Coprolalia, and only about 10% of the population with TS has coprolalia. It just gets more attention because it becomes sensationalized.

Now here is why it is a problem that this is the first assumption made:

  1. It can be incredibly HURTFUL for someone with TS, who DOES have coprolalia to hear someone ELSE with TS who does NOT have Coprolalia defend their TS status with “Oh but I don’t have coprolalia, so its ok”. Please be aware of this, if you need to clarify that you do not have coprolalia do so but try and do it in a way that does not insult those who do.
  2. Imagine having everyone assume that your TS means you run around swearing all the time, and that somehow that is fun (fun enough to wish you had it as an excuse, or for a laugh). Now let me break this down.
    You and your friend go out for a dinner and movie. You are wracked with anxiety because you know how you come across to the world. You sit down in the restaurant and start to tic… (you swear). EVERYONE turns to look at you. The manager comes over after two tables make a complaint. You tell the manager you have a neurological condition called Tourette Syndrome that makes you swear, that you cannot help it, and the manager responds to tell you there is nothing he/she can do because they don’t want to lose customers – so you just need to leave.  You gather your things and leave while trying not to show emotion. Now imagine this happens A LOT.
    You go to the movies… you and your friend sit down with your snacks … and you begin to tic. You try to suppress it but cannot. The manager comes over and says you need to leave; you are being disruptive, and everyone paid for their tickets. You once again get up and leave.
    Imagine this happens in public everywhere you go. OR WORSE people think you are being a shit, egging them on, trying to start a fight or a problem? Imagine grocery stores and having to shop and dealing with this, or the bank!
    Now imagine that this happens every time you leave the house. People think you are mentally unwell and bully you, they call you names, they call the police because clearly you are on drugs, etc.
    NOW imagine the anxiety you live with.
    I am not saying this is EVERYONES Experience, but I am saying that this is often the reality of someone with Coprolalia.
    Statistically someone with TS is more than 4 times likely to die by suicide than average population. SO before making a joke of Tourette syndrome please reconsider before supporting these forms of media.

If you see someone with TS or coprolalia being bullied, stand up and advocate for them.

If you see a movie features TS or coprolalia as a funny entertainment source? Walk out, ask for your money back, speak out!

If you see a news article disparaging someone with TS or Coprolalia, write to the editor, make a fuss.

We need your help to end this ignorance.

I will talk more about other tics, and “what about jokes” in another post. We, with TS, usually have GREAT humor… but there are lines for most of us… we will discuss that soon.

Thanks for reading!