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.