My name is Eleanor, but people call me Ellie. Right around the time I was turning eight, my mom noticed I was bobbing my head a lot, and making noises. My mom suspected Tourette Syndrome and she took me to my doctor who confirmed my mom’s suspicions. Although I was officially diagnosed with Tourette Syndrome at the age of eight, when I was younger, I often felt the need to have everything lined up in a specific way. I feel that Tourette Syndrome or even co-occurring symptoms were showing themselves before I was officially diagnosed. I struggled with my diagnosis. I would often ask my mom, “why me?” It just didn’t seem fair. But now sometimes I think my Tourette Syndrome makes me pretty awesome. I do still have days sometimes when the “why me?” creeps in. I wasn’t sure what was going on, but once my parents told me that I had Tourette Syndrome, it was a relief to put a name to what I was experiencing. I knew that we were starting a journey where I would have a lot of questions and my mom was honest with me telling me she didn’t have the answers. I can understand that a lot more now, as I’ve learned that no two people with Tourette
Syndrome have the same experiences. While similar, everyone’s journey is very different. I knew that things would be different at school. My mom would meet with the school administrators and talk to my classmates about Tourette Syndrome. The hope was if I was upfront with my Tourette Syndrome, my classmates would be more understanding. That didn’t always happen though. One classmate ran around at recess yelling, “Ellie has Tourette Syndrome!”, and I’ve had to deal with being bullied. I have some accommodations in place to, as my counselor said, “level the playing field.” Sometimes I feel that these accommodations make me stand out. I can have a hard time with that because I am just like any other student, and I want to be seen that way. I have learned that there are co-occurring conditions that can make school challenging for me. I work hard and do my best and not let these co-occurring conditions hold me back. I want to be treated like any other student. Sometimes I can struggle, and my tics are very frustrating when I’m trying to do my homework.
As I have gotten older, I have decided to not talk to my classmates as a whole about my Tourette Syndrome. Although maybe they mean well, I feel sometimes my peers don’t understand what it's like for me to live with Tourette Syndrome. It gets frustrating that any little move I make, I will be asked if it's a tic. I have had peers act like they are having a seizure and say that is what my Tourette Syndrome is like.
I have told people about my Tourette Syndrome. I have explained what Tourette Syndrome is, and that sometimes I will have motor and/or vocal tics. I have found friends who are aware I have Tourette Syndrome, but do not treat me any differently.
I have become more comfortable with myself, and I have the courage, strength and pride to stand up and speak about my Tourette Syndrome and also educate people about what Tourette Syndrome is and what it isn’t.
Even though my life has had its challenges, I don’t let that stop me from doing the things I love. I enjoy acting and singing. I’ve had the opportunity to sing the National Anthem at a minor league hockey game and recently landed the only solo in my upcoming school concert. I’ve been able to participate in plays through a local theater company. I also work hard at school and maintain a great GPA.
Tourette Syndrome is so much more than tics. I want to share that with people to show that there are a lot of struggles that people with Tourette Syndrome have, and it isn’t always noticeable. Everybody’s Tourette journey is different, and they have their own unique set of challenges. Sometimes it seems unfair, and it can be tough feeling different from my peers. Sometimes my co-occurring conditions bother me more than my tics do. Sometimes it seems like too much all at once. I do my best to have a bright outlook on life and I know I have a very wonderful future ahead of me. And above all, I remember to be kind.
