Struggling with tics and anxiety and looking for support

Hi! My name is Hannah, and I have been struggling with Tourette’s for about 6-7 years now. I was never formally diagnosed, though. However, I was diagnosed with depression, ocd, and have multiple symptoms of ADD, however I don’t know if that’s just because of my tics or not. Ever since I was a kid I have done weird tics that made others look at me like I was crazy. I used to push in on my stomach almost as if I was trying to hurt myself. That was where it started. I then developed head-banging & hand shaking symptoms. That was in 4-5 grade. (I still have those 2 to this day & I am a junior in high school) My first vocal tic was a noise I would make as if I was trying to mock a frog. Followed by constant throat clearing and grunting. Those two have also lasted to this day, however the frog noise lasted around 2 years. By seventh grade, I started feeling extremely depressed and I got prescribed 40mg of Prozac to try and help my depression and anxiety. Once I started taking that, my tics continued to get worse. I was still feeling depressed for about 2 years and I developed new tics. They included eye blinking, kicking my leg, having to touch something with my right hand after it touches my left, mocking facial gestures of others (especially on tv), mocking others noises, thumb clicking, shoulder shrugging, jaw clenching, and a few others that were minor. (One that I have developed recently (within the past year) is that a few nights a week or when I am taking a nap, I’ll be in the middle of sleeping/ falling asleep, and I will wake myself up by shouting a random word that I have no control over.)They seem to get worse when I’m thinking about them, but they get better when I’m either doing math or art. I am an honors student in Highschool and make all a’s, which is why my mother never felt like it truly affected me as much as it does. It may not affect me so much academically, but socially and physically it is terrible. Yes, I have a small friend group that knows about my symptoms and makes sure to accept my flaws, but in an uncomfortable situation, or around new people, my tics begin to spiral out of control to where I even sometimes have minutes at a time where my whole body starts shaking and all of my tics go off at once. A lot of the time, I can suppress my tics when I am trying to attract as little attention to myself as possible. However, the longer I hold it in, the worse the urges get. Once I let it out, it all comes out at once and I can’t control it until it takes its toll. I am scared that this will be difficult for me when I apply for a job or try to do anything on my own when I graduate highschool. I have extremely bad social anxiety as well, so the job interview is the scariest part of a job for me. If I am not familiar with the person I get nervous and my tics start to spiral, motor and vocal. I always feel like an outcast because people just don’t understand. I would be so thankful if you would accept all of my efforts to join this blog! I have been looking for a support group and people to talk to that share similar struggles as me and this would be an amazing opportunity! Thank you so much for reading this it really means a lot to me.

Side note:

There are also other minor tics that I do excessively that I never knew were tics until I researched this subject. Such as nail biting, lip biting, knuckle cracking, etc. I didn’t know if those were relevant or not as many people do those things when they get nervous.

The GreaTS have arrived!

TheGreaTS_NJCTS_BannerChange the world. Stand With The GreaTS! Join the global community to break down social stigmas, create awareness, and provide support resources around Tourette Syndrome. This is your chance to make a difference. Get involved today at standwiththegreats.org. Share your message of support using #standwiththegreats.

Youth Advocate Tess speaks to doctors at Hunterdon Medical Center

Last week, NJCTS Youth Advocate Tess Kowalski and NJCTS partner doctor Harvey Bennett, MD, Goryeb Children’s Hospital, engaged the doctors at Hunterdon Medical Center with a powerful Grand Rounds presentation. After Dr. Bennett gave an overview of Tourette Syndrome and the associated disorders from a medical perspective, Tess and her father, Tim, shared their personal experiences with TS.

Tess and other NJCTS Youth Advocates like her are helping the medical community deepen their understanding of the needs of patients with TS and their families. Way to go, Tess!

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NJCTS Youth Advocates educate students at Hamilton Primary School about TS

Earlier this week, NJCTS Youth Advocates Tess and Paige Kowalski were joined by Youth Advocate-in-training Cami Jimenez to present to the third graders at Hamilton Primary School in Bridgewater, NJ. More than 115 students learned about Tourette Syndrome, acceptance, and treating others with respect. After school that same day, Education Outreach Coordinator Gina Maria Jones presented to 50 faculty and staff members. Now, the Hamilton School community has the tools to help kids with TS thrive. Way to go, ladies!

Paige and Tess discuss what causes tics to become worse.

Paige and Tess discuss what causes tics to become worse.

Paige and Tess share their TS stories.

Paige and Tess share their TS stories.

Cami, Paige, and Tess take questions from the third graders.

Cami, Paige, and Tess take questions from the third graders.

NJCTS Education Outreach Coordinator Gina Maria Jones looks on as the Youth Advocates answer questions.

NJCTS Education Outreach Coordinator Gina Maria Jones looks on as the Youth Advocates answer questions.

 

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.