It’s time to discuss something I’ve never discussed on here before. It’s about a condition I’m sure you’ve all heard of called Tourette Syndrome also shortened as Tourette’s or TS.
When I was roughly 8-years old, I was diagnosed with this tic disorder that seemed to overtake my daily life.
If you were to meet me today (some of you have), you wouldn’t notice I had anything. In fact, when I tell people I have Tourette’s, a typical response is, “No, you don’t, why aren’t you swearing uncontrollably?” Well, folks and the media, I hate to break it to you but only less than 15% of those diagnosed with this condition show tics that involve cursing. It breaks my heart when I see references in media portraying this disorder as something that it’s not.
Before my diagnosis, I remember thinking in my little 7-year old head, “Why do I have these urges? Why aren’t other people doing the same things that I am doing?” It wasn’t until a random afternoon that my dad and I took a walk and he told me I have something called Tourette’s. The moment he told me that, I felt a sense of relief. There was a name for my weird habits which my father called “tics.”
I also had Obsessive Compulsive Disorder which is commonly comorbid with Tourette’s (I was never formally diagnosed with OCD but I know enough about it that I know I have it). Examples of my symptoms of both Tourette’s and OCD are as follows:
- Everything was in 4′s. Before I went to bed every night, I had to touch my drawers four times each. I had to touch them so perfectly and if they weren’t perfect, I would have to do it 16 times, then 32, and so forth. It took up my mind and I felt that if I didn’t do those rituals, something bad would happen to me.
- I had eye-blinking tics (very common) and still have them today – although, I’m good at hiding them.
- I sniffed out with my nose constantly. This was a big one and allergies seemed to act it up. This was so loud during class that my teachers would ask if I was okay and get mad at me for constantly disrupting the flow of class. Even though I was diagnosed, not all of my teachers truly accepted that diagnosis.
- I would do vocal grunting which is hard to explain on this blog. Again, very disruptive and not something you want to show to your peers.
- Since 4 was my lucky number, I would frequently have to repeat things 4-times. “Hi, how are you Julie?” someone would ask. My response would be, “I’m fine, fine, fine, fine…” Again, all the “fine”‘s had to sound perfectly to me or else I’d have to repeat them 16 times.
- I would have more complex motor tics that would incorporate jerking my arms, my neck or head, or my legs. This would happen randomly.
Those are just examples of tics I’ve had to deal with in my day. Now that I’m an adult, I’ve learned to control a lot of my tics and the urge to tic has dramatically been reduced. Whenever I feel a tic coming on, I analyze my social situation to see if it’s appropriate or if I can disguise it. If I’m alone, I let the tic out and if I’m in public, I either let it out or turn away for a second. For many adults the same thing happens. For some, the tics can get worse or stay the same intensity.
When I’m running, my tics have the tendency to become more intense. Right now, for example, I have a shoulder tic in which I jerk my left shoulder forward. Since I’m training for a half marathon (ya!), this whole tic business just plain sucks. For example, last weekend, I was completing my 8-mile run with Julianne (who until that day didn’t know I had Tourette’s). As most of you know, I took two weeks off of running because of shin splints. The last couple miles of that run were really difficult because I hadn’t run that much. My anxiety heightened and all I could think about was my shoulder tic and finishing the run.
Soon, I stopped and told Julianne to run ahead. Being the awesome-supportive-friend she is, she tried to stick by me until I told her again to go ahead. Really, I needed to be alone to let my tic out without the anxiety of having another person present. When we got back to the car, I quickly explained about my Tourette’s and it felt good to tell her.
Tics come and go, my friends but I’m a lucky one. There are people who battle with this condition much more intensively than I do but still strive through. I’m lucky that my tics have reduced and I can go through life without always having to explain it.
It’s funny, every time a tic bothers my running, I think to myself, “I need to blog about this!” but I’m always scared to. I’ve always considered running a full marathon and part of the reason I’m holding back is because of these damn tics (especially when I’m running). They take a lot out of me and I’m not sure how much energy it would take me to run 26.2 than the typical person who can actually focus on just their running.
I’m sure many of you saw from my tweets last week, but I attended the National Tourette Syndrome Association conference in DC and it was a life-changing experience! I met so many wonderful people and made friends for life. Soon, I will post a recap from my week. Here’s one of my favorite pictures from the week though:
Remember the American Idol “Tourette” guy, Dave Pittman? Yep, he was there! It was funny because I don’t watch American Idol so I didn’t see him as a “celebrity” if that makes sense. To hear more about his story, check out this YouTube video:
Anyways, if you have any questions please comment or email me!
xo
Hi! My name is Julie. I am passionate about being happy and healthy, all while doing Bikram yoga and wearing mascara. Email me: wearingmascara {at} gmail {dot} com
{ 38 comments… read them below or add one }
Bless your heart for opening up! I hope that it helps to talk about it… it always does for me when I’m struggling with something! I love hearing about your success and it sounds like you have some amazing people in your world!
You are an inspiration my blog friend! It takes courage to open up like you just did. I am so proud of you!
