10 questions I have found or that people ask me about Tourettes

1.What do you find is one of the biggest challenges of living with Tourettes?

I find that one of the hardest things is accepting myself and accepting that even though I live with Tourette's my tics do not define me as a person and do not reflect on who I am at all. I find this difficult because a lot of the time I have trouble separating myself from my tics and thinking of them as a separate entity from myself. I don’t do my tics on purpose and although sometimes I can hold them back for short periods of time a lot of the time I really have no control over them. I find it a challenge to think of TS as a little brother who tags along beside me and is annoying and frustrating but should not be confused with who I am. A lot of the time I feel guilty or ashamed about ticcing when I know I shouldn’t because I can't help it.

2. What’s been your best response to a negative comment?

I really don't get any highly negative comments. I do get a lot of comments in general though. MANY throughout the day. "What was that?" "Was that a sneeze?" "Is there a bird in here" "Why are you looking over there so much?" "Was that you or your computer?". I always casually explain that I have Tourette's and I'm sorry but don’t do these things on purpose and the person just usually responds with "Don't worry about it, your fine" or "Oh, really?". I had plenty of negative comments about my tics as a child but I can't remember what I said back to these people. Knowing myself as a kid, I probably didn’t say anything at all.

3. What advice would you give to a young person with Tourettes who’s approaching adolescence?

I'd tell them that their tics are probably going to get worse as an adolescent but not to let the tics stop them from being a regular teenager. Don't be ashamed to let people know that you have Tourette's. It makes things a lot easier if you tell others.

4. If you could turn off your motor tics or your vocal tics, but not both, which would you choose?

This is a VERY tricky question. My vocal tics are loud and draw attention to me even when I would much rather not have attention in this way at all, but my motor tics hurt a lot of the time. Overall I would probably chose to get rid of my vocal tics because they really seem to catch people's attention and elicit the all too familiar "What was that?" responce.

5. Do you think your tics are influenced by or affect your personality?

My tics are not influenced by my personality at all. They are all very random and usually things I would never chose to do if I had the choice. If in any way I think sometimes they affect my personality positively. Since I was diagnosed my friends have pointed out that I am actually more confident.

6. What one thing do you think would make living with Tourettes easier?

I think it would have been easier if I was diagnosed at a younger age.  This would have made it much easier for my parents to accept it I think and would have made me even more used to telling others about it than I am now.

7. Do you have Tourettes in your dreams?

I do have Tourettes in some of my dreams but in other dreams I am tic free. I acctually have a fair share of Tourette/OCD dreams that are mainly centered around one of the two.

8. How would you describe how your tics feel?

This would depend on the type of tic for me. Vocal tics feel like a pressure building in my throat and right before I tic I feel the pressure surging up like energy. Sometimes I can feel this pressure surging throughout my entire upper torso before I tic. Motor tics feel like a kind of pressure building as well but its more confined to the area that the tic is located. Most of the time I feel like I am either a coke can that someone has shaken much to hard of like I'm a 40 Watt lightblub plugged into a 1000 Watt plug.

9. What do you think the biggest misconception about Tourettes is?

I would say that the biggest misconception is that all people with TS swear. All people with TS do not have swearing tics! Only about 5-10% of people with TS have swearing tics and I am not one of them. I have met A LOT of people with Tourette's and I've only met one or two who actually swear as a tic.

10. Tourette's is a genetic disorder. Are you the only one in your family that has it? 

No, I am not the only person in my family who has TS. In fact a lot of people in my family have Tourettes or OCD or both. My dad has vocal tics (most likely undiagnosed Tourettes), OCD, and ADD. My brother has tics that have not yet been diagnosed as Tourettes because he doesn’t really want to talk about it. And my first cousin on my dad's side has been diagnosed with both Tourettes and OCD.  There is clearly a TS/OCD gene in my family. 

