Guest Blogger: Tourette Syndrome + OCD was exhausting & difficult

It was more than 23 years ago that I was diagnosed with Tourette Syndrome.

I’ve learned a lot in that time. About myself, about others and most of all, that our relationship with mental health and conditions like TS is far more challenging than it should be.

My parents had a lot on their plate, jobs, managing a household, raising 3 children (one with considerable special needs), when I started developing some unfamiliar behaviours. A reoccurring urge to violently shake my head was one that began to frighten them. I once became so distracted with this urge that I stopped my bicycle in the middle of the road to indulge, without paying attention to the flow of cars around me. Sometime after that we began seeing doctors and specialists and figuring out what was going on.

Tourette Syndrome is a neurological condition that essentially causes repeated involuntary movements and sounds that are referred to as “tics”. It affects everyone differently, and contrary to what you may have seen in movies, most persons affected by it do not swear uncontrollably.

Tourette Syndrome was something seemingly unknown to most people and there was lots of learning for all of us to do. What was most challenging for me wasn’t necessarily my life at home or these urges (“tics”). It wasn’t that I had to live with them that caused me the most trouble, it was that I was expected to live a normal life in a world that wasn’t always going to just let it happen.

From experience, I quickly knew that each time I gave in to my tics, someone was going to notice. I knew that each time someone noticed, they were going to make choices. Were they going to pretend nothing happened? Were they going to exploit the opportunity to make a spectacle of it and lead others in a chorus of teasing and diminishment of my character? Or were they going to simply get “weirded out” and lose trust in even being near me?

Naturally, thinking about all of these things stressed me out and just fuelled more of a need to indulge my tics. Trying to hide and suppress them took a lot of energy. During the worst of it, there were probably days where I spent most of my time managing these expectations and very little on school work, engaging with friends or anything else until I finally had a moment of privacy. I was usually too exhausted to do a whole lot with those moments.

As I’ve written before, there were other things also happening to make my childhood difficult in ways that probably interacted with or exasperated this condition.

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I’m still at it!

5 years post National Youth Ambassador Training in Washington, DC and I am still at it!

Following my fall semester at SUNY-Binghamton I was asked to return to Memorial Middle School in Fairlawn, N.J., to speak with the 7th-graders about Tourette Syndrome and bullying. During the back-to-back presentations, I had the opportunity to tell my TS story, as well as explain what the disorder is and why you should not bully anyone.

The students were engaged throughout the entire presentation and had a bunch of questions. For example:

  • Were you ever bullied in school?
  • Do you still tic?
  • Do you know alot of other people with TS?

They were all shocked at how difficult it was to hold in a tic when I compared it to a scratch on their head and did not allow them to touch their heads for two minutes; everyone was squiriming in their seats.

All of the students promised me that they understood my message and that they would not bully their peers.

I encourage all of you readers to speak out about Tourette Syndrome, bullying and your own personal story. If you have any quesitons about how to get involved, please contact the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS).

Haddon Township (N.J.) High School students learn about Tourette Syndrome

Faculty members of Haddon Township High School and student members of the school’s Psychology Club devoted time on February 2 to learn about Tourette Syndrome.

Known also as TS, Tourette Syndrome is a neurological disorder characterized by uncontrollable sounds and movements known as tics. Even though as many as 1 in 100 Americans show symptoms of the disorder, it’s still frequently misdiagnosed and misunderstood.

The New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS) Education Outreach Program offers school in-service presentations for faculty and students. For educators, the focus is on identifying and accommodating students with TS and its co-occurring disorders including ADHD, OCD, depression and anxiety. Students are given a lesson in acceptance, anti-bullying and empowerment.

NJCTS Executive Director Faith W. Rice is grateful for the invitations to present at schools throughout the state. “Awareness and training go a long way in creating understanding of Tourette Syndrome and compassion for those who are living with it,” she said.

“Even if a teacher or classmate hasn’t met a student with TS yet, chances are likely that they soon will,” added Rice. “Our presentations are taking away the stigma of this disorder, and by doing we’re making schools a safer place for kids with TS and other neurological disorders.”