.-= Silvia´s last blog ..Size 6 =-.
Thanks so much for this post, really! You should be proud with how you are able to handle this and personally, it was interesting for me to read. I definitely would have always thought of the “media” form of Tourette’s and not all the other things that anyone can have. Thanks for the education about this part of your life.
wow, I had NO idea. It’s really cool that you’re able to open up about this. I’m so proud of you. Way to go on bringing more awareness to this!
.-= Maggie´s last blog ..Letters to things =-.
Good for you for talking about this! You’ll deserve MORE than a finisher’s medal for running 26.2 miles with more than sore hip flexors and shin splints to worry about. So glad you shared and shed some light on Tourette’s for those of us who don’t know much about it. We’re cheering you on!
.-= Anne´s last blog ..Baby (Bangs) Blues =-.
Thank you so SO much for this post.
My friend, you are SO inspiring. And amazing.
.-= ClassyFabSarah´s last blog ..Does Crap Like This Happen to Other People?? =-.
Thank you so much for the post. You are amazing.
Tourette’s is definitely something that is so misunderstood- it is great to hear someone really getting out there and talking about it- especially someone so fabulous such as you!
.-= Jaime´s last blog ..Poof Zucchini Pie =-.
This is such a brave post!! I agree that it is something that is misunderstood and I’m glad that you explained it more. I’m so proud of you honey!!! <3 you BIG TIME!
.-= Kirby @ Good Gals Inc´s last blog ..Because I like for people to laugh at me.., =-.
WOW girl, I had no clue!! I am so proud of you for opening up and sharing your story with us. I had noticed your tweets on the subject, I think it’s so wonderful that you’re bringing awareness to a very misunderstood cause.
.-= Shannon´s last blog ..So Long, Acrylics! =-.
What a great post! I’m so proud of you for going after life and grabbing on to it, without any fear. So awesome! (ps – I blow my nose out constantly too. It’s so weird and I hate it. But whatever!)
.-= Amy´s last blog ..Role Reversal =-.
Great candid and honest post! Very proud of you! You look amazing in that picture
What a brave post! I admire you so much for being so open and honest. I have some sensory issues and OCD tendencies, so does my youngest daughter. It’s often hard to “hide”, but I’ve found coping mechanisms through the years like you have. I applaud you for sharing your story!
I have a friend who has epilepsy and whenever I or anyone asks what they can do, if they can help somehow, he always says one of the best things you can do for him is to talk about it. As you know, such stigmas surround certain syndromes and disorders in our society, and the more we talk about them and educate people the easier it will be for those who live with them. I admire you for this post, because you are doing just that.
And for what it’s worth, I believe you can train for a full marathon in the same way you’re training for the half. By no means am I simplifying what your challenges are, but most of any race occurs in the mental and physical training beforehand, and you are definitely excelling there.
You are an amazing young lady! Just amazing. I am sure your story can help so many people who may be dealing with different things in their lives. xoxo
.-= Preppy 101´s last blog ..Dixie =-.
Kudos to you for being able to write about this! I know how hard it is to open up about stuff like this. I’m so glad you enjoyed the conference. And I think you can do anything you put your mind to, including a marathon!
.-= Julianne´s last blog ..And the Tapering Begins! =-.
Great post!
I’m a checker. Getting better, but I HAVE to check at least 2 times to make sure my curling iron and clothes iron are unplugged every morning even if I KNOW that I unplugged them. I can’t leave the house without doing so. Sometimes I’ll test myself and get out to my car, but then I’m so bothered by it, I have to go back and check. Sometimes I can unplug it then repeat outloud 3x “I unplugged it, I unplugged it, I unplugged it” and then not have to check it, but even then I’m slightly worried when I walk out the door. Not so bad to go back and check, but def always a tinge of worry. It’s gotten better since HS, but every morning I still need to check. ugh. And it has to be a certain way I check too. Flick on the light in the hall, stare at it for a full 3 “mississippi” seconds and then I’m good to go.
.-= Amy´s last blog .. =-.
I’m so happy you blogged about this! You should never feel embarrassed to admit that you have Tourette’s – & especially not on your own site. I did a project on Tourette’s when I was in high school & really feel a fondness now toward people who deal with it. One of the first friends I made in DC has mild Tourette’s & has motor tics in her eyes & arms, primarily. I’m so happy to see two beautiful, successful, confident women like the two of you opening up about Tourette’s & battling misconceptions about it.
.-= Suburban Sweetheart´s last blog ..I Can Make It On My Own, But My Heart Is In Ohio =-.
Thanks for sharing this! I barely knew anything about Tourette’s syndrome so this was really informative and helpful for me!
.-= Becky´s last blog ..Three Cups of Tea =-.
I always felt better when I talked about something on my blog that had been on my mind for a while. In all my years of reading blogs, this is the first post I’ve read about someone with Tourette’s — and I think that’s awesome. You’re normal, beautiful, smart, and healthy. Thank you for telling your story.
.-= Zandria´s last blog ..I Cut My Hair. I Needed a Change. =-.
