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!