Tics, Grunts, Life… 2nd time around
This is something I posted awhile back. I wanted to talk about it again. I saw on t.v the other day that someone was, once again, making fun of a serious disorder. I’m not ok with that.
I have Tourette’s Syndrome. TS is a neurological disorder that becomes evident in early childhood or adolescence. TS is defined by multiple motor and vocal tics. The first symptoms usually are involuntary movements (tics) of the face, arms, and limbs. These tics are frequent, repetitive and rapid. The most common first symptom is a facial tic (eye blink, nose twitch, grimace), and is replaced or added to by other tics of the neck and limbs.
Some involuntary tics may be complicated, involving the entire body, such as kicking and stamping. It’s as if I the urge to perform a motor activity. Other symptoms such as touching, repetitive thoughts and movements and compulsions can occur. There are also verbal tics. These vocalizations include grunting, throat clearing, shouting and barking. The verbal tics may also be expressed with the involuntary use of obscene words or obscene gestures. Despite what you hear, this is fairly uncommon.
People with Tourette’s usually also have a form of depression, ADD, ADHD, and OCD.
Now, I am going to tell you how TS affects me. For as long as I can remember, I have had facial tics and grunting. Now, at the age of 35, I am able to hide these things from most people. If you spend enough time with me you might see me twitch or hear me grunt and not realize what I am doing. When I am really stressed or really comfortable with my surroundings my tics and grunts get louder. When I am with my family I do it freely and do not try to cover it up. They act like there is nothing wrong and don’t even acknowledge that I am doing them. When I am somewhere that I need to hide it, the tension builds. It actually hurts when I try to hold it in. When I am finally able to release them it takes a while for them to stop.
When I first met my husband he thought I was laughing or clearing my throat. People ask me all the time what I laughing about. I just say nothing and move on. When I have a twitch I can’t avoid, I cover my mouth, eyes or nose so that no one sees it.
I see a lot of people on tv and other media outlets that think its funny to make TS look like it’s an awful disease. I have actually had someone respond to me before when I told them I had TS “When are you going to start cursing and throwing things” I really wish people would take the time to learn more about it.
I have chosen not to take any medicine to help control the twitches. My symptoms aren’t as bad as many. I believe the depression linked to Tourette’s is a bigger battle for me. My family accepts me for the way I am. There was a guy on American Idol this past season who had TS. When I saw him twitch on TV with no care in the world about it, it gave me hope.
The most important thing I have learned is : I have Tourette’s syndrome. Tourette’s syndrome doesn’t have me.