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Being diagnosed with TS as a teen is tough

When did I fist realize that I was a little different than the rest? I don’t know that there was one eye-opening moment. It was a realization that came with time, that came with looking into myself and figuring out what made me the person I am.

My parents knew I was different from the beginning, but pretended not to. They pretended there was nothing they couldn’t fix with a little discipline and preaching of “self-control,” a word which I had heard too many times.

I wasn’t officially diagnosed with Tourette’s Syndrome until I was about 16, and I’m 18 now, but I had known for a long time that there was something different about me. My tics started getting bad around third grade, and although I had no idea why I did these weird things, I just couldn’t stop.

I did things such as suck in air with my mouth, make slurping noises, tighten my muscles in my throat and my stomach, jump, skip, twitch my eyebrows, sniffle, cough and stomp. On top of that, I had many compulsions and obsessions as well. I was made fun of a fair amount and I hated doing these things, but no matter how hard I tried, I just couldn’t stop.

My parents took me to occupational therapists, behavioral therapists and psychologists, but neither my parents nor the professionals knew anything about Tourette’s Syndrome, and none of them thought of sending me to a neurologist. The only thing they could think of was that I had ADD.

I was misdiagnosed with ADD in about fourth grade by some kind of psychologist and because of my sniffling, coughing, throat clearing, and lip licking tics I had seen more ear, nose, and throat doctors than I could count.

I was officially diagnosed with OCD during the summer of my sophomore year of high school, and my tics had gotten significantly more severe and during the summer time. I started having more “typical” tics that really couldn’t be attributed to anything else such as ADD or moderately small sinuses.

I started jerking my arms, head and legs, and also started making squeaking sounds. I switched to a new psychologist and finally someone knew a thing or two about Tourette’s. It wasn’t long before she suggested to me that I might have Tourette’s Syndrome and that I should see a neurologist.

Finally, someone knew what to do with me, knew the correct doctor to send me to and knew that I had something more than just ADD and sinus problems. I was so incredibly relieved!

After all the waiting, I was very anxious to find out what was going on with me, and when my appointment came up in February, I was so incredibly relieved when the neurologist finally diagnosed me with Tourette’s Syndrome. I had a name for all these things I couldn’t control all those years of my childhood and finally people believed that I didn’t just need to use more self-control.

It’s a funny thing, being relieved and almost happy to be diagnosed with a condition such as this, but after living with no explanation for about eight years, I was just happy to finally have an answer.

Right now, I deal with a lot of tics that can get pretty painful and frustrating at times, but I never let Tourette’s stop me. I blog regularly about my life with TS in hopes of helping and education others, and you can read and comment on my blog here.

I also volunteer and attend meetings with my local TSA chapter. I have a lot of support from my friends and family who all know about my TS now. Even though at times I can’t control these movements and sounds, I will never let it stop me or hold me back and I will do my best to show people that Tourette’s is not something to be ashamed of.

RuthieP

2 Comments

  1. Hey Ruthie,

    Im T.J. i have been in the same boat as you. But the strange thing is it seems as if we both developed the same symptoms at the same time, aside from you getting tics around third grade. I too have been dealing with TS for a long time now, I am 18 years old as well, I remember as well when i heard my answer of what i have had for the longest time. Tourette’s isnt something to be ashamed of, but it is hell and not just you or me but alot of kids who have it are thinking the same way. If you want to talk ever about anything, heres my facebook, friend me if you’d like. T.J. Stanley, Ridge High School. Thanks for your blog

    • It’s always good to hear from someone who is in the same boat as you are! I try not to think of my Tourette’s as hell, but it can get really hard to deal with. I also saw your video on youtube and I wanted to say that it’s really well done and very inspiring. Thanks for giving me your facebook! I’ll friend you! Feel free to comment on my blog posts on my personal blog as well. I always like getting comments.

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