Would you like to share your TS story? If so, please send a private message to my Facebook page or send me an e-mail at firstname.lastname@example.org. Please answer these questions (by either typing them out or videotaping) and send a picture or two to go with it! Then I will post your story on this page!
Q: What is your name and how old are you?
A: My name is Jackie, I’m 20 years old, and I’m a Junior in college.
Q: How long have you had Tourette Syndrome?
A: I’ve had Tourette Syndrome since I was 3 years old. I was misdiagnosed for a long time though and for that reason I wasn’t officially diagnosed by a neurologist until I was 17.
Q: What kinds of tics do you have?
A: I’ve had to many types of tics over the years, but right now some of my tics are facial grimacing, blinking, rolling my eyes, head jerking, punching my arms outward, hitting objects around me with my hand, sniffing, coughing, and high pitched noises.
Q: Do you have any associated conditions?
A: I have OCD, anxiety, and sensory processing issues.
Q: What is life like for you living with Tourette Syndrome?
A: Living with Tourette’s has it’s challenges. I wake up every morning knowing that I will move through may day jerking my head, rolling my eyes, hitting , and making noises among many other things, but this is my normal. When it relly comes down to it , Tourette’s has given me so much more than it has taken from me. It has given me an amazing community of people who I will never take for granted. I would have never met my amazing camp twitch and shout family, the people who I do research with, or my Tourette’s Syndrome Association friends if I didn’t have TS. Tourette’s has also given me confidence. I don’t mind explaining or answering questions and I love educating people about TS. In fact i’m going to be educating 200-400 medical school students about Tourette’s in September! Having Tourette’s is a unique experience and the opportunities that have come from having TS have enriched my life more than I would have ever known. Like one of the nurses from camp twitch and shout said “people with Tourettes are not the ones that are disabled in our society, it is the “normal” people that are handicapped in the depth and beauty of life.”
Q: What advice can you give others who are newly diagnosed with Tourette Syndrome?
A: As a person with Tourette’s, you can do anything that anyone else can do. Ever since I was little, I was told “you can do anything you set your mind to”. I took that message to heart. Even though you have tics, you should never use the word “can’t”. You should never let your Tourette’s be a reason you can’t do something. You might have to do things a little differently sometimes, but you can still succeed and do everything you want to.
Q: What do you think other people should know about Tourette Syndrome?
A: You should treat people with Tourette’s just like you would treat anyone else. Most of the time, I feel pretty darn normal, so that’s how I want you to treat me. I go to classes, hang out with my friends, go out to eat, and live in the dorms just like every other college student. I might twitch a bit more along the way, but i’m just as smart, just as capable, and just as motivated as any other person. I won’t let me tics get in my way or stop me from doing the things I love. A lot of the time, I forget I have Tourette’s and I just go about my day like anyone else. When people treat me any differently it surprises me. I don’t feel impaired in any way. I might be different, but everyone is different in one way or another.. being different is normal.
Q: What are your strengths and what do you like to do?
A: I am fascinated with neuroscience and am passionate about brain research. My college major is Philosophy-Neuroscience-Psychology (PNP) with a focus in Cognitive Neuroscience and I’m a research assistant in two labs at the medical school associated with my university. One of the labs I do research with is a lab that focuses on Tourette Syndrome and last year I conducted my first independent research study. My study focused on the sensory processing issues that many people with Tourette Syndrome have and I now have two research publications on this study. This year I’m going to continue to work towards more findings and publications.
Q: What are your goals in life?
A: Next year I’m going to be applying to PhD programs. I would love to get my PhD in either Clinical Psychology or Cognitive Neuroscience. My goal is to one day have my own lab that focuses on Tourette Syndrome research and to make a difference in the lives of others