NJCTS School In-Service presentations are delivered by master’s level educators with (often personal) experience assisting students with Tourette Syndrome. For more information about the Education Outreach Program, or how to arrange a presentation for your school or club, visit www.njcts.org or call 908-575-7350.

2014 NJCTS Children’s Scholarship Award Essay: “I Have No Regrets”

This is the essay I submitted to the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2014 Children’s Scholarship Award contest. I hope you enjoy it!

When the word “disease” is said, overcoming is definitely not the first thing that comes to peoples’ minds. In my opinion, having Tourette’s is a battle. I have been bullied, ridiculed, and laughed at. I think a lot about the kid I could have become, that is, if I surrendered. But luckily, I didn’t.

I managed to muster the strength and courage to face my problem. In fact, I sometimes convince myself that I no longer have TS. I have accepted the fact that I will never be cured of this. So what does this mean for me? Hide behind excuses for the rest of my life? Succumb to being a nobody? Not anymore.

Ever since I entered high school, I slowly started to see the best out of every situation. I have used my tics to my advantage by channeling my energy into something positive: setting goals and achieving them. Why should I let TS get in the way of challenging myself? I found that I can use this obstacle to my advantage.

When I was in middle school, I definitely didn’t have the same optimism about having TS as I do now. Unfortunately back then, I fell into the trap of self-pity. I would always make excuses for myself. I didn’t challenge myself in school because I thought my mental abilities weren’t sufficient for mainstream classes.

My bizarre motor tics made me feel out of place and ashamed. My fear was that people would make fun of me, especially this one tic in particular (that I still have today) where I tweak my neck to the side to feel temporary relief. If I held my tics in, I felt like exploding. Often times I would tic then nonchalantly try to cover it up by using “normal” gestures, such as cracking my neck.

Once I gained the courage to move into mainstream classes in my last year of middle school, things weren’t as bad as I had anticipated.

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2014 NJCTS Children’s Scholarship Award Essay: “Tourette doesn’t define me anymore”

This is the essay I submitted to the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2014 Children’s Scholarship Award contest. I hope you enjoy it!

I don’t remember anything from my middle school years. It’s such a blur to me. I made myself not want to remember. I didn’t want to hear the other students laugh at me; calling me “Twitch,” “Twitchli’ or hear them say, “Hey everyone! Let’s do the Julia!” That’s what I heard in those hallways.

That’s the kind of stuff you would hear being said about a young girl with Tourette’s syndrome. Tourette’s syndrome is a neurological disorder that is characterized by uncontrollable tics, body movements and noises. It is caused by the nervous system. I was diagnosed with Tourette’s at the end of fifth grade.

My tics started around the beginning/middle of that year. Teachers weren’t attuned to bullying in those days, so I was left by myself to suffer. I would get in trouble with my teachers for making noises, rolling my eyes, raising my brows and having an episode. They wouldn’t believe me when I said I couldn’t control it. Some even made fun of it. They didn’t understand what I was going through. No one did. Not even my own family. They would yell at me to be quiet all the time.

Memories from middles have returned and I’ve had flashbacks from that time I remember being in the guidance office at least twice a week, whether it was during lunch and recess or during a class. I remember eating my lunch in the bathroom, sitting in the corner on the floor or in the giant handicapped stall.

During a huge science project in 6th grade, while I was giving my presentation in class, I became so anxious that my tics became uncontrollable, causing the other students to laugh at me. I finished my presentation, but as soon as I was done, I ran out of the classroom hysterically crying and embarrassed.

Over the years, my tics have gotten better and people have become more understanding. Now, I have an amazing group of friends. I have participated in the musical at my high school since my freshman year. I can say that I sang the National Anthem at the basketball games for boys and girls and wrestling matches at school.

I’m friendly to everyone I know and meet, despite how other treated me in the past. I am more outgoing than I was in middle school. I dance, sing act and even model now. Doing these activities have made me more confident. In everything I do now, I don’t let this disorder be such a conflict in my life.

I have been a victim of Tourette’s syndrome for more than eight years and have learned to deal with it. It’s part of my life whether I like it or not. TS has made me stronger and I will not let it become my biggest deficit. I will not let Tourette’s define me anymore.