A New Power

So I know i've already posted for today but I had some thoughts tonight when I met with my math tutor, Mr. Sits on Towel, and I just had to write a post about it before I forgot what my thoughts were. I've been seeing Mr. Sits on Towel for math tutoring for quite a while now but usually I'm so focused on the math that I don't tic all that much. Tonight though I saw him later than usual, 8:00, and I drove myself to the book store where we were meeting. This made me extra stressed so my eye rolling tic was really acting up. My eyes would just not listen tonight as my tics have been quite bad today so my eyes continued to roll as he explained some math to me. He stopped me in the middle of the lesson and asked "Are you looking at something over there?" At first I was confused but when I realized he was talking about my eye tic I calmly said "Oh sorry, it's a tic. I really don't mean to do it". I probably would have gone into the TS explanation but Country Club Mom was sitting at a table near by and I had recognized her as one of my mom's friends earlier in the session. Also I think he got the idea because most people assume I mean some form of Tourettes when I bring up tics. Mr. Sits on Towel looked unsettled and went back to teaching the lesson. Later in the session he brought it back up though insisting that he had to explain himself because he felt really embarrassed about bringing it up and asking me about the eye rolling. He said he was worried that because I ticced right before he made a comment he thought I might have been rolling my eyes at him and he was confused because I had never been sarcastic or rude to him before. He said he was really sorry for mentioning it at all but I quickly reassured him that it was no big deal at all and that people ask me about my tics all the time and I don't mind explaining. I also said I was sorry for rolling my eyes and again that I really wasn't doing it on purpose. From there he told me not to apologize and that he was the one who needed to apologize for bringing it up. Is it wrong to feel a sense of satisfaction here? I think no. I have never had the ability to make others feel embarrassed or like they said the wrong thing to me in general much less when commenting on my tics. All my life I have been the one who was embarrassed when people comment or make fun of my tics as a younger child and now when people comment I politely explain that I can't help it or don't do it on purpose and that I have Tourettes. They are the ones who feel bad. Not me anymore. It's like a new power. I am the one who has the upper hand, and tonight it felt really good to be the one to reassure my tutor that he had not said the wrong thing when he was feeling rather embarrassed. I assured him that his embarrassment was unnecessary but somehow I was satisfied with the fact that he felt as if he should be embarrassed. I am not the one who is doing wrong by ticcing; other people are doing wrong by judging and they know it. :)

Copropraxia is not my friend

When people think of Tourette's Syndrome a lot of them think of someone swearing uncontrollably, however very few people with Tourette's actually suffer from uncontrollable swearing which is called Coprolallia. I am always able to say "I do have Tourette's, but I don't have Coprolallia" but unfortunatly I have never been able to say "I don't have Copropraxia". For those of you who don't know, Copropraxia is a tic that involves inappropriate gestures or inappropriate touching and it's something that i've dealt with since I was a kid. One of my first tics as a child was grabbing at my crotch area and it was a tic that I truly hated. Even though I sniffled, made slurping sounds with my mouth, and twitched my eyebrows, none of these caused me as many problems as the Copropraxia did. The other kids made up stories that I had grown up in a trailer park and no one ever told me not to grab at my crotch. I absolutely hated that I did this, but I couldn't stop myself no matter how hard I tried. I no longer have this tic, but Copropraxia just doesn't seem to want to go away. Right now my two tics that would classify as Copropraxia are making my fingers point like guns and putting up my middle finger. So far i've been able to keep these two tics under raps for the most part by sitting on my hands, clenching my hands, and holding my hands under the table but today my hands just didn't want to cooperate. I'm pretty sure some freshman thought I was giving him the middle finger in the hallway and I was putting both of my middle fingers out the whole ride home with Freshman Buddy, my car pool from rowing. The middle finger tic now seems to be combined with a body and arm jerk as well but Freshman Buddy seemed unfazed as I jerked and stuck out my middle fingers rapidly. Of course I would never choose to stick my middle fingers out if I had a choice in the matter which is why I really hate Copropraxia. I may offend people and I really have no control. Freshman Buddy knows that I have Tourette's so she wasn't offended in the slightest which is really great. At rowing today I shared with her the story of how I don't do well on long bus rides thanks to full body tics and on planes people have confused my tics for an epileptic seizure. She laughed along with me as I told her this and we were both in good spirits about the whole thing even with my middle finger tic. Hopefully Freshman Buddy will sit with my on the ride to the Regatta. She doesn't seem to mind my tics and sitting with her would give me a certain amount of comfort as well as allowing me to avoid giving the Tourette's explanation to yet another member of my rowing team. Rowers are very curious, and although I really don't mind explaining, sitting next to someone who is not yet fully comfortable around me when I tic might not be the best thing for me or the other person on the 7 hour bus ride when my tics will probably be rather forceful and loud.

