Help me cure the one thing I hate about having Tourette’s

Having Tourette’s has definitely made my life different. It’s hard to be “normal” when I’m always drawing people’s attention for the weird sounds I make or the odd behaviors that I just can’t 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. 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’t exactly accepting of my weirdness.

As many negatives as Tourette’s has brought to my life I’m not sure I’d ever want to get rid of it. With all the bad it has also brought good. I am a different person with Tourette’s, a better person, than I would have been without it. I know what it’s like to be different and I’m a more accepting person for it.  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’s to help them understand what their children are going through. I know what it’s like being bullied and having no one stand up for me… I also know what it’s 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’m sure that had I not been through the struggles of life with Tourette’s I would not be the same person.

If there were one thing I would change it would be people’s perception of the disorder. When I tell people that I have Tourette’s most have little to no understanding of what Tourette’s is. Often they think that it’s a swearing disorder like they’ve seen on TV or in movies. The thing is Tourette’s is not a swearing disorder. The involuntary utterance of obscene words or socially inappropriate and derogatory remarks is called coprolalia. While a small percentage of people with Tourette’s do experience coprolalia the vast majority never do and coprolalia is not exclusive to Tourette’s, it may be a symptom of other neurologic disorders too.

It hardly seems right to stereotype an entire disorder by one rare symptom that it shares with other conditions but that’s how it is with Tourette’s. Any time I see Tourette’s mentioned somewhere it’s as the swearing stereotype. I see it everywhere. A quick joke on a TV show. In movies characters with “Tourette’s” (coprolalia) are used purely for comedic effect (Reality check: Real Tourette’s can be way funnier than just random swearing). In interviews celebrities often refer to themselves swearing like they have Tourette’s. It even shows up in news programs. With popular media doing so much to reinforce the myth that Tourette’s is a swearing disorder it seems to be an impossible task trying to educate the average person on what Tourette’s really is. I do my best to educate everyone I can about Tourette’s; my friends in the Tourette’s 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’t fight against a myth that gets so widely spread by popular media.

As a group the Tourette’s community tends to be overly reactive when we see the ‘Tourette’s is swearing’ bit. It may seem funny to someone who doesn’t have Tourette’s but as a person with Tourette’s it only adds to the lack of understanding I experience. I encounter people who think I’m lucky because they think it means I can swear freely. I’ve 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’s 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’ the child is being punished for IS Tourette’s. So when we see it on TV or a celebrity’s tweet, a joke with Tourette’s as the punch line it’s 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’s usually just “sorry you were offended” and nothing more. No changes have come from our efforts.

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’s picture of a t-shirt with “What do we want? A cure for Tourette’s. When do we want it? (expletive).”  To say I was upset at seeing this would be an understatement. Here is someone I respect, a writer on my favorite TV show, who’s 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. I shouldn’t have done that. I should have stopped and realized that maybe he didn’t 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’t know how offensive it was because he didn’t know that Tourette’s isn’t about swearing. Had I not reacted emotionally I would have first asked him if he realized that it was offensive to equate Tourette’s with swearing and used it as an opportunity to educate him about what Tourette’s 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’t have started off with it. I already knew but this incident really highlighted that being reactive isn’t accomplishing anything. If I want anything to change I need to start being proactive about it.

If I want to make progress in getting people to see that Tourette’s isn’t 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’s I need to work on educating them before they do it. With social media maybe I have a chance at getting my message seen. I’d like to ask everyone who reads this to pledge not to be part of continuing this myth that Tourette’s 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’m not optimistic enough to hope I can completely change how people see Tourette’s but maybe I can get my message seen by enough people to at least have fewer people confusing coprolalia for Tourette’s.

I’m not saying I want to see referring to Tourette’s as a taboo subject. In fact I’d like to see more mention of Tourette’s, make it more well-known so I don’t always have to explain, I’d 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.

Ready to learn more about Tourette’s?

Web sites

http://tsa-usa.org/aMedical/whatists_cov.html Tourette Syndrome Association

http://tourette.ca/ The Tourette Syndrome Foundation of Canada

http://www.atrandom.ca/ An excellent Tourette’s documentary, you can choose how long you want to watch, it is different every time it’s viewed just like no two cases of Tourette’s are exactly alike

http://watch.thirteen.org/video/2135738235 “Different is the New Normal” a great hour long documentary

http://www.tourette.it/tourette.it/home.html for anyone who speaks Italian this site was recommended, I don’t speak it myself but I trust the person who sent it to me.

Books

“Against Medical Advice” by James Patterson and Hal Friedman

“Front of the Class: How Tourette Syndrome Made Me the Teacher I Never Had” by Brad Cohen with Lisa Wysocky

“Tic Talk: Living with Tourette Syndrome, a 9-year-old boy’s story in his own words” by Dylan Peters

“Twitch and Shout: A Touretter’s Tale” by Lowell Handler

Movies featuring Tourette’s

Phoebe in Wonderland

Front of the Class

The Tic Code, I love the way Gregory Hines’ character deals with the bully in this movie.

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About kateevans68

I'm me. What more do you need to know
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18 Responses to Help me cure the one thing I hate about having Tourette’s

  1. Well written Kate and very informative. I just hope as Sabrina and I move forward in life we can educate people about Spina Bifida as well as you have done with Tourette’s.

  2. PBMom says:

    HBO did a terrific documentary on it. Have you seen it?

  3. Katherine says:

    Reading this post was like reading a post from my blog :) I have the exact same thoughts regarding the way that the media handles Tourette’s and I too, have emailed many a TV network, to no avail.
    Just wanted to say I appreciate your struggle and I can 100% empathize with what you’re saying and experiencing.

