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How others view my Tourette’s

The other day my creative writing seminar had a guest poet, Professor B. She is such an inspiration! I love her poetry and how she explained her process of writing and the different ways she goes about writing poetry. After listening to her speak, I just wanted to go back to my dorm room and write poetry, but unfortunately I had a lot of homework and studying for classes that I just now finished.

Anyway, as I mentioned in a previous blog, my creative writing seminar professor e-mailed me about if I would like her to inform guests about my Tourette’s. I told her that she has my permission to educate all future guests about my Tourette’s and that it will be very helpful! I also gave her some suggested language to use when telling the guests about Tourette’s, which she found helpful as well.

She must have done a very good job educating our guest poet for today because I had no troubles at all. Professor B didn’t even bat an eye when my vocal and motor tics became pretty frequent only about 5 minutes into class and pretty much stayed that way for the rest of class.

I was doing lots of motor tics, but the ones that seem to draw the most attention are my vocal tics. The ones I was doing in class today were my high-pitched squeaks, a sound that sounds like “uh” “uh” or “ah” “ah”, and my tic where I say “woof”.

I really appreciated this positive experience with a new professor, who I had never even met before personally, and was very impressed with my professor’s ability to advocate for me so that there were no problems at all with the guest poet.

Sometimes I have a nagging feeling, though, when I’m having a lot of tics in a class or when I meet a new professor or adult that I haven’t previously talked with about my Tourette’s that the professor or adult has an automatic negative feeling toward me and my tics or is annoyed by them or doesn’t like me because of my Tourette’s.

I think I have this nagging feeling not because it is true in any way, but because of what my parents told me around my initial time of diagnosis. They told me that I shouldn’t tell anyone about my Tourette’s because it will close doors for me, those who I tell will look down on me, and that it will effect the way people view me and cause them to look at me in a negative way.

Since my initial time of diagnosis I think my parents have changed their attitude about Tourette’s a lot. They now know that most people do not react in that way and it is very rare to find anyone who will react in that way. I know, though, that especially my mother and my grandparents — although they have made a lot of progress — still harbor feelings like this that others will look down on me for having Tourette’s.

For a 16-year-old who was just diagnosed, hearing this from my parents was very damaging and hard to take in. It has taken a lot of time, thought, persuasion by others, and positive examples of others who have TS — and positive experiences of my own — for me to overcome the effects that was caused by the things my parents initially told me.

Their words still affect me, though, even now — even after I have had so many positive experiences that tell me the exact opposite of what they initially told me. I have had many professors and other adults tell me that they are inspired by my ability to advocate for myself and others, that they admire my strength, and that my Tourette’s does not change the person I am.

The fact that I tic, even when I am ticcing a lot, does not change who I am as a person and does not change how others view me. I have to remind myself of this a lot, though, and it is not something that I naturally know or feel.

Since my first experiences with my Tourette’s and adults in my life was so negative, I have to almost constantly remind myself of this. I frequently have to call to mind the exact positive experiences and exact positive words that others have said to me about my Tourette’s to convince myself that others do not look down upon me or view me negatively because of my tics.

This may also be my OCD coming into play here, especially the trying to convince myself part and having to “replay” positive events in my head as well, because those tend to be typical aspects of the mental compulsions of OCD.

I just wish, though, that I knew in my heart that others do not look at me negatively because of my tics and that I did not have to try to convince myself that others see me for who I am and not just for what I have. I feel like I know intellectually that it’s not true that others see my tics and my Tourette’s as something negative or look down on me for it, and I have so many experiences that confirm this. I just wish I knew this with more conviction emotionally as well.

RuthieP

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