Note from November 2011: I now have completely gotten rid of of the middle finger tic thanks to a bloggers comment on this blog. It took lots of time and practice but instead of doing the middle finger tic, I now just grab at my middle finger from time to time so that its not longer the inappropriate gesture.  Thank goodness that's gone! It was really no fun at all. Still do the guns with my fingers every now and then but they are not as frequent.

"They'll know soon"

Today is Wednesday, my first post in my hopefully long line of daily posts, and the day of my weekly appointment with Ginger Therapist. I recently switched therapists because I just couldn't stand my last one. Ginger Therapist sometimes really cracks me up with some of the things she says. It's like you just never know what's going to come out of her mouth next. Today I mentioned that I was nervous about this year's upcoming Regatta (race) which is in two weeks. I'm a coxswain for a rowing club and the Regattas are a BIG deal. There are a lot of things that make me nervous about the Regatta especially with my OCD but one of the things that's making me the most nervous is the seven hour bus ride to Ohio. As you can imagine 7 hours in a packed bus is not the ideal place for someone with Tourette's. I told Ginger Therapist that I was nervous about the bus ride  because "well you know....I make noises" and her response was "Well don't they already know about that?" and when I told her that not all of the girls on the team did know she laughed a bit and said "Well, They'll know soon". At first I thought that this might be an odd thing for a therapist to say to a patient but then I looked back at my after lunch break earlier today when I was hanging out with Pessimistic Friend and chirping, squeaking loudly, and making my forceful "heh" noise. At this point I thought to myself "Yes, this is true. They'll know soon."

One more note before I end today's post: I think I'm having more fun making up funny nick names for everyone than actually writing these, lol. I will try to avoid using lol and haha in my posts. I consider them to be rather useless and annoying so maybe this blog will help me break that habit of using them :)

A new goal! A post every day!

Hello bloggers and internet roamers. If you have read my other posts on this blog you know my story. So I can't say there's really too much more of my past to tell. I take things day by day now so it's my new goal to bring you all in to my every day life of living with TS and OCD. From now on I will try to post something every day (even if it might just be a few sentences). Most of it will probably be about either TS, OCD, or Anxiety. I may not be able to really post every day (but who knows, I may surprise myself). This is a welcome post. Welcome to my life with all its ups, downs, and sideways moments :P

Opening up about Tourette's

Hi bloggers! Sorry that I haven’t been able to upload the second half of my story really, but I have been so busy with college applications. I’m applying early action to Princeton which is quite a task with all the supplemental essays and short answers that are required! I have plenty of other apps as well that still need to be finished and almost every one of them has their own supplement, gosh! Anyway here is the rest of my story, I got distracted from my work and decided to write it up.

I continued to hide from my diagnosis for the rest of the school year and in summer after I was diagnosed with Tourette's Syndrome and I was just so fed up with hiding. I was going to be attending the a writer’s studio for creative writing at a prominent university and I thought it might be a good time to see what it would really be like to open up about my TS for the first time.

 My mom and I had a long discussion and I feel like it is much too long to recap but basically I told her my true feelings about having to hide the fact that I have TS in a very sincere way which ended with her crying because she didn’t realize what it was really like for me to hide from the diagnosis. She gave me full permission to open up about it over the summer and that’s exactly what I did at my program.

I told my roommate, most of my friends at the program, and even the students in my poetry class and every single one of them and I mean EVERY SINGLE ONE OF THEM accepted me and liked me and understood that I couldn’t control my tics but that didn’t change who I am one bit! The fact that I have Tourette’s didn’t affect their perception of who I was as a person and being open with them was one of the best feelings in the world.

At the program, I was myself, fully and entirely. I was the girl who writes poetry with a keen perception of the word around me, who is intelligent and intellectual and fun to be around, and who has Tourette’s Syndrome but doesn’t let it control me.

 At this point I knew I was never going back to the way things used to be. I made that promise to myself. When I came back from the program I told my mom all about it and after yet another long discussion my mom agreed that I could do what I wanted. I could tell my friends and my cousin (who also has TS)!