Not only did you open up (which I think is awesome) you also educated some people which I think is just as important! I applaud your bravery and your support. I think it’s extremely important for people to speak out and take action. I get extremely frustrated with those who aren’t educated and do not care to become educated; they just seem to “soak up” what entertainment gives them, which is hardly ever correct.
Thanks for sharing! I know it was a bold step, but I do NOT think it was one you will regret! Can’t wait to hear about your week in DC!
It had to have taken alot of courage and strength to write this post – go you! You are really inspiring and I have to thank you for opening up. Maybe I will run into you at the marathon? I don’t run, but I’m going to support my other bloggy friends!
I admire you for sharing this with us. Probably feels like a weight has been lifted from your bloggy shoulders, eh? Good luck with your marathon! People who can run like that amaze me. xo
Your are so brave, Julie! I was going to tweet you last night, but I’m private and you don’t follow. So, you wouldn’t have seen it. But, I think it takes a VERY STRONG person to be able to discuss something so private publicly. I applaud you. It’s people like you who bring more awareness to a disorder than what the social media portrays. Honestly, the only thing I knew about Tourette’s was what I’ve seen in movies. I just thought it was that way. I’m glad to know now that Tourette’s has a much broader span than what I knew before. I hope to score a teaching job soon, and this is a life lesson that will help me I’m sure:) Kudos!!!
.-= SouthernBelleJM´s last blog ..what happened to the good samaritan?? =-.
You are such an amazing Woman Julie! It took courage to share this with everyone! I think you are an inspiration to a whole lot of people in so many ways and this adds to that long list! I am Proud of you!
Thanks for sharing this! It’s nice to read someone’s experience as opposed to just facts. I think when there is something “different” about us, our first instinct is to try to hide it, so what you did here in this post was very brave. Thanks again!
Dude, you are awesome. This post is awesome. Thank you.
Also, have you read Motherless Brooklyn? The protagonist has TS, and I thought the author did a pretty good job portraying it more true-to-life than they do in movies and such. But then, what do I know, right? So I’d be curious what you think/thought of it.
.-= Kristan´s last blog ..Scenes from a weekend =-.
You are my inspiration Julie!! You really truly are. This morning when I was telling Brian how I didn’t want to run but that you run even with your tics bothering you it pushed me harder. I love you tons and I appreciate you posting this!!! XOXO
P.S. Is it weird that I’m glad someone else has OCD that hasn’t been actually diagnosed by a doctor with it? Turning on and off lights or compulsively moving things used to freak people out but now I just say I have OCD and they understand.
.-= Gwen´s last blog ..New Look & A Weekend Update =-.
Great post and so great of you to share this with us!!
This is amazing, Julie. It was awesome reading this, and of course I had no idea. This is mostly because I am so behind on blogs that it’s ridiculous. But I’m still so proud of you for coming out and admitting this. You’re an inspiration, lady!
.-= Katie´s last blog ..How You Might Get Arrested If You Don’t Judge People =-.
Thank you so very, very much for posting this. I really can’t even thank you enough. Mr. Lipstick has Tourette’s and has had similar experiences as you. Thank you for sharing, educating, and visiting Washington DC!
I just wanted to say, it took a lot of guts to blog thbis. You should be proud of yourself <3
I bet you feel a whole lot better for having opened up about that and I am so glad you have. People need to learn to respect the difference. Diversity is what makes us so amazing
)
x
Hey.
I have tourettes, but i haven’t really told anyone except my closest friends. I don’t really have all that many tics, but they some and go. Sometimes it’s blinking, eyerolling, weird facial expressions, you get the idea. But it’s not so much that people notice. Or at least they don’t know what it is. When they ask, i just blame allergy. I really want to just.. Come clean and tell everyone, but i’m kinda scared, and i’m not sure how people will react. So my question is: Should i just keep it secret, like i do now, which works out, or should i tell everybody, and hope for the best?
Thanks:)
Thanks for opening up to us! I know this must have been a hard post to write. And I am SO proud of you
.-= Sana´s last blog ..Festive Dates =-.
I happen to have Tourettes to, I had it when i was about the age of 5. People may not understand tics but it is when my muscle crumple up together and others where with my eyes even If i sing i still make noises. Ialso too a medicine for about 5 years non-stop. Still, I do have Tourette’s while i am singing. 1 more theing, even if people tries to help it, i mean im almost over with it,but on the inside like near you’r heart it tightens up and it finally comes out. So really i can’t and the other people can’t control it either
thank you for opening up and sharing this! <3 i feel like i learn so much from just reading the experiences of people through their blogs.
suki´s last [type] ..Six Months Six Dresses- Dress Four Five
Wow I had no idea. I would never have guessed when I met you. Thank you for sharing such a personal part of yourself.
Wow, what a brave post. Thanks for sharing and shedding some light on a condition that is very misunderstood. It’s great that you have such control over it!
Now, don’t let your tics stop you from running a full marathon! I’m sure nobody will notice
I’m sure most of us develop tics and quirks of our own running through muscle cramps, aches and pains!
merrymishaps´s last [type] ..running in costume
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