Hi, I’m Chloe and I'm a happy and strong person with Tourette Syndrome. I was diagnosed in third grade with Tourette Syndrome, ADHD, OCD tendencies, and anxiety. Since then, I've been able to become stronger and adapt my life to be the best version of myself, no matter what. It can be hard sometimes though as most of my tics tend to be things the outside world can't really see or hear. For example, my stomach muscles squeeze and release again and again, my toes clench over and over, and my jaw contracts repeatedly. When my tics aren’t obvious, it makes people think they have permission to tell me that I don't have Tourette Syndrome or that I've always been faking. Just because you don’t always notice my ticcing, it doesn't mean that I’m not, and sometimes my tics do show, but that’s OK. I know myself, and other’s negative opinions don't mean anything. My greatest talent is to ignore their comments and constant interruptions. I know myself better than anyone else and I know that I am awesome just the way I am. I want to spread the message that you can let your true self shine without having to worry about anyone else's thoughts. I want to educate people and build a more supportive community for kids and adults with Tourette Syndrome. I want kids with Tourette Syndrome to know that they don’t need to change themselves. Sometimes people who are not familiar with TS just don’t know how to react or respond, but we can help spread awareness and give ideas. Just because you have TS should not mean your life has to be slowed down or stopped. The world should know this and we should be able to live in a community without being asked constant questions. I am a leader, a survivor, a hard worker, an advocate, and an adventurer, and I am living proof that having TS doesn't need to limit you.
"Joe is my name, and I have been living with tics for as long as I can remember. Officially diagnosed with Tourette syndrome at the age of 8, it was a relief to finally have a name for what I was experiencing. It was my 3rd-grade teacher, Miss Sciortino, who first noticed my tics. My parents took me to the doctor, who suggested I ignore them and that I would eventually outgrow them. Over the years, I have learned to mask my tics, a practice that is both exhausting and triggers my OCD, anxiety, and internal tics. However, I have found ways to cope, such as dancing and making jokes about my tics. In times of extreme stress or teasing, I have experienced cursing tics, although this is not a common occurrence for me. My tics have taken a toll on my stomach and muscles, often causing discomfort and pain. Despite these challenges, I have come to accept my tics and have learned not to let them hold me back. I hum, grunt, and make various noises, but I have embraced who I am. My disability does not define me, and I refuse to let it hinder my life or ambitions. I’m so much more than Tourette’s but it’s part of me and makes me have this superpower where I’m capable of so much more because of it! I have found strength and resilience in my journey, pushing myself to excel in everything I do.
I have undergone Cognitive Behavioral Intervention for Tics (CBIT), which has been incredibly beneficial in managing my tics. The best thing so far has been being involved with the Tourette Association where I’ve shared my story on a stage in front of people, found a group of people I can be myself with and recently became a Jr. Youth ambassador! "
"Hi! My name is Molly. I am in marching band, theater, and a competitive swimmer. I am very involved in my school honor societies and clubs, as well as being an honor roll and full IB student.
I was officially diagnosed with Tourette Syndrome when I was in 6th grade, but I have exhibited pretty noticeable tics since around preschool.
When I was 4, I was diagnosed with a tic disorder with just vocal tics, as well as generalized anxiety. I had a humming tic that was called “disruptive” to my preschool class, but I didn’t even notice it or know I had a tic disorder.
My motor tics started around 4th grade. I had lots of noticeable eye tics and neck tics. I didn't notice it was happening, and this probably went on for about a year before anyone else started noticing. In 5th grade friends, teachers, and peers would yell at me for my tics or laugh about them, and they only got worse from there.
As they got worse through the next year, more and more people would look at me and ask, “Why did you just wink at me” or, “Why are you jerking your neck around.” Teachers would often confront me and ask if anything was wrong, and I would get defensive because I didn’t think I was doing anything. Even some of my friends started to turn against me or distance themselves because they thought I was weird. In 6th grade, we did a science unit on how the brain works, as well as learning about neurodevelopmental disorders like Tourette syndrome. I got very interested in it and I decided to research more about it. My family and I concluded that I probably had Tourette Syndrome, and I got diagnosed a few months later.
Right around the time I was diagnosed, my tics got really bad. Some of my motor tics started to cause me pain and impact my ability to swim or do anything without my neck and shoulders being in extreme pain.
We were given the options of medication or CBIT, we decided to go through with CBIT, and I did CBIT through virtual meetings for a few months. This worked wonders for my Tourette and really helped me gain courage in feeling like I could “control” what was said to be involuntary. This gave me confidence and drastically improved my life.
