I recently had to do a report on a medical condition for my English Comp. and Research class. I chose Tourette’s because my son has struggled with it since he was 6 years old.  I have included the interview that I did with my son as part of this post, mostly as a way of helping you, the reader better understand this disorder.  I also found this video on You Tube, no, this is NOT my son, but I thought it my also be helpful.  This young man does have the coprolalia tic, which is swearing and/or uttering racial slurs, but the majority of Tourette’s suffers do not have this tic, in fact, only 10-15% of all Tourette’s sufferers have this tic.  Watch the video and read the interview if you would like to understand this disorder a little better.

The video is about 10 minutes, but worth watching.  Remember, Tourette’s is not a joke, nor should it be used to sell tickets at the box office in slap stick movies.  I hope you take away a little understanding and empathy from this post.

The following is an interview with my son who has lived with Tourette’s all his life.  This interview will give us some insight into the disorder and how it affects those afflicted with the disorder.  Hopefully, this will dispell some myths and give the reader a better understanding of this misunderstood affliction.

INTERVIEW:

Thank you Chris for agreeing to participate in this interview.  You have lived most of your life battling Tourette’s, can you tell us a little bit about your own personal experience with it? (eg. Symptoms, problems etc)

Tourette’s is an umbrella disorder, and can encompass many different co morbid symptoms such as OCD ADHD, depression and anxiety disorders. Anxiety and OCD have been the largest challenge for me, and managing them has been very difficult. In the past, my obsessions have been so bad that they turned into irrational fears that prevented me from functioning. The most severe of these symptoms happened when I was 16. I lost 40 pounds because I was afraid to eat. It happened again when I was 24. I lost 25 pounds that time around, but I was better prepared to deal with the symptoms. I sought treatment and went on a more regimented medication plan, and I’ve been pretty stable ever since. Its been easier as I got older.

The interesting part about tics is they are 100% controllable when necessary. However, trying to control them increases my anxiety levels, and stopping them for too long can become unbearable. It’s almost like each tic is a release of anxiety/tension that gets you through until the next one. If I’m paying attention to my body, I can stop them for as long as I can focus, but the amount of energy expended can be overwhelming.

At what age were your parents first aware that you might have this type of disorder?

I believe I was around 5 years old when I started showing signs of obsessive behavior and muscular tics.

At what age were you diagnosed?

I don’t recall the diagnosis as I have received so many different diagnoses throughout the years that’s its hard to remember specifically when I was told I had a form of Tourette’s. I believe I was 8 or 9.  My mom would remember better.

What types of motor tics did you have as a child and which ones were the most troublesome for you?

Most of my tics are motor. The most troublesome then (and now) are the tics relating to the muscles in my face. I grind my teeth and flex my nose, neck and ear muscles. These were troublesome in the sense that kids in school didn’t understand why I did this and thought there was something wrong with me. Ive gotten used to it over the years and can cover it up in social situations and in public.

What type(s) of vocal tics did you display?  Was swearing one of them?

The most pronounced vocal tic I have now is clearing my throat frequently, which only occurs during times of stress and anxiety. For the most part, my vocal tics have gone away. I have never had a swearing tic. When I was a kid I used to make sounds in my throat. I believe these went away when I realized that I was doing it and it wasn’t appropriate in public situations. I never had an issue with being disruptive in school with the sounds or during any kind of public function.

What other symptoms/disorders have you struggled with due to this disorder?  (OCD?  ADHD? Etc?)

Tourette’s is considered an umbrella disorder, so I have struggled with OCD, ADHD, anxiety, and depression. There is some disagreement between if Tourette’s is its own disorder that causes the other symptoms, or if Tourette’s is a form of OCD that manifests the other symptoms as a result. OCD is almost always co morbid with tics, so its hard to tell the difference between the 2. For me, OCD has been the most prevalent, mostly in the form of obsessions, with a smaller amount of compulsions.

What types of therapy’s and/or medications have you used for the disorder?  Did you find them to be helpful?

