2015 NJCTS Youth Scholarship Award Essay: “Living with Tourette’s”

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2015 Children’s Scholarship Award contest. I hope you enjoy it!

Tourette’s hasn’t played a small part in my life, it’s played in a majority of it. I like to think that I have it under control and that it doesn’t control me, but it still dictates most of my daily life. I don’t do these things because I want to, but because I feel the need to. I have to.

People sometimes give me funny looks and ask if I’m alright. I’ll just nod because if I told them I’m not alright and that I feel bothered all the time, they wouldn’t understand. Because they can’t understand what I am going through is the reason why I try to hide it. Suppress it.

I also have OCD so during school, most of my time is either spent doing tics or checking things, or, trying to stop these things from happening. I get so caught up in my image that I forget to actually live my life sometimes. Medication and therapy has helped me come a long way, but there is only so far someone can walk away from their true self. This is who I am, and no amount of medication or therapy can change that.

People will sometimes ask me I if took my medication that day. I take it at night anyway but the point is that I can’t change who I am, I’m stuck like this. If I could have changed, trust me, I would have right when I heard that diagnosis.

The physical effects are hard enough to bear but couple that with the mental hardship of knowing almost no one understands and that you can’t fix your problem. It eats away at you. The social stigma associated with mental disorders doesn’t do me any justice either. People stereotype me for something I can’t change, much like an ethnicity or nationality. No one wants to take into account that everyone is different, and that you don’t have to judge everyone all the time. Everyone just wants to make themselves feel superior and target people like me in the process. The result of being a potential target of ridicule has led me to better understand and accept others better. I may still laugh at how someone dresses or holds themselves, but I will never laugh at things that they can’t change, I just won’t. I’ve been through what they have and have realized,they don’t need any more hardship in their lives, especially for something that can’t go away.

Tourette’s might have brought me suffering, but it’s also brought me the ability to feel empathy towards those suffering around me. It has molded me to be the person that I am today and in conjunction with a recent death in the family, has guided me to select medicine as a career so I will be a pre-med major in college.

Tourette Syndrome is so much more than tics

Sorry there hasn’t been any posts in a while. All of us are busy with exams at the moment.

I would like to share with you my speech I did for my GCSE English Speaking exam about Tourette Syndrome so here it is:

Tourette Syndrome is a neurological condition which is categorised by “tics”. Tics are rapid and recurrent uncontrollable movements and noises. People who suffer from Tourettes are usually diagnosed at around 6-9 years old. Although, people may be diagnosed earlier or later than this. I, personally, was diagnosed with Tourette Syndrome 9 years ago, when I was 7 years old.

I have always been treated differently due to being adopted and, therefore, having older parents. I was always known as “the weird one”. People can be very mean when you’re different. I have always had Tourettes since I was little. I would often do something without realising and then get told off because of it.

I still do occasionally get told off for my tics, but then the person remembers that I have Tourettes and that I can’t help it. Even my parents do this sometimes. I may be tapping on something and they’ll tell me to stop only for me to remind them that I can’t help it. I feel like this only happens due to peoples perception of what a tic should look or sound like, but the thing is that there is no structure to a tic. They can be anything at all. My tapping tic is where I have to tap an object using a certain pattern which I have to repeat in sets of four until it feels right and if I mess it up, I must start the pattern all over again.

I can understand how my parents sometimes do not realise this is a tic, because it isn’t just a tic. It is also due to OCD. The counting part is OCD, and the part where I have to do it again and again if I mess up is also to do with OCD. It isn’t as though I think something bad will happen if I don’t do it, it is that my OCD makes me feel as though something might happen if I don’t complete it.

Due to Tourettes I also have other, related, disorders. OCD is the one I just mentioned.

I also have ADHD which causes me to get distracted very easily, causing me to often get told off in class for not concentrating, and I often miss things the teacher says due to getting distracted by others or writing down notes – I find it hard to concentrate on writing and listening at the same time.

There is also Sensory Processing Disorder. This means that I do not process sensory input in the same way as others do. There are certain noises I do not like and the only way to explain how they affect me in a way you’ll understand is that they hurt me, that is why I have my ear defenders. They protect me from these noises and I can also use them when I need to write and there is too much noise.

Due to this, at dinner time, I tend to sit in a different room to eat or listen to music while I eat so I don’t hear the sound of cutlery scraping on plates. My parents try not to do this, but it is hard to eat without touching your plate with the knife or fork so everyday, except Sunday, I sit in a separate room to eat. Hearing these certain noises that I am sensitive to makes it extremely hard to concentrate as all I end up thinking about is how I want the noise to stop, or that I want to get away from the sound.

All of this is just due to having Tourette Syndrome. People always assume that they know everything about Tourettes but it is so much more and can affect those with it in many different ways. I need people to know that there aren’t only tics that I have to deal with, but there are also OCD rituals as well as concentration and sensory issues too.

