About Tourette Syndrome: A First-hand Account

A Personal Definition of Tourette Syndrome

by Sutie Madison

Tourette Syndrome, also referred to as Tourettes or TS, is a neurological disorder characterized by the combination of both vocal and motor tics lasting for at least one year. The onset of Tourettes usually occurs between the ages of 6 and 10 and is three times more likely to occur in males. Vocal or verbal tics include repetitive throat clearing, grunting, barking, shouting and almost any other organic sound that can orally be produced. Motor tics are kinetic and erratic in nature and are most often defined as quick jerk-like movements. Motor tics include eye blinking, eye rolling, facial stretching, head jerking, neck twisting, arm flailing, trunk bending, stomach convulsions, jumping and numerous others that can be very individualized from person to person.

As Tourettes develops in a person over time, these motor tics can become quite complex and performed in particular orders and combinations becoming compulsive routines. It is important to understand that TS is not just a set of tics that come out of a person unconsciously. There is a strong psychological component that also fuels this disorder.

I can’t speak for everyone with Tourettes, but from my personal experience, there’s a constant urge (like a nagging voice) in my body sending these messages that I won’t feel “ok” unless I move my body in a very specific way. The real dinger is that even when I satisfy the urge there’s always another one right behind it. It is a never-ending cycle! It’s no wonder I have trouble focusing on mundane tasks.

Another important distinction of Tourette Syndrome that most people aren’t aware of is the difference between the urge and the tic. The URGE to tic is involuntary but the actual tics themselves are not entirely uncontrollable. People sometimes use the example of having a really annoying and intense itch that only scratching can relieve. The itch is involuntary but technically you do not have to scratch it. With that being said, it is extremely difficult if not almost impossible for a person with Tourettes to not “scratch that itch.”

Although most of the time, I allow myself to tic proudly without a sense of shame, there are still those social occasions where I don’t want to call attention to myself so I sometimes will find myself creating alternative tics that will hopefully be less noticeable in the public eye.

For me, the most pervasive part of having TS is the inherent form of self-destruction it produces. My tics can be very uncomfortable, disorienting and even painful but in a way, I am still choosing to satisfy the urge.  Additionally, the thoughts that accompany the tics can be equally disturbing. Some people experience the urge to touch other people inappropriately or do something completely dangerous or even life threatening. The physiological component produces a lot of anxiety for me because I feel like I don’t always have my best interest at heart. There’s a certain element of “playing with danger” that seems to be a common thread among people with Tourettes.

For me, the most pervasive part of having TS is the inherent form of self-destruction it produces. My tics can be very uncomfortable, disorienting and even painful but in a way, I am still choosing to satisfy the urge.  Additionally, the thoughts that accompany the tics can be equally disturbing. Some people experience the urge to touch other people inappropriately or do something completely dangerous or even life threatening. The physiological component produces a lot of anxiety for me because I feel like I don’t always have my best interest at heart. There’s a certain element of “playing with danger” that seems to be a common thread among people with Tourettes.

When researching Tourette Syndrome, it is crucial to include the emotional and physiological elements of this disorder because these are often overlooked in favor of the more obvious physical manifestations.

Tourette Syndrome is usually adjoined with Obsessive Compulsive Disorder (OCD) as well as Attention Deficit Disorder (ADD) or Attention Deficit Hyperactivity Disorder (ADHD). The combination of these three disorders is a force to be reckoned with and having TS myself, I should know!

The most commonly stereotyped manifestation of TS is called Coprolalia. This form of Tourettes is known as the “swearing syndrome”. Coprolalia is the term used to describe vocal tics that include obscene or socially inappropriate words and phrases. This specific type of Tourettes plays a small role in the overall population of those afflicted. Although Coprolalia is fairly uncommon, ironically, it has become the hallmark of Tourette Syndrome throughout commercial media leaving people with TS short-changed and misrepresented.

Although Tourettes syndrome is often physically and psychologically taxing, there are some inherent benefits that can be yielded from this disorder. Many people with Tourettes have an abundant amount of creative energy and coordination making for excellent artists and athletes with generous amounts of compassion and humor to boot. With adequate support and fostering, a person with Tourettes is quite capable of excelling at whatever field they choose to occupy. The explanation and research behind this phenomenon is not yet complete but there are numerous new speculations all leading to this conclusion.

When I’m engaged in an activity that truly stimulates my mind, I find that my tics are greatly reduced. When I am choreographing with Band of Artists I barely tic at all because I feel fulfilled and connected. The funny part is that the choreography is based off of actual tics! I suppose that is a perfect example of how one can use their greatest challenge to their advantage inventing new philosophies and hopefully inspiring others to do the same.

For more on Tourette Syndrome please visit The National Tourettes Foundation at:
http://www.tsa-usa.org/aMedical/whatists.html

Watch the acclaimed Oliver Sacks’ documentary on Tourettes or see a list of some common tics.