The Truth about Tourette's
Story by Natalie Melendez | Design by Janae Harris
Billie Eilish made headlines in November 2018 when a YouTube video of her surfaced, displaying abnormal facial tics. Eilish set the record straight via Instagram and confessed that she has Tourette’s syndrome.
“I've just never wanted people to think of Tourette’s every time they think of me,” says Eilish. “I wasn’t planning on talking about this on here maybe ever, but it’s gotten to a point.”
For many generations, Tourette’s has been a heavily stigmatized neurological disorder. A lot of misinformation about Tourette’s has lead people to believe that it is a very debilitating disorder, involving extreme body movements and screaming curse words, according to the Children’s Hospital of Wisconsin.
What is Tourette’s?
Tourette’s Syndrome is a neurological disorder that causes a person to make repeated, involuntary movements or sounds, also known as ‘tics,’ according to the National Institute of Neurological Disorders and Stroke (NINDS). Examples of tics include repetitive blinking and clearing your throat continually. Some people may also blurt out words or phrases they do not intend to say.
Tourette’s syndrome could be attributed to low levels or an imbalance of chemical substances of dopamine, serotonin, and norepinephrine, according to NINDS. These are chemicals that help brain nerve cells work together. There is no known cure, however, medication can be used to treat symptoms of Tourette’s. According to the Tourette Association of America, though, many choose to not use medication because their symptoms do not really bother them.
Approximately 100,000 Americans have severe Tourette's symptoms, but more people have mild symptoms, according to WebMD. Symptoms of Tourette’s typically present themselves during childhood. Boys are more likely to develop Tourette’s than girls, according to NINDS, but their symptoms get better as they grow older. Some people can completely grow out of their Tourettes and no longer experience symptoms.
Simple Tics vs. Complex Tics
Though there are many types of tics that people can have, tics can range from being very mild to very severe. They are classified in two categories, according to NINDS: simple tics and complex tics.
Simple tics are sudden, short and repetitive movements which involve a small number of muscle groups, according to NINDS. NINDS also states that examples of simple motor tics can include, but are not limited to, eye blinking, facial grimacing, shoulder shrugging and head or shoulder jerking. Examples of simple vocal tics may include repetitive throat clearing, sniffing or grunting sounds.
“I used to hit my leg a lot,” says former PULSE Copy Editor Nikole Chumley. “I used to have to always raise my eyebrows. I just had to do it.”
Complex tics are distinct and regulated patterns of movements that involve multiple muscle groups, according to NINDS. Examples of complex motor tics can include, but are not limited to, facial grimacing with a head twist and a shoulder shrug, sniffing, touching objects, hopping, jumping, bending or twisting. However, complex motor tics can elevate to self-harm such as punching yourself.
“I have little shakes [in my hands],” says sophomore Film major Harrison Ferguson. “I have little shrieks or yelps.”
There are also complex vocal tics that can arise in someone who has Tourette’s. Examples of complex vocal tics may include throat-clearing, sniffing or snorting, grunting, barking, words or phrases, according to NINDS. The 10 to 15 percent of people who struggle with complex tics are the people who have coprolalia (muttering inappropriate words) and echolalia (repeating words and phrases of others).
Disorders Associated With Tourettes
When someone is diagnosed with Tourette’s, it is usually accompanied by a neurobehavioral disorder, as stated by NINDS. For many people, these neurobehavioral disorders can be more detrimental than the tics themselves. This can include Attention Deficit/Hyperactivity Disorder (ADHD), which is hyperactivity, inattention and impulsivity. This can also include problems with reading, writing, arithmetic and obsessive-compulsive disorder symptoms (intrusive thoughts and repetitive behaviors)..
Autism spectrum, learning disabilities, sleep disorders and depression can also be accompanied with Tourettes, according to NINDS.
“My Tourettes is comorbid with Aspergers syndrome and Autistic disorder,” says Ferguson. “I have had it my whole life. I used to go see a therapist for it, but I never thought much about it.”
Stigma
Movies, television and other forms of media portray people’s tics as being on the extreme side—screaming, rapid body movements and swearing. This portrayal of Tourette's has led many to believe that the small percentage of people who have coprolalia and echolalia tics represent everyone who has tourettes.
“Media portrays people with Tourette’s as screaming swear words in settings that you normally would not do that,” says Chumley. “Other people that I know who have Tourette’s don’t scream swear words. I never did.”
This stigma can cause someone with Tourette’s to feel shame. They may feel alienated and that they are not able to talk to anyone about their tourettes.
“It took a long time for me to be okay with having Tourettes,” says Eleanor Shapiro, one of the founders of the Tourette’s Association of America. “People can be really cruel and not understanding.”
People with Tourette’s can experience bullying, discrimination, and other negative connotations. “But you have to come to the point where you are able to separate yourself from Tourettes,” Shapiro says. “The realization that Tourette’s is not who you are, but a part of who you are is the first step to ending the stigma.”
How to End the Tourette’s Stigma
The following are tips on how to end the stigma with Tourette’s,
1. Begin embracing our Tourette’s
Becoming open and comfortable with the fact that you have Tourette’s not only lets people know how common it is, but how it is not really debilitating. If you see someone you know who has this disorder, you may realize that it is not what you see in movies or television. You may also learn that not everyone with Tourette’s lives differently than someone that doesn’t have it.
“Tourette’s doesn’t affect intelligence or anything,” says Ferguson. “It’s a part of you; it is nothing to be ashamed of.”
2. Educate others about Tourette’s
The stigma of Tourette’s exists partly because of the lack of information surrounding the disorder. A way to end the stigma is to inform people about it. Talking to others about Tourette’s, addressing bullying and talking to your professor or class about it are all great ways to start educating others. Similar to what Billie Eilish did, start by educating your peers through social media.
“I am a big fan of [Eilish], so for her to go onto social media and confirm that she does have Tourette’s educated me and made me realize how common it actually is,” says Jennifer Anderson, a junior science major. People who obtain a social media account have a platform to put their voice out there to be heard.
3. Coping and Managing Your Tourette’s
Learning to accept the fact that you have Tourette’s can also be a stepping stone in ending the stigma. “Having Tourette’s is something that you can’t change,” says Chumley. “It really doesn’t affect your life like how you think it does.”
A lot of people find comfort in support groups for Tourette’s. This is a great way to meet a lot of people who are in the same position as you and make you not feel as alienated. “If you feel like you are an outcast, you’re probably not. You probably do know people who have tourettes who can talk with you,” says Chumley.
Being diagnosed with Tourette’s may feel like your world has been turned upside down. It may feel like it is the end of the world and that your life will be totally different from what you envisioned it to be. Being informed, learning to adapt to your Tourette’s and being positive about it are not only surefire ways for you to realize the stigma of tourettes is not true, but it will make everyone else realize that as well. The stigma is just that—a stigma. It is misinformation and carries false, negative connotations.
“It is just like any other hidden disease,” says Chumley. “It doesn’t make you any less capable of living your life or doing what you want and achieving your goals. You are going to be good enough just the way you are.”
True/False Questions
Everyone with Tourettes blurts out offensive words (false)
People with Tourettes can control their tics if they really want to (false)
Boys are more likely to have tourettes than girls (true)
Tics can come and go, depending on stressors or excitement of life (true)
People with tourettes are not as intelligent as others (false)
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