Tourette Syndrome is one of those frustrating conditions which is not well understood and is widely misrepresented. If you ask most people what they know about Tourette Syndrome, the most likely answer is Uh, whats that?. But there are a couple of things that are infamous, and a few that are just wrong. So lets clear these up first.
Coprolalia
The Marquise de Dampierre, the eternal example of Tourette Syndrome swore uncontrollably and it seems that most people have read this case study. To the general population, if you have Tourettes, you swear. This is not true on so many levels. Firstly, Coprolalia is more than swearing. Literally "s**t talking", it is speaking socially inappropriate words because of a compulsion to do so. It is not always swear words, it is not always directed at anyone else, and the person most shocked is the poor Touretter himself. Secondly, coprolalia is an extreme tic. Latest research shows that only 8% of total Tourette sufferers exhibit coprolalia. Thats a tiny amount! But this doesnt stop obnoxious people. It has become the rebellious thing to do to claim to enjoy pretending you have Tourettes.
It frightens me how well known this symptom is. Nowadays, if I ever have to explain my tics to someone, and they dont know what Tourettes is, I say The one where you swear all the time. I havent met a person yet who's said I still dont know what you're talking about.
It's a mental illness
In Gilles de la Tourette's days, Tourette's was not a syndrome, it was an illness. The definition may seem trivial, but its not. The easiest way I can define the difference is that in an illness you treat the illness so that it goes away; while in a syndrome you treat the symptoms so they are manageable. While Tourette Syndrome often disappears during adolescence, that is probably due to a physical change in the brain and body brought on by hormones. In depression (for example) a change in attitude and lifestyle is the most important part of recovery, but in Tourette's, changing attitude doesn't really help. And although lifestyle changes can reduce stress, fatigue and boredom, which are major sources of tics, it only really helps the symptoms, not the problem. Tourette's cannot be cured
yet.
Officially, Tourette Syndrome is a "neurological disorder". That is, it is a problem with the neurons that make up the brain.
Hes/She's just a troublemaker
School teachers know surprisingly little about Tourette syndrome. Sometimes I wonder if it's because they dont want to make the effort to know. I have talked to some parents who have gone to their school armed with pamphlets and videos and willing to talk to teachers, and have been spectacularly ignored. These teachers prefer to label the Touretters as "bad kids" and not try to help them. Tourette sufferers are not necessarliy bad kids. Many tics can cause major disruptions in small classrooms: the tics can cause concentration problems and some Touretters have learning disabilities such as ADD, ADHD, or Autism. In most cases the children are trying their hearts out!
This happens a lot in Doctors surgeries. So much so that it has been dubbed
"Doctor's office syndrome" or "Doctor's room
syndrome". The patient will be nervous and will know the doctor is looking for any strange movements. They will then suppress them without thinking. The Doctor, not seeing any movements will ignore all previous diagnoses and the testimony of you and your family and friends, and will pronounce you perfectly alright. Dont believe a word of it. If you know you have tics, and others know you have tics: you have tics. It can be a real scrape to your ego to be told youre making it all up.
It took 5 different doctors for me to finally get my diagnosis, and once I had it I could feel normal because I wasnt the only one. Then my doctor went overseas and I had to see someone else. The new Doctor did the "I cant see the tics, so you cant have Tourettes" to me. I left the office, burst into tears and had the worst bout of tics Id ever had. I havent hated many people in my lifebut he was one of them.
If you can control them, then they're not involuntary
I get this from people a lot. Yes, we can control tics, but only
for a short while. Then we have to let them out; usually in a worse bout than if we had just let them out in the first place. I like the analogy of holding a heavy box at arms length. You can drop it straight away, or you can hold it out there for a little while. If you hold it, eventually it's too heavy and you have to drop it, and when you do, your arms are sorer than if you'd just dropped it straight away. The tics are still involuntary;
we do not cause them, but it is possible to tell when were about to do one. This is why we can control them, we feel them coming and we tell ourselves not to. With the box analogy, its as if the box is sitting on a shelf while you hold it. Suddenly, the screws begin to pull out of the shelf, and you can see that the box will fall. So you brace yourself and, when the shelf gives way, youre holding the box and it doesn't fall.
For a while. See?
Its degenerative
Georges Gilles de la Tourette himself believed that Tourette syndrome was a progressive disease, starting with small facial tics and progressing to coprolalia.
Its not. Over time there will be different tics, the severity will wax and wane. From the moment you first get tics they may get a little worse for a while as your Tourette's announces itself. But just having a grunting tic or teeth grinding does not mean you will end up with a severe case of Tourette syndrome. In fact, many people grow out of Tourettes during adolescence.