Tourette Syndrome is so much more than just tics. I want others to see that. Thank you.

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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New Jersey teen wants to see more acceptance and education

NJ+Walks+for+TS+LOGO2Hallie Hoffman wants you to know that people with Tourette Syndrome (TS) are more than just their diagnosis.

“TS is just one group we belong to, just as people may identify themselves with other groups such as athletes or musicians,” she said, “TS is not a disorder that puts people at social odds with others, as it is sometimes portrayed in the media.”

Tourette Syndrome (TS) is a neurological disorder characterized by involuntary movements or sounds known as tics. It is often accompanied by other disorders including ADHD, anxiety, obsessive-compulsive disorder, depression and learning disabilities. As many as 1 in 100 school-age children show symptoms of TS, which means there are more than 20,000 New Jersey children living with the disorder. Hallie is one of them, and she joins other teens as Youth Co-Chairs for this year’s NJ Walks for TS at Princeton.

NJ Walks for TS is a 5K walk and family fun run at Mercer County Park on March 29 by the New Jersey Center for Tourette Syndrome (NJCTS). The event raises awareness while breaking the stigma attached to the disorder.

“Our mission is one of acceptance and education, and we need the public’s help to accomplish this.” said Hallie.

To help is to attend the walk or donate. Proceeds from NJ Walks for TS will benefit the Education Outreach Programs of NJCTS, which include youth leadership development, in-services for educators and students, hospital grand rounds presentations for healthcare professionals and scholarships for students with TS.

Education is a very powerful tool in fighting the stigma attached to this disorder, and Hallie knows this well. Her interest in learning more about TS led her to invite a speaker to her school to talk about the disorder- before she even had a diagnosis.

“Even though I knew I had TS, my parents were afraid that if I got the diagnosis, I would be bullied by my peers,” Hallie said. ” It was my interest in educating others about TS that helped me confront my parents about getting a diagnosis, and shortly after I became trained as a Youth Advocate for NJCTS.”

Youth Advocates travel to schools and hospitals to train students and healthcare professionals about TS. Last summer, Hallie was in the first class of the Tim Howard NJCTS Leadership Academy.

“Young people with TS are a force, they are motivated and dedicated to helping their peers living with TS and other neurological disorders,” NJCTS Executive Director Faith W. Rice said. “NJ Walks for TS was founded for kids, by kids- and the work they are able to accomplish will help a new generation.”

Hallie is counting on the public to make this year’s event bigger than ever.

“Not only is [NJ Walks for TS] really fun, but it’s a great way to be a part of a larger goal,” she said. “A 5K may not seem that important, but the support shown and the money raised make a huge difference.”

South Jersey teens with Tourette Syndrome train as youth leaders

NJCTS Youth Development Coordinator Melissa Fowler, M.Ed., leads South Jersey teens in leadership training at Virtua Health and Wellness Center in Voorhees on January 31.

Teens in South Jersey are ready to reach out and help peers and health-care professionals understand the complexities of life with Tourette Syndrome (TS).

TS is a neurological disorder characterized by involuntary sounds or movements known as tics. In addition, the majority of people with TS also have an accompanying disorder like ADHD, OCD, depression or anxiety. As many as 1 in 100 Americans show symptoms of TS, but TS is often misdiagnosed and misunderstood by the medical community.  

The New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) is working to combat stigma and improve diagnosis through its Education Outreach Program.

“People living with a neurological disorder understand the world in a very unique way,” said Faith W. Rice, NJCTS executive director, “They can describe life with TS in ways that are having a profound effect on the community, healthcare providers, peers and educators – putting a face on an often misunderstood disorder.”

On January 31, 10 local teens and their families gathered at the Virtua Health and Wellness Center in Voorhees for an NJCTS Youth Advocate training session.

“There are families in this part of the state who are struggling without the proper diagnosis and appropriate treatments,” said Rice, “The teens we work with, because of their challenges, have an understanding and compassion far beyond their years.”

The goal is to produce teen advocates who will represent NJCTS in peer in-service trainings at local schools and will present information about TS to health-care professionals. The NJCTS Patient-Centered Education Program trains Youth Advocates to attend hospital grand rounds sessions and educate resident physicians on how to identify and recognize patients with TS.

“I now feel like I have the power to help people with TS on a larger scale,” said one participant, who chose to remain anonymous. “The training helped me realize how much more I can be doing.”

“These teens are uniquely talented, poised and capable of delivering a message that is already making difference across our state,” said Rice, “Our hope is that we will contribute to more accurate diagnosis and a safer environment for kids who are living with TS and other neurological disorders.”

To learn more about Tourette Syndrome, and the programs and services of NJCTS, visit www.njcts.org or call 908-575-7350.