  4. Thanks for an eye opening post. What bothers me most is that in a day and age of such easily available info, the burden to educate is still on you.

  5. Esther Law says:

    That’s one thing I can’t stand about the media and entertainment industry. They are so focused on making a buck, they can’t be bothered to research the truth and avoid spreading misconceptions. Thus, they profitably and effectively spread misinformation in all areas, whether it is medical, environmental, scientific, moral, literary, historical, or religious. Good luck to you, Kate. (But until we find some new, workable model for media and entertainment, I doubt any of us will make much progress. So far, I’m not terribly impressed with this new, modern, technological, Information Age. I think history will look back at this and call it the MISinformation Age.)

  6. Kate- Well-written and informative. A life altering disorder certainly, but one you refuse to give in to. I appreciate how open you are in speaking of it and the challenges you face, and the media’s lack of help in the matter. I’m bipolar and just 40 years ago, I would have been lobotomized and put in a mental hospital. There is still a stigma, but much less so, and the news media is more helpful than not, although fictional media is definitely not (the murderer/rapist/whatever is ALWAYS bipolar/schizophrenic). I offer this as encouragement that eventually Tourette’s, led by brave people like yourself, can break through the stereotypes and educate the world about the disorder whereby shifting their perspectives as well.
    Renee

  7. Eline says:

    As a psychology student, I was already aware of Tourettes. However, I had never read something like this from that perspective. I hope you’ll get your message across as widely as possible!

  8. hi Kate. You have such a wonderful, informative article. Thank you for sharing your story. :-) My line of work is in the bio/med science but I had a better understanding of Tourettes syndrome when i had a best friend at work who has this. People were always making fun of him and one time, he got into a major fight at work when someone bullied him. He is a brilliant employee, but people don’t respect him because they don’t understand why he makes those uncontrollable facial movements and sounds. How people treated him made him anti-social and overly sensitive. But so far, after working in a new place, he became more lighthearted about his situation. I think it’s best to simply hang out with people who are kind and understand. It makes the problem easier to bear on a daily basis. :-) Second, let’s believe that there is always a solution to any problem … maybe not a medicine yet, but perhaps natural remedies discovered by nerds who did their homework years ago. :-) What I know so far is that food rich in niacin (like avocados and wheat germ) has the ability to stop the tics. Also, a flower called evening primrose (the flower extracts produces oil which is sold in gel capsule form) alleviates the tremors. I’m allergic to paracetamol and aspirin (and anesthesia too) … so when I have pain like dysmenorrhea or migraine headaches, I can only take evening primrose. Same thing with tremors caused by Tourettes, evening primrose is a natural remedy. Very safe to take since it has no allergic side-effects. (Lab tested on a “marcelle” … acc. to my chemist friends who use me as a lab mouse for allergy testing. lol!) Basically, it’s a fast-acting, natural pain killer. Bonus: Evening primrose is a girl’s best friend if one wants beautiful, flawless skin. Evening primrose is able to fix any problem related to the nervous system and hormonal imbalance. I’ve read that for Tourettes, the dosage is two 500 mg tablets x3 a day, but please consult your medical doctor first re: the dosage. :-) Lastly, tea will save the day. When one is relaxed and free of stress, the symptoms of Tourettes are controlled. Drinking green tea or eucalyptus tea calms the nerves … thus prevents attacks from happening. What I know about herbs is that eucalyptus or green tea are energy-giving plants (as well as calming the nervous system), so it’s best to drink at daytime. At nighttime, chamomile tea will help you sleep better with its relaxing effect, and controls the tremors too. As a general guide also, medicals books say that a balanced diet with niacin, vitamin B, vitamin C, vitamin E, zinc, magnesium, and selenium controls the symptoms of Tourettes. So it’s advisable to focus on these vitamins and minerals in one’s daily diet. I hope the natural remedies I’ve mentioned will somehow help you. Wishing you better and happy days ahead. (^_~) take care. God bless you.

  9. David Williamson says:

    I have had this condition for most of my life. It would come and go but since 1988 it stuck around and the types of tics change over time. I get very down at times and am finding myself trying to avoid crowds. Learner this week my daughter may have it. Hate this stuff.

  10. mommasylvia says:

    hello. I found you on the Wednesday link up list. My heart goes out to you. My daughter has been different since 2000, due to brain cancer, autism and seizures. I can identify with you and understand a lot of what you are saying but from a parent’s perspective. Since Betty Boop got sick, I have purposed to be kind, compassionate, and non-judgemental to others. We never know what a person may be experiencing or suffering often in silence. I’m not perfect at it yet, but I never want to deliberately hurt anyone. I am following you now and hope you will follow me back. I am # 1 on the list!

    • David Williamson says:

      Thanks for the reply. It seems like a lot of people here have come to terms regarding ts. I haven’t gotten to that point I guess. Even after all these years. I agree with you about how it changes you. More compassionate, etc.

  11. realmojo68 says:

    Thanks for linking up with the Blog Hop, Kate. I really hope this post garners so much attention! Job well done.

  12. Claire says:

    I have this in a really minor way and I don’t really suffer but thank you for starting this thread – I hope it does raise awareness – well done!

  13. Good morning. Thank you for such a well written, thought-provoking essay. One of your friends sent the link to me because I had included a line about Tourette’s in my latest Bibliophile Mystery novel, Peril in Paperback. This morning, I posted an apology on my Facebook page for referring to Tourette’s as a swearing disorder, with a link to your blog, and a vow to never make that mistake again. I wanted to let you know that your efforts to raise awareness are working.

  14. Reblogged this on Exceptional Delaware and commented:
    I pray my son has this kind of understanding when he is older. He’s going through a very rough time now.

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