But when I entered high school, everything got 100x more stressful, I had marching band and swimming flooding my schedule, as well as plays, concerts, and tons of homework. My mental health plummeted, and I developed a bunch of new tics. For a while I was so stressed that I forgot about all CBIT, and my brain and tics went into overdrive. It felt like my brain had short-circuited. We decided that I might need to find another option that could help me without causing me more stress. I started on medication in the past year and it has been going incredibly well. I can focus on school, marching band, and life, without (as many) tics.
Through this rough experience in the past year, I pushed myself to learn as much as I could about Tourette so I could understand and explain it to my peers. This helped me cope with Tourette a lot because I was giving myself closure in a sort of way.
At the start of the year, we did a school-wide individual project, and I chose the topic of Tourette syndrome intending to help people learn about it.
Learning more about my disability, and about the science behind it, led me to publish a website about Tourette syndrome. This inspired me to become a Youth Ambassador for the Tourette Association of America, to help people understand Tourette and help friends, peers, or students who are living with Tourette."
"Tourette Syndrome affects my entire family and can be extremely hard to handle. I have five siblings who have Tourette as well as my mom. When my mom was younger there was very little information on Tourette Syndrome. She wasn’t diagnosed until she was an adult. My mom struggled for years due to the lack of information on Tourette. Sometimes it can be hard to handle my everyday life. My family and I each struggle with many of the co-existing conditions of Tourette such as anxiety, OCD, ADHD, sensory and auditory processing disorder, learning disorders, and autism. Our house tends to be very loud and high-strung. For example, if someone is ticcing and another family member is near, they may also start ticcing. Our tics feed off each other. It can be hard to focus on school due to ticcing to the point that I can’t focus. I started having tics when I was little, but they got worse when I was ten. I was hospitalized three times due to debilitating pain, some of which came from the severe popping of all of my hypermobile joints. This is a tic I still struggle with, but not nearly as bad. One of the hardest things for me when it comes to Tourette, is that the majority of tics I have can lead to future injuries. The same goes with my family. It can be debilitating in a way where I can’t stop and it gets so hard to focus on anything other than my tics. Art is the main tool I use to distract myself from ticcing. Singing, writing, music, roller skating, running, and drawing are all distractions from my tics. Relaxing can feel impossible and takes more effort for us than for most people. Going to sleep is very difficult for me. My mind races and all I can think about are worries that go through my head. This causes my tics to act up and it starts a cycle of trying to relax, non-stop worrying because I need to relax, ticcing because of the worries, pain because of the tics, and then not sleeping because the pain makes it hard to go to sleep. I have people (family, doctors, therapists) who have helped me with ways, such as CBIT therapy, to accept my tics and change my tics into
something that doesn’t cause me pain. CBIT therapy doesn’t get rid of tics; it just replaces tics with other movements that don’t cause me pain. My previous CBIT therapist moved away and now I don’t have anyone to help me work on my popping tics. To get support, we have to drive 45 minutes to an hour for therapies. We don’t have much therapeutic and medical help for Tourette in our area. A lot of times we use telehealth because there are no resources close. Soon, because of telehealth, I will be able to get CBIT virtually from an Occupational Therapist four hours away. Worries, anxiety, and stress cause my tics to start acting up. Distracting myself is one of the most helpful things I can do because then I don’t think about my tics as much. When I’m going through something difficult or have a lot on my mind, my tics and anxiety get worse. When my grandfather passed away, my tics were severe. All day I was ticcing. I have a lot of different tics, including motor tics such as popping my joints and eye-rolling, and vocal tics such as humming or throat clearing. It can be embarrassing when I am in public. Over the years, I have had many people look at me strangely because of my tics. Most likely they don’t know that what I am doing is because I have Tourette Syndrome. When my brother was a kid, he got made fun of because of his tics and he tried to hide them. This only made them worse and created more stress for him. After going to a camp for kids with Tourette, he stopped trying to hide his tics and was no longer embarrassed by them. One thing I have learned over the years is not to care what