Friday, July 25, 2014

Camp Twitch and Shout Post #4: How Camp Has Helped My Parents Accept My TS

As those of you who have been following my blog know, when I was diagnosed with TS, my parents were in complete and total denial. They were in the room with me when the neurologist told me that I have Tourette's but they didn't believe it. They didn't believe that their daughter could have something like this. It was other people and other people's children who were diagnosed with things like this, not them. 

So their reaction to tell me not tell anyone about this diagnosis, that the diagnosis was probably false and the reason I had tics was probably because of my OCD and that once I went on OCD medication my tics would go away. They choose to ignore the fact that the head of the movement disorders clinic at a prominent university was convinced after talking with me for 15 minutes that I have Tourette's, the fact that my first cousin was diagnosed with Tourette's as well (unknown to me) about three months before, the fact that pretty much everyone on my dad's side of the family has OCD, and the fact that the Tourette's diagnosis explained pretty much everything that had been going on with me since I was three years old. They continued to ignore these facts until I came back from my first year as a counselor at camp twitch and shout. 

Camp is the thing that really made the difference with my parents accepting that I have TS. Camp gave me so much more confidence about talking about TS that I just started talking about my TS around my parents a lot more when I came back from camp. I thought my parents would never accept the fact that I have TS, but now coming back from my 2nd year as a counselor both my parents accept and beleive that I have it, are so supportive and proud of my involvement with camp and the general TS community (i'm on the board of the TSA and do research on TS as an undergrad assistant), and my mom and I frequently talk about it using the actual word Tourette's. 

At first my mom wasn't even able to say the word, and now she gives me research suggestions, uses the word freely and openly with me, and last night we watched the SBS dateline documentary about camp together and she said she really enjoyed watching it.

I think what really made the difference is camp, talking about camp with my parents, and reaching a point where I felt I no longer had to prove to them that I had TS. I knew I had TS and no one else needed to believe that besides myself and my neurologist for it to be true. Then somehow the acceptance came naturally. My parents just needed time, exposure to the concept, and quite a lot of education about what Tourette's really is.

All that being said, they aren't perfect. They continue to tell me to be very careful about who I tell about my Tourette's. They just want the best for me and don't want anything to hold me back in life, and I understand that. They don't want me to openly admit I have Tourette's publicly or on the internet (hence the pen name for my blog, because if my parents found this blog I would never hear the end of it). I feel confident that if other people know I have TS, they won't view me any differently. Again and again this fact is proven to me. I tell people in my life on a regular basis that I have TS, because, well,  it makes my life so much easier for them to know what's going on when I start making noises and twitching a bunch in front of them. Almost everyone in my life knows I have Tourette's, and they still treat me the exact same way as they did before they knew. I have so many friends who are so supportive about my Tourette's and who accept me for who I am. They love hearing about camp, openly ask me questions, and joke with me about my tics to lighten the mood when my tics are bad. I feel so lucky to have such an amazing support system and I am so glad that slowly but surely thanks to camp twitch and shout my parents are coming on board :) 

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