I felt so free and I knew I could be myself now. I could not believe how supportive my friends were when I told them that I have Tourette’s . I explained to them that I don’t have an extremely severe case by any means and that I don’t swear or anything like that and that I’m not any different than I used to be really. My friends are always there to back me up now. They never treated me any differently when I told them about my Tourette’s. They know I’m still the same person they have been friends with since middle school. They know the full me.

Sometimes I get the feeling that they already had put two and two together with a little help from the internet because none of them seemed too surprised when I told my full story.  My friends have been an incredible support. They tell me to never let the stereotypes of TS get in my way and prevent me from telling others the truth about Tourette’s, and to never let these stereotypes it affect what comes out of my soul. They tell me not to be insecure or self-conscious about my tics around them because that’s what friends are for and they always have little ways of reminding me that I’m doing great with this whole situation. They’re always there to have my back and they are what keeps me positive even when my tics get bad and noticeable. They are proud of me when I speak up about Tourette’s and would be there for me if anyone ever gave me trouble about it, but no one ever has so far.

Everyone I tell understands pretty much immediately and no one ever says anything to make me think otherwise. Everyone who I have come across has accepted me as soon as I tell them I have Tourette’s and most of the time they don’t even give it a second thought.  A lot of people now know that I have Tourette’s thanks to some of my more recent (and loud) vocal tics that my friends joke about by saying my noises are cute and sound like a pokemon which really puts me at ease.

Today I’m taking it day by day. My friends are there for me when things get tough and luckily I rarely have to feel embarrassed or self-conscious when I tic. I am also now involved with the TSA (Tourette’s Syndrome Association) chapter and attend the monthly meetings to help out with the younger kids while the parents are meeting.  I’ve met a lot of great kids and teens at the meetings and I really have been enjoying getting a chance to be a part of the TSA. Getting ready to go to college though is pretty nerve racking considering I will have to tell a whole new group of people about my Tourette’s and I will have to hope that they will be as awesome  and supportive about it as my friends have been!

Marc Elliot is my hero!

Today I met Marc Elliot when he came to my school to speak. I absolutely loved his speech! He was so funny and I found myself laughing more than I ever have in our school assembly hall. For those of you who don't know, Marc Elliot travels around the US hopeing to teach tolerance and acceptance by speaking openly about his own personal struggles in life: Hertzsprung Disease and Tourette's Syndrome. His speech was so inspirational and I cannot express how much I enjoyed it. I really think that anyone can find meaning in his speech, whether or not they have Tourette's. After the speech I had to opportunity to skip a bit of math class and meet Marc! A lot of other students came to meet him as well and my friends Tie Dye Socks and Steam Punk accompanied me for moral support and to meet him as well (they're really the best). I had pretty much no intention of doing anything more than telling him my name, shaking his hand, and saying that I enjoyed his speech but in the spur of the moment spoke up, told him that I too had Tourette's, and that it was so cool to hear him speak about it. I couldn't really believe that I did this, because even though a majority of my friends know that I have Tourette's there were many people in the room who didn't even know me. I was so nervous that I was practically shaking but when I told Marc that I had Tourette's too, his face lit up and he immediately said that he had to give me a hug. He came over and gave me a hug with a big smile on his face , asked me how I was getting along in high school, and said he hoped that his speech helped. Before I left to go back to class, he shook my hand once again and told me that he really respected me for speaking up in front of the group. I couldn't believe it, Marc Elliot, a guy who has been dealing will Tourette's his whole life and went around the country speaking about his challenges told me that he respected me. I cannot express how much this made my day. I will be relishing in that moment for quite some time. Marc Elliot was truly my hero today because he gave me the confidence to speak up about my Tourettes openly for pretty much the first time. I felt like I was part of some special club, like there was something that really connected me to Marc Elliot and all those others with Tourettes. I felt so happy and I have been smiling all day. Thank you, Thank you, Thank you Mark Elliot. I feel more confident about having Tourettes than I ever have and I feel so proud of myself for opening up like that. Tie Dye Socks told me it will get easier and easier every time I talk about it and tell people my story and I look back at earlier today as that beginning to things getting easier.