other people think about my tics. This is who I am. I want to help others feel confident while having Tourette Syndrome. I want to help others not be embarrassed by it, because I was for quite a while. There have been many times when I tried to explain Tourette to people, but I felt misunderstood. I remember telling my friend that I had Tourette. At the time, I didn’t know how to explain it. I did my best and then she just asked, “So you have tics?” and I said, “Yes, but the thing is that Tourette usually causes other problems such as anxiety, OCD, sleep issues, attention issues and even learning issues.” I felt like she still didn’t understand, so I was determined to try to explain it better next time. The main thing that people tend to assume is that tics are something I can stop if I want to. They are something I can’t control. When I first heard about the Youth Ambassador Program, I saw it as a chance to inform others about Tourette Syndrome. Not a lot of people know what Tourette is or understand it. People who do know what it is will often have a misconception that it's just tics. Tourette Syndrome affects people daily and ‘tics are just the tip of the iceberg.’ When I was selected to be a Youth Ambassador and started learning more about Tourette, I found my desire growing to educate people about the coexisting struggles that come with the tics. I can’t stop my tics and the issues that come with them, but with therapies and support from others, I can live day to day without such a struggle even though some days are harder than others. I have dealt with Tourette for many years so I know from experience just how hard it is to cope with. It can be exhausting, frustrating, annoying, and even painful. I have seen firsthand how tics can differ from person to person in my own family. Above all, no matter how hard or stressful things get, Tourette Syndrome does not define me as a person and I will never let it stop me from achieving my goals and dreams in life."
"For as long as I can remember, things have been more difficult for me than for the average kid. Before I discovered I had Tourette Syndrome and what it is, I was always frustrated when I would stutter or have difficulty writing. The tics only progressed, becoming more complex and harder to control but I didn't give up; instead, over time, I have learned to manage them better. To this day, I still struggle with tics, but now they have become a part of everyday life, just another challenge I can overcome. Now that my tics are more pronounced, people always come up to me at school or just out in town and ask if I'm okay or what's wrong with me, but instead of getting annoyed or upset, I've found that I look forward to people asking. I love telling people about TS because the more you know about something, the less alien it seems. I have always had an affinity for public speaking, so each interaction with someone asking makes the next one better and better. Sometimes people don't react well, and they
are still concerned, or they don't understand, but regardless of their reaction, I have never failed to notice the impact it brings to tell them. I think that if people knew more about TS, it could help the people who have to deal with it daily and the people in their lives. Everyone needs a voice; unfortunately, TS doesn't have a loud enough voice to reach enough people. Now that I have become a Rising Leader with the TAA I have the opportunity to build that voice to help create the change I want to see in the world. The more people we can reach, the more people with TS can say, "They're just like me", and feel they aren't alone. I want to teach as many people as possible about TS so that they can not only help others but also so that they can hopefully do the same. My life has been an uphill climb, and I never back down when it tries to throw me off, and believe me, it has, so I want to stick with this, hopefully even traveling to other areas within the next few years. There are many people out there, and I want to use my gift to help just that tiny amount that I can.”
"My name is Sam Turner, and I was diagnosed with Tourette Syndrome, alongside other disorders, when I was 10 years old. I was diagnosed by a neurologist, and then later diagnosed with Generalized Anxiety Disorder. I now have diagnoses of FND, ADHD, and depression. My tics blew up after getting diagnosed. I had had years of suppression and anxiety built up that I finally felt like I could release. However, as I’ve grown and gotten on different meds, my tics have greatly decreased. For example, I can now go hours without ticcing. When I was younger, I would have constant tic attacks and I rarely have them now. As someone with Tourette, I have had many interesting experiences. There have been times I’ve been yelled at for my tics, scolded in public, etc. It has scarred me a little and caused me to suppress my tics even more. Due to this, I’ve been working on becoming more comfortable with my tics. I feel like I’ve regressed more since I’ve had those experiences.
