Frequently Asked Questions:
You have what? What is Tourette’s Syndrome?
Tourettes Syndrome is a neurological disorder discovered by the French physician Georges Gilles de la Tourette. Fancy, eh? Tourettes Syndrome is characterized by Tics — involuntary, rapid, sudden movements, and it can also be vocal. People with Tourette syndrome have very little control over their actions because of how their brain works. I could explain in a scientific way, but because most of us aren’t scientists, I will just drop the scientific jargon. Basically, I have more brain chemicals in my brain than a person without Tourette’s does whether that’s dopamine or serotonin, hence the high energy level. Think of it as a sneeze. You can tell when it comes eventually the sneeze has to come out.
These tics occur nearly every day and multiple times each day for me.
Can Tourettes be cured?
It is not known what causes Tourette Syndrome and there is no cure (yet!), but symptoms can usually be managed with counseling, accommodations at school and medications (although, I personally choose not to take medications for personal health reasons). The symptoms are usually made worse when going through strong emotions or when emotions are imbalanced (ie: stressed, anxiety, excitement,. . .) , but they do usually get better with time, and are even outgrown by almost one third of children by adulthood.
So can you tell me a little more of your story? Were you born with it or was it onset late? What was it like growing up with it & daily life??
I am not sure if I was born with a oddly wired brain or not, but the first symptoms showed up when I was around 5 years old: strong eye blinking. I would have to close my eyes shut until I hear a strange rush in my ear and keep doing that. My dad is a doctor so he caught on quick. Throughout elementary and middle school, Tourette’s Syndrome (TS) became severe and prominently violent to the point where school was difficult and I was suicidal. In high school, academics and social life was a lot easier. There are some points in my life where my TS is not violent and not frequent at all. And some other times, it becomes unbearable mentally, physically, emotionally, and spiritually.
My feelings towards Tourette’s and my Tourette’s itself fluctuate. Although my TS has made me become a more compassionate, interdependent, proactive, and assertive person, I still wish I could not have it. There’s not a day in my life where I wish I had Tourette’s.
Dealing with people has been easier as I grew up with a strong support network. Every quarter or semester, I would tell my professors in advance about my TS, I would briefly explain to the bus drivers upon entering the bus, educate others who are curious, and challenge those who don’t want to listen. Sometimes, I feel like I’m too assertive. I almost feel like a bitch, but it’s better being or sounding like a mean bitch than being a push over. My TS helped me stand up for others who are struggling. It also helped me stand up for my own values that I own despite if the person has higher authority or if it’s a majority that thinks otherwise.
What kind of symptoms do you have?
You name it, I got it. I have both vocal and physical tics. I scream, yell, cuss, shout random words, twitch, jerk, shake, bite, lick, blink, ect.
Do you have Tourette’s (tics) in your sleep?
No, thank God! I’ve heard other people with Tourette’s who are not as fortunate though. I sleep soundly, therefore, if you were a light sleeper, slumber parties with me would be A OK! Except I’ve had dreams of having tics especially during nightmares where a bad guy chases me and I hide. I have an outbursts and there he or it finds me hiding in the bushes!
Does Tourette’s Syndrome affect your life?
Yes and No. I live my life pursuing whatever I am passionate about. Tourette’s is just an extra something to wake other people up when they fall asleep. Just kidding. Tourette’s is an extra something, like a surprise bag full of unexpected goodies (or not so goodies depending on how you look at it). Although, sometimes my tics may hinder my performance, I never let it stop me from keep going and eventually I get there. 😉
Does Tourette’s affect your intimate relationships?
Yes. Both negatively and positively. It adds spontaneity though and life goes on. I’ve been with my husband two plus years and we’ve known each other for 7 years.
Does your tics reflect what you are thinking that time?
Are you super awesome?
Yes and a little cocky.
Do you think having coprolalia has helped you at all? Meaning, has it emboldened you, or made it so you might be more able than other people to “not be afraid” to speak up? Do you ever wonder at people’s inability to speak up for themselves or express something? Do you feel like your outgoingness and coprolalia are intertwined? Does one affect the other? Does it push you to be more extroverted than you would prefer?
Keep in mind that coprolalia are tics where one says obscene, derogatory, or bad words. That is a very specific type of verbal tics. I would say yes, my verbal outbursts is a big part of me being more extroverted and social. It forced me to become a networking nut and a public speaker. It pushed me to my limit and challenged me to become a better advocate for myself and others. I’m glad I was easy to hang out with . My tics has helped me meet all sorts of people because they become intrigued by my neurological condition. So people either come up to me, or I come up to them, or I greet them with a smack and an apology. lol And from there on the conversation begins. Thanks for the great question, Dane!
Do you feel like people are ignoring your tics and/or Tourette’s? What do you mean by people acting as if Tourette’s doesn’t exist [or just ignoring it], how would that make tics worse [or exacerbate the tics], and how do you distinguish between denial vs. acceptance?
Ignoring my tics is fine. What I’m talking about is just merely tolerating someone with Tourette’s when one could get to know the person on a personal level and inquire by asking questions. Not only does it open an opportunity to make a new friend, but it also helps people educate themselves. This allows a person to become more open-minded and compassionate about other people differences.
Ignorance and mere tolerance can indirectly exacerbates the tics (especially for me) is because when one is educated about the symptom, they pass down the word, educating others and teaching them to really embrace the Tourette’s. This makes people with tourette’s, like me, feel more at peace and more relaxed knowing people around me really understand me, and not just tolerating the tics while maybe judging me inside their minds. I can sense when someone doesn’t accept me and the more I know someone is annoyed or irritated by my tics due to lack of understanding, my tics becomes worse. With my tics, I tend to do the opposite of what people want. So the more I know I shouldn’t, the more I do it. The more I know it’s ok to have tics, the fewer tics I have.
You can’t always distinguish denial versus acceptance from the get-go, but often times one can sense it. Hope that makes sense
I have Tourette’s and I find it totally scary to date. When’s the right time to bring it up? How do I meet someone who won’t judge me and think I’m crazy?
You just need to find a really good friend or person and if they accept you great! If they don’t it’s their lost. I understand how scary and hard it is not knowing what the other person’s thinking but as long as you’re open and honest them things should go ok. Those who mind don’t matter and those who matter don’t mind. The right time to bring it up is now. Don’t wait. Otherwise your tics will just be worse worrying about when to bring it up when you hang out with them. You’ll end up trying to suppress it more which all of us Touretters know, backfires
It feels like such a tormented existence! All my life I only wanted to be normal! I’ve even had religious people assume that it is a demonic possession or something. I try to explain that it is a medical nerve disorder, not a mental disorder, or spiritual possession. I’ve heard it all… It’s hard when I’m in the church community and so many people either think your disturbed spiritually or mentally… Any advice on this?
Thats why i stopped going to church. Ive tried so many churches its all been the same different day for me. Id suggest keep trying to find a new church if you are a church goer and don’t want to stop. Don’t let people stop you from worshipping God and having a relationship with him. Im not Christian per say, I was raised Buddhist, but thats my two cent. I go to church to volunteer but had to stop because people were continuously trying to convert me or “fix” me. Its like “let me be people!”