Having Tourette has definitely made my life different. It\u2019s hard to be \u201cnormal\u201d when I\u2019m always drawing people\u2019s attention for the weird sounds I make or the odd behaviors that I just can\u2019t stop doing. I avoid a lot of situations especially crowded places where people stare and sometimes openly laugh. I deal with aches and injuries when my tics get bad.<\/p>\n
On bad days it can make it impossible to work with my hands, a big problem for someone who works with tiny pieces of wire. I wait for movies to come out on DVD rather than risk upsetting other movie goers with my often loud vocal tics. When I was in school, my outbursts were disruptive to classes, teachers were often frustrated with me and other students weren\u2019t exactly accepting of my weirdness.<\/p>\n
As many negatives as Tourette has brought to my life I\u2019m not sure I\u2019d ever want to get rid of it. With all the bad it has also brought good. I am a different person with Tourette, a better person, than I would have been without it. I know what it\u2019s like to be different and I\u2019m a more accepting person for it.<\/p>\n
I grew up knowing I was different but not knowing why. I remember how that felt so now I make myself available to parents of children with Tourette to help them understand what their children are going through. I know what it\u2019s like being bullied and having no one stand up for me. I also know what it\u2019s like to have that one person stand up for me so I try to be that person for others. I like the person I am and I\u2019m sure that had I not been through the struggles of life with Tourette I would not be the same person.<\/p>\n
If there were one thing I would change it would be people\u2019s perception of the disorder.<\/p>\n
When I tell people that I have Tourette most have little to no understanding of what Tourette is. Often they think that it\u2019s a swearing disorder like they\u2019ve seen on TV or in movies. The thing is Tourette is not a swearing disorder.<\/p>\n
The involuntary utterance of obscene words or socially inappropriate and derogatory remarks is called coprolalia. While a small percentage of people with Tourette do experience coprolalia, the vast majority never do and coprolalia is not exclusive to Tourette, it may be a symptom of other neurologic disorders too.<\/p>\n
It hardly seems right to stereotype an entire disorder by one rare symptom that it shares with other conditions but that\u2019s how it is with Tourette. Any time I see Tourette mentioned somewhere it\u2019s as the swearing stereotype. I see it everywhere. A quick joke on a TV show. In movies characters with \u201cTourette\u201d (coprolalia) are used purely for comedic effect (Reality check: Real Tourette can be way funnier than just random swearing).<\/p>\n
In interviews, celebrities often refer to themselves swearing like they have Tourette. It even shows up in news programs. With popular media doing so much to reinforce the myth that Tourette is a swearing disorder it seems to be an impossible task trying to educate the average person on what Tourette really is.<\/p>\n
I do my best to educate everyone I can about Tourette; my friends in the Tourette community all do the same. We educate one by one and in small groups. When the myth is used on TV, it is seen by millions. Hard as we try educating one by one we just can\u2019t fight against a myth that gets so widely spread by popular media.<\/p>\n
As a group the Tourette community tends to be overly reactive when we see the “Tourette is swearing” bit. It may seem funny to someone who doesn\u2019t have Tourette, but as a person with Tourette, it only adds to the lack of understanding I experience. I encounter people who think I\u2019m lucky because they think it means I can swear freely.<\/p>\n
I\u2019ve had a few opportunities to speak with people who had mocked me and found that until they saw my tics start getting out of control they had no idea Tourette was a serious condition. I know parents who struggle with schools that focus on the potential that a child might swear in class while missing the point that the “bad behaviors”\u00a0the child is being punished for IS Tourette.<\/p>\n
So when we see it on TV or a celebrity\u2019s tweet, a joke with Tourette as the punch line, it\u2019s upsetting and we respond. We write feedback on network websites, we post on Facebook pages, we send tweets to actors and writers. We almost never receive a response and when we do it\u2019s usually just \u201csorry you were offended\u201d and nothing more. No changes have come from our efforts.<\/p>\n
The one time I personally have received a response was from a TV writer who often responds to me. He had re-tweeted someone else\u2019s picture of a t-shirt with \u201cWhat do we want? A cure for Tourette. When do we want it? (expletive).\u201d\u00a0To say I was upset at seeing this would be an understatement.<\/p>\n
Here is someone I respect, a writer on my favorite TV show, who\u2019s written some of my favorite episodes, who I follow on Twitter and most importantly seems to me to have a good understanding of right and wrong. Yet there he was making fun of MY condition. In my anger I responded with the first thing to come to mind which was to call him a jerk.<\/p>\n
I shouldn\u2019t have done that. I should have stopped and realized that maybe he didn\u2019t know that joke is offensive. He sees the condition portrayed as a swearing thing as often as I do maybe even more since TV is his business. Had I been thinking I should have first asked him if he realized that tweet was offensive. From the tweets I received in response to calling him a jerk he didn\u2019t know how offensive it was because he didn\u2019t know that Tourette isn\u2019t about swearing.<\/p>\n
Had I not reacted emotionally I would have first asked him if he realized that it was offensive to equate Tourette with swearing and used it as an opportunity to educate him about what Tourette really is. By calling him a jerk I put him on the defensive and less open to understanding why I was upset. I wish I had responded differently, I may have still called him a jerk but I wouldn\u2019t have started off with it. I already knew but this incident really highlighted that being reactive isn\u2019t accomplishing anything. If I want anything to change I need to start being proactive about it.<\/p>\n
If I want to make progress in getting people to see that Tourette isn\u2019t about swearing I need to be proactive. Instead of waiting for someone to be involved in reinforcing the myth and then trying to tell them why it upsets people with Tourette I need to work on educating them before they do it.<\/p>\n
With social media. maybe I have a chance at getting my message seen. I\u2019d like to ask everyone who reads this to pledge not to be part of continuing this myth that Tourette is a swearing disorder and then share this post. Share it with your friends and family and then if you follow a celebrity on Twitter or like them on Facebook send it to them too. Share it with actors and writers, anyone in a position to be heard by many. I\u2019m not optimistic enough to hope I can completely change how people see Tourette but maybe I can get my message seen by enough people to at least have fewer people confusing coprolalia for Tourette.<\/p>\n
I\u2019m not saying I want to see referring to Tourette as a taboo subject. In fact, I\u2019d like to see more mention of Tourette, make it more well-known so I don\u2019t always have to explain, I\u2019d just like to see it used as it really is. If random outbursts of swearing is your thing use it but call it what it is, coprolalia.<\/p>\n
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