I started doing advocacy after going to Camp Twitch and Shout, a Tourette camp in Georgia. I decided I wanted to educate others on my tics, and I started a YouTube channel. I now mainly do advocacy on Instagram. I love being a part of the Tourette’s community and helping educate others on such a gravely misunderstood condition. I am proud of how far I’ve gotten, but I still have a lot of work to do from the state I reversed to. I’m so grateful for my community and organizations such as this one, who help to spread awareness and improve the community."
"Hi! My name is Jule and I am 15 years old, and I have been professionally diagnosed with Tourette syndrome as well as its comorbidities since June 2021. I was diagnosed with Tourette Syndrome at age 12 after a flare-up of tics that I had when I was 10 years old, but my tics have been present for as long as I can remember. My experience with my tics has varied from relaxing times where I don’t tic much, to days where I can’t walk or do so much as form a sentence without being interrupted by myself. My Tourettes has impacted my life in many ways, positive and negative. I have made so many friends through support groups, camps, and advocacy programs. It has also cost me some friends and gotten me made fun of. Even though my Tourettes has cost me a lot, I wouldn’t change having it if I had the chance. My Tourettes has taught me patience, empathy, and how to stand up and advocate for myself. My Tourettes diagnosis has also given me many opportunities. It has allowed me to go places I never could’ve gone, do things I never would’ve done, and meet amazing people that I never would’ve met without my diagnosis."
“I was diagnosed with Tourette’s Syndrome at the ripe age of 4 years old. As a child, my sister was the only other person I knew with TS. In the years growing up, I learned very quickly that TS brought unwanted negative attention crashing down on me, so I learned to suppress my tics. This ultimately resulted in me hiding my diagnosis from everybody I knew, thinking it was the only option to make friends. Self-hatred gripped my soul and the ever-lasting question of ‘why me?’ penetrated my brain repeatedly. I remember the aching familiar feeling of loneliness when others were accepted environmentally and introspectively, and I yearned to experience that.
The first I heard of any activity with others that had TS was a place called “Camp Twitch and Shout”. I laughed at the idea, and immediately declined, burying that little part of interest deep inside me.
Later that year I did a study analyzing the effects of school environments on teens with TS anxiety and self-esteem in my AP Research class. Part of the experiment required me to conduct Zoom interviews, and during one of my interviews I was listening to a girl describe her experience with TS at school and I found myself imagining the possibility of others out there like me who dealt with similar things. This girl was the first person I had ever spoken to besides my sister who had TS. I ended the call and immediately started researching the camp. I ended up changing my mind.
Attending Camp Twitch and Shout turned my life around. A few months prior, I was headed down a dark path and set out to make myself better - physically, mentally, emotionally, and spiritually. At first, I was dreading the experience a bit because I deeply feared being left out, but it was the opposite. When I went to camp, I found myself immersed in the best accepting, fun, and positive environment I had ever experienced; that I didn’t think was possible. I made lifetime friends, shared experiences, and felt truly understood the first time. Individuals there cared so deeply and weren’t afraid to do silly things. I left camp refreshed, with the knowledge that that day on I didn’t have to hide my TS and mental health any longer. This enabled me to fully accept myself, and I strived to share my story to aid others to accept themselves too.
When I heard I was accepted as a 2023 Tourette Youth Ambassador, I was beyond thrilled to achieve the dream that I gained throughout my life experiences. I began developing aspirations:
To build and surround myself with a community that promotes the welfare and general education of TS.·
Sharing my transformation from hiding to embracing my TS. As a past representative of individuals who ran from their disorder, this would enable me to aid others who are still hiding to light, while
simultaneously healing a part of myself in the process. If there was one thing I would want individuals to learn about TS it would be that teens with TS are so much more than their disorder and struggles. Their diagnosis doesn’t define them.
Expressing the criticalness of education around the disorder. So much of the shame felt by individuals with TS stems from the stigma and misinformation of TS - whether caused by social media or false rumors derived from lack of knowledge. I believe that if individuals knew the behind-the-scenes of a life story rather than just a clinical definition, understanding would be abundant.
I plan to major in Clinical psychology next year to research the many facets of Tourette’s in order to improve the lives of individuals living with the disorder.”
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