We interrupt Around the Web in 80 days today to bring you a post from a dear friend of mine, Bethany. Enjoy!
"What's wrong?"
That has to be the question I hear most often, in one form or another. It usually floods me with all sorts of emotions that I hate. I wish that the written word could convey vocal inflections, because although "what's wrong?" may sound like an innocent question in print, it's the way those two words are said that is spirit-crushing sometimes. More often than not, actually. But that's also a common question that someone with Tourette Syndrome might ask themselves: "what is wrong with me?" I did. Quite often.
Before I was diagnosed with it in December of 2009 (though I showed signs of it since I was two years old), I didn't know what was wrong with me. I truly thought there was something weird about me because there were certain things I did that I couldn't seem to control. They were harmless, but they embarrassed me. You feel ashamed and inadequate. I knew I was different somehow. I tend to like attention, but an awkward stare isn't the kind I want. Every human being has a natural desire to be normal and fit in, and all I knew was that I didn't.
“…people with Tourette's uncontrollably shout obscenities”
First, let me dispel the tragic myth that people with Tourette's uncontrollably shout obscenities at the worst of times. This is a very common stereotype because they seem to be the only ones that get the press. Those are called "complex tics" and are actually rare. Don't even get me started on the "Tourette's Guy" videos that have gotten so popular. I saw only part of one episode before I was livid enough to stop it. He may be a jerk, but the true tragedy is the ignorance of those who think he's funny. Now, there certainly are those who are that deeply affected, but most cases are mild. I have a mild case of it, and quite honestly, I think I notice it more than anyone. It is noticeable, but in reality isn't not nearly as bad as it could be. Tourette's is a very wide spectrum when it comes to severity, much like autism is a spectrum. Some are very mildly affected by it (many people never even know they have it), and some are very disabled because of it.
WHAT IS TOURETTE SYNDROME?
Georges Albert Édouard Brutus Gilles de la Tourette (try saying that five times fast) was a French neuropsychiatrist who noticed these symptoms in a few patients, and was calling it "maladie des tics." Gilles de la Tourette's mentor and fellow neurologist, Jean-Martin Charcot, later renamed it "Gilles de la Tourette's illness." But let's face it: that's a mouthful. It's more commonly known today as "Tourette's."
Simply explained, Tourette Syndrome is a disorder of the nervous system and is characterized by repeated, uncontrolled motions and sounds, called tics. These do not come in episodes, but rather it is a constant. You will never see me "normal," for lack of a better word. I'm always ticking in one way or another, even if you don't notice it.
JUST A FEW FACTS
- It is typically characterized by multiple motor tics, and at least one vocal tic.
- Signs usually show up around age 2-8, and are their worst around age 12, but typically decrease in the teen years (some cases, like mine, continue into adulthood).
- Motor tics usually show up years earlier than vocal tics.
- Tourette's is not a sign of low intelligence. Not unlike autism, those with Tourette's commonly have a higher than normal intelligence. So, do not use tics as an indication of how well a child will perform in school, or interact with others.
- A diagnosis is nearly three times as likely for boys than girls.
- It is about twice as common in Whites than in Hispanics or Blacks.
- Among other things, insufficient oxygen or blood supply during birth is thought to possibly contribute to Tourette's (I was deprived of oxygen at birth).
- There are no brain or blood tests that can prove the disorder; it is generally diagnosed by symptoms and medical history.
- A person with Tourette Syndrome will probably also have ADD or ADHD and/or OCD (I have both).
TICS
These tics are not always called "involuntary," but instead are often called "unvoluntary." To call them involuntary would imply that you cannot control them at all, but that's actually not the case with a lot of Tourette's patients. Unless the disorder is very severe, most people can suppress the tics for a short period of time, but it is so unbelievably uncomfortable to do that. Take blinking for instance, because that's one of my tics-- I can concentrate on it and not blink incessantly. But while I'm doing that, the urge to blink is stronger than ever and it's so uncomfortable and difficult to keep my eyes open; almost like physically fighting back a huge monster. While making myself not blink, all I can think about is how badly I want to blink. Needless to say, I've never won a staring competition in my life, much to my frustration. (I've always wanted to win a staring contest!) It's hard to describe to someone who doesn't know firsthand, but it just doesn't feel "right" if you're not making these motions or sounds that, for some unknown reason, your brain is telling you that you need to make.
“That was the most miserable five seconds that I can remember…”
I was walking along the jogging track one day at the local park, and my face was just ticking away-- my eyes, my nose, my mouth. Probably no one else would have looked at me and cared, but I knew. There were a couple of people who were about to pass me going the opposite direction, and I didn't want them to see my tics, so I held them in until we passed each other. That was the most miserable five seconds that I can remember. As soon as we passed I had to just let loose; let it tic to relieve that stress of keeping it bottled in.
“I almost cried…”
I almost cried right there on the track, because that was the moment that I realized for sure that there was something bigger going on that I didn't understand. Thankfully, I am fascinated by all things neurological and psychiatric, so it doesn't scare me to learn about these things. It helps to try to understand yourself. So I did some research on it, because I didn't automatically assume that I had Tourette's (there are other tic disorders), and then I started analyzing myself and writing down all the things I was aware that I was doing. To give you an idea, my most common tics are as follows:
MOTOR TICS
- Excessive blinking/winking
- Twitching my nose (which I've been told is cute, praise God)
- Wrinkling my forehead/eyebrows
- Opening my eyes wide in fast succession
- Jerking my mouth (there are several different motions involved in that)
- Repetitive touching/tapping
- Moving my thumbs, wrists or ankles in circular motions
- Shrugging/jerking my shoulders
VOCAL TICS
I do not shout words or noises, I just make quiet noises to myself.
- Monotone humming
- A low, deep-throat grunt (no one else can hear it)
- Sniffing
- Coughing
- Throat clearing
These tics are made worse by stress (mine got much worse after I was robbed twice at work in November 2009), lack of sleep, or even just being more aware of them. I don't tic as much when I'm not thinking about it, and the more I worry about it and try to stop, the worse they get. Then that stresses me out, which also makes them worse. So, you can see the vicious cycle that has to be dealt with. It can be exhausting.
“But it's not all about the tics.”
One of the most frustrating aspects of the disorder is that there comes a time when it gets extraordinarily difficult to get along with all other people because you're "different" and they don't understand, and you start to feel your basic ability to control your behavior slowly slipping away. It's hard to keep yourself in line in all aspects of life, especially for children who seem to just be seen by adults as rebellious. But even for those who don't have strong cases of Tourette's, this is a common feeling across the board. There comes a time when you start to not recognize yourself, and that's a scary place to be. Structure and routine are important because unpredictability causes anxiety, which makes the tics worse. You want to feel safe and secure in your surroundings; to be able to see what's around the corner, so to speak. Can I adapt to new situations? Absolutely. I do it all the time. But it takes work. It's not fun. I have never been a thrill-seeker, but rather have always been a quiet observer, which makes perfect sense to me now. I am the kind who color-codes my day planner and thrives on structure. That's the OCD showing; the need to feel in control of something... anything.
