by Matthew D '19

Twitch and Shout: Living With Tourette Syndrome

Not many people are aware of a condition that they may have noticed in somebody they have met. It is called Tourette syndrome (TS), named after the person who discovered the disorder. The National Institute of Neurological Disorders and Strokes defines Tourette syndrome as “a neurological disorder characterized by repetitive, stereotyped, involuntary movements and vocalizations called tics.” It is fairly common, with over 200,000 cases per year in the United States.

As somebody who happens to be close to a person with mild Tourette’s, I found it disturbing that almost none of the people I talk to on a daily basis know what Tourette syndrome is.

Of course, many parents, at least at first, don’t understand what is happening to their child. “The first time that I saw the change was when my child was about 9 years old,” the mother of the child with TS says. “People reacted by asking questions and staring at my child. I always explained why they behaved in that way, so that they would be able to understand it better.” Later on, she shares, “I felt confused, but satisfied that we finally had a diagnosis for the problem.”

Tics get worse if a person is stressed, so it’s essential for a person with Tourette’s to try and relax when they are feeling overwhelmed. Also, males are affected by the disorder 3 to 5 times more often than females. People with Tourette syndrome often have other irregularities along with it. The Center for Disease Control and Prevention describes, “86% of people with Tourette’s have also been diagnosed with an additional mental, behavioral, or developmental condition.”

It is important to understand why somebody with Tourette’s does unexpected things. Mayo Clinic describes the sensation well. “Before the onset of motor or vocal tics, you’ll likely experience an uncomfortable bodily sensation (premonitory urge) such as an itch, a tingle or tension. Expression of the tic brings relief. With great effort, some people with Tourette syndrome can temporarily stop or hold back a tic.” However, even if tics are held back by somebody with Tourette’s, when they are free to express themselves, then the tics come out even stronger. The best way that this urge can be explained is trying to hold back a sneeze, since you can try and stop it, but it comes back anyway.

Tics can be simple or complex. Involuntary muscle movements, like blinking and shrugging shoulders repeatedly, are considered to be simple tics. On the other hand, complex tics include hopping and even bending or twisting so far that it is possible for somebody to unintentionally harm themselves. All of the tics described above are considered to be motor tics.

The other kind of tics, vocal tics, are also divided into simple and complex groups. Grunting, throat clearing, and barking are considered as simple vocal tics, while blurting obscene words out of the blue and repeating words or phrases are considered as complex tics.

Sadly, people with Tourette’s often end up being angry and apprehensive, since many of the people around them may not be understanding of their condition. Even worse, there is no cure for Tourette syndrome, so if a person develops chronic tics, they are likely to have or exhibit them for years or even the remainder of their life.

A disturbing thing about Tourette syndrome is that its symptoms peak in the early teens, which is arguably the most awkward part of somebody’s life. Self-esteem is likely to suffer when somebody has Tourette’s as a result of the general lack of knowledge regarding the disorder, which can lead to depression and anxiety. Thankfully, Tourette syndrome symptoms usually become milder as somebody grows out of childhood.

The mother of the child with Tourette’s also discussed the effect of the syndrome on her child’s relationship to others. “My child was bullied very much, which was very stressful for them. They were very hurt and had a hard time making friends. Even some of the teachers did not believe that it was an actual condition,” she explains. “As a parent, you have to make sure that all of the teachers know what the diagnosis is and not to punish the child for their behavior.”

One of the only choices that most people with Tourette’s have is to take medications that block or lessen dopamine. According to Psychology Today, dopamine is “a neurotransmitter that helps control the brain’s reward and pleasure centers, and regulate movement and emotional responses… it enables us not only to see rewards but to take action to move toward them.” For obvious reasons, taking these kinds of drugs can lead to long-term consequences.

Therapy is another option. Behavior therapy aids in making it easier for people to resist tics by teaching them how to recognize a “sensation” and how to stop it from becoming irresistible. This is probably the safest type of treatment for Tourette’s.

Tourette’s is a serious condition that greatly affects many people. Living with TS is definitely a burden, but through various methods of treatment and education of family and friends, Tourette’s can become something that victims of the disorder are able to deal with. It’s very important that parents, physicians, and educational staff are aware of this irregularity so that they are able to help somebody with Tourette’s to get a diagnosis.  

“I felt helpless and muddled before the diagnosis,” concluded the mother. “But once I was able to find abundant amounts of resources and help in order to know what to do to help my child deal with it, it was much easier for all of us.”


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