I’ve tried a variety of treatments and medications. I took several different types of Antidepressants and anti-anxiety meds with varying results. My tics are “minor” enough that I have never taken the heavier drugs that supposedly help with the symptoms. I don’t feel that the side effects of the medications outweigh the benefits. For now, I take a low dose of Celexa to manage the OCD. It gets me to a point where I can manage my symptoms via other methods such as diet and exercise

Do you feel like you were treated differently as a child because of the Tourette’s?  If yes, please explain.

I was only treated differently by people who noticed that I had tics. I did what I could to cover them up, but sometimes they were noticed. I used to lie about the reasons why I did it and was ashamed of it. I was treated differently in the sense that I didn’t fit in due to my emotional problems, so kids thought I was weird.

Do you feel you are treated differently as an adult because of Tourette’s?

Not really, most people don’t know that I have tics when I tell them, they just think im really animated (which I am) but I try to cover up tics with other things.

Did you have your family’s support in dealing with Tourette’s as you were growing up?

My family was always 100 percent supportive of me and did an amazing job at making me feel like I wasn’t alone. They were always supportive of me during the hard times. I think they mostly felt bad that they couldn’t do more to help me.

Do you think that having Tourette’s has made you a stronger person?

I think so, yes. It’s forced me to pay more attention to my body and try to find better ways of taking care of myself. Its given me a better perspective and I have a lot more empathy for other people with these types of disorders that I don’t think I would have if I didn’t experience it myself.

Did you attend college?  If yes, what type of degree(s) have you earned?  Do you feel it was more difficult for you as a direct result of Tourette’s?

Yes. I have a Bachelors Degree in Psychology. I chose Psychology as a way to better understand myself and others who have Tourette’s and OCD. College was very difficult for me due to my inability to focus. I’m surprised I even made it through. But my obsessive ness outweighed my focus problems and I was able to finish. Its funny how that worked out. My disorder was a hindrance to achievement, but it also helped me hone my focus and get it completed.

Are you employed?  If yes, what type of work do you do and for how long?  Has Tourette’s made it difficult for you to find and keep employment?

Yes. I currently work for a hospital as a Computer Systems Administrator. I’ve been there for almost 4 years and have been working in IT for 8 years total.  Tourette’s has made it very difficult to focus and function as times, but my perseverance and good work ethic have far outweighed the negative. My employers have always been accommodating and ive rarely had any problems with the disorder directly affecting my work.

As you have grown older and out of puberty, has Tourette’s gotten easier to deal with?  How have the symptoms changed?

Puberty was definitely the hardest period of my life. Every year that passes has been better and better. I learn newer strategies for managing my disorder every day. Sometimes I have flare-ups of symptoms, particularly during stressful periods or season changes. During these times, I have to remember that I have been through worse and that if I’m patient, it will pass. My tics have been less and less severe over the years, and im getting better at managing my symptoms. One of the most important changes that I have made is that I am more upfront with myself and others about my disorder, and being aware of it and accepting of it has made me feel less isolated and alone. I still have the urge to cover it up and hide it, but the compulsion gets less and less every year

Lastly, is there anything else that you would like to share about Tourette’s, are there any myth’s or misconceptions that you would like to clear up?

One of the big misconceptions about Tourette’s is that you have to have swearing problems to have Tourette’s. This is absolutely not true. Not everyone with Tourette’s swears uncontrollable. This is only one of many manifestations a tic can take.  A “tic” can also be a recurring thought that won’t go away, a fear of something that you know is irrational, but you worry anyway. It can be a muscle flex that you cant stop yourself doing, or it can be an odd behavior that you don’t know why you do, but do anyway to feel better. Tourettes is very closely tied to OCD, and Psychologists have different theories on which disorder is dominant to the other. There is so much variability, its hard to tell what is causing what. Tourette’s is more than just neuromuscular “tics” and swearing. Like an iceburg, only some of it is visible.

Thank you for you time in this interview.