True Story: I Have Tourette’s Syndrome

This is one of many True Story interviews in which we talk to people who have experienced interesting/challenging/amazing things.  This is the story of Liz and her diagnosis with Tourette Syndrome.


Tell us a bit about yourself! 

I’m an Internet awareness activist trying to make abuse loud. I’m 22 years old, I live in Texas (hopefully not forever), and I’m trying to find myself. I blog over at Janepedia, and it really helps keep me sane.
For those of us who don’t know, what is Tourette’s?
Tourette Syndrome is a condition that causes those to have it to have tics, which are involuntary movements or sounds. Those who have it may also have ADHD, OCD or other disorders associated with Tourette’s, but it’s not necessarily the case for everyone. Sometimes the person may not even know they’re acting out on a tic. Anger issues can also exist in those with Tourette’s, and people not educated on the difference between Tourette’s and Bipolar Disorder oftentimes don’t understand.
From my experience, different researchers have their own definitions of Tourette Syndrome, hence why resources on the Internet and in-office visits to the specialty doctor’s offices can often result in very different explanations.
For me, my tics aren’t as bad whilst I sleep.
I think a lot of us associate Tourette’s with swearing. Is that something you struggle with?
Sometimes. It makes things more difficult for me because when I get upset, I go from merely upset to super angry. I really dislike cursing, but I can’t help it. I suppose that I could, but suppressing urges from Tourette’s really only makes me have more tics.
I don’t just swear a ton, though. I’ve only ever met one person who would randomly start swearing. When you see it for the first time, it’s kind of scary because you don’t really know what’s happening.
When were you diagnosed and how did you realize something was amiss?
I was diagnosed at a really young age; I think I was diagnosed around the same time I was diagnosed with Asperger’s. All I really remember is going to a “real” doctor who would ask me real questions and examine the way I behaved.
I really started noticing I was different in fourth grade when I would feel urges (and act upon them) to bend over, wrap my hands around my ankles, release my ankles, cup my knees, touch my shoulders, and push on the centerpiece of my glasses during kickball before I was ready to kick. If I messed up, I had to start all over again and do it three times because I had messed up.
Is it possible to ‘cure’ Tourette’s?
There’s not currently a cure for Tourette Syndrome. I could take medicine for it, but 1) I have a lot of allergies and 2) most of the people in my family don’t believe that I have it. To treat it, they want me to pray to God for him to take this away.
Once I find a therapist/psychiatrist, however, I hope that a treatment is possible for me. Suppressing the tics is exhausting and only makes the urges worse. My family’s not supportive, and that breaks my heart.
How has your diagnosis affected your life?
Tourette’s isn’t really something that many people understand, so it makes things really difficult when you’re asked if you’re cold (I have shoulder tics) or told to blow your nose (I have sniffle tics). When someone coughs, I cough, and when someone points out my tics they get worse.
I try to find things to laugh about with it, though. An opposite to the swearing tic would be quoting Bible verses, and I have met someone with that before. All in all, it’s made family discussions regarding my mental health awkward and irritating. Some want to see papers, some want an immediate cure. Some just find my behavior crazy and assume that I have Bipolar Disorder. I tested negative for that. I feel insulted when they want to see proof, because this thing that I have is something that others have, and it makes me feel less crazy and better than normal. The cause of being made fun of all of these years is finally something I can explain – it gives me answers, it makes me fit in.
What advice would you give to others struggling with something similar?
Don’t let anyone tell you how to feel about it. The definition of a mental illness/disorder/etc. does not define you.

If you think you have Tourette’s, then try to find someone who specializes in diagnosing Tourette’s. They should also have experience with Bipolar Disorder, OCD, ADHD and the like. Don’t be afraid to get more than one opinion.Thanks so much for sharing, Liz!  Do any of you struggle with tic or know anyone who does?

photo by Soumyadeep Paul // cc

16 Comments

Anonymous

I found this post really inspiring. You have a great positive attitude, which is really important! It inspires me to work on my positivity. I have severe OCD that I manage with medication, and although all of my physical tics from childhood have faded away, I really struggle at times with my other symptoms. I'm really sorry that your family de-legitimizes your condition. Maybe as your life goes on and you get help from medication and/or a therapist, they will begin to understand. But in the meantime, it seems like you are really focused on advocating for yourself and staying positive, which is great! And in my limited knowledge of Texas, it does seem that elsewhere in the U.S., more people do understand! I have a friend with Tourette; his mostly manifests itself as some head tics and extreme anger, but all of our mutual acquaintances accept him for how he is. So please know that not only are you NOT crazy, but there are people out there who will understand/not judge you! Best of luck!

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Samantha K

I watched a friend struggle with Tourette's. Or I should say I watched her family struggle with it. Her family would just yell at her and tell her to stop it. Honestly I think it made the tics worse. It is really worry some how we tend to deal with mental illness. It isn't a decision someone makes, it doesn't make them any less of a person, nor should it define them. Thank you for sharing your story.

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JoyW

Thank you for sharing your story, Liz. My family has recently been coming to grips with the fact that my pre-teen sister has a tic disorder. So far doctors that my sister has seen are not willing to diagnose her, but it is obvious to those of us who know her. I wish that your family was more supportive, and hope that both you and my sister will live as confident, loved women!

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Liz

An update on this: My family finally allowed me to get into therapy, and medicine may actually be something I can eventually take (e.g. muscle relaxers).

I really forgot all about this. 😡

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angieeatspeace

Thanks so much for sharing your story. I have been involved with fundraising for TSA (Tourette Syndrome Association) and they are such a great organization for information and helping you connect with others who are going through similar struggles. Maybe check them out for some support!

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Tyler

I was diagnosed with Tourette Syndrome in grade 5 and it took a teacher seeing the signs to get me in to see what was going on. I used to be on a couple different meds for it, but have since been able to not have to take them as I was taught different coping mechanisms (like refocusing attention). Teachers in school used to get annoyed with me because of the tics…but eventually once I had a medical diagnosis, they got better.

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