I'm not agreeing with you, I've just got Tourette's

The worst thing about having Tourette’s Syndrome is not the fact that I have to nod my head, clear my throat, sniff, shrug my shoulders and go ‘hmm’ every 8 seconds, but the fact that everyone thinks they’re an expert on it.  There are two general reactions that I get to telling people I suffer from Tourette’s:

People think that Tourette’s is a ‘swearing disease.’ instead of taking one minute to investigate on Wikipedia what it actually is they brazenly choose to believe that I am making it up for some bizarre reason.  I don’t know what their thought process is here- perhaps they think that I'm inventing a disease to make myself appear more interesting, or that I somehow enjoy the attention of having people glare at me when I’m sitting next to them on a train.  (It’s the WORST on trains!) I used to tell people about it all the time when I was younger because I wanted to make excuses for my strange behaviour, but due to these reactions I am reluctant to tell people about it now.  It has only struck me recently just how often it comes up in conversation, and how it’s usually referred to in jest. 

Now you may have guessed from reading my blog that I have a sense of humour, thus:

And I am all for laughing at hilarious diseases; I mean, a disease that makes you do weird things for no reason has comic value and I shouldn’t be too sensitive about it, and I’m not, as a matter of fact.  Diseases like AIDS and cancer aren’t particularly funny because they affect the lives of millions and millions of people and, even if one has never known anyone that has had a horrible, life-threatening, disease like that, we have some understanding about how us or a loved one having the disease could make us feel.  The effects of cancer, for example, are so vivid and real in everyday life that there is literally nothing funny about them at all.

Tourette’s, on the other hand, must seem completely inaccessible to the general public; they can empathise with losing one’s hair or having a tumour removed because that is something that could potentially happen to them.  What people don’t seem to empathise with is things they don’t understand, and when people don’t understand things, the easiest thing to do is to laugh at them.  I’m not trying to be all high and mighty here as I’m completely guilty of this too, and, seeing as it must be very difficult for a person to understand what it is to have no control over one’s movements or vocalisations, it’s not surprising people make jokes about it.  By the same token, I have no idea what it would be like to have my testicles kicked, and so laughing at it is very easy.  And Tourette’s, let’s face it, is a hilarious disease when not properly understood.  I laughed myself silly at a book called ‘Pets with Tourette’s’ which involves an adorable rabbit yelling out ‘Tossbag!’ It’s not the general public’s fault that they’ve been given a false impression of what the disease is, so I bear nobody any ill will for making Tourette’s jokes.  80% of the time, I find them just as funny, and I don’t mind at all when people laugh at my tics. The other 20% of the time I give an inward sigh and wish that the disease that I happen to suffer with wasn’t one that also happened to be hilarious. 

Just in case people don’t know what Tourette’s is, it’s not actually a disease in itself, but just a way of categorising tic disorders.  Many people have tics, but, to have Tourette’s Syndrome, you must have had at least one vocal tic and at least one physical tic (at the same time) for over a year.  Mine have been going on for 17.  (The disease where people swear uncontrollably is actually called ‘Coprolalia’, and can be had completely independently of Tourette’s.  In fact, only 1 in 10 Tourette’s sufferers have Coprolalia, but the media don’t want anyone to know about this for some reason; maybe because people simply twitching and making random sounds isn’t quite as funny as if they were yelling 'CUNT!' at the top of their voice.)

Let me show you what having Touette’s is like.  Imagine there is a tiny cloud in your brain; I don’t know why it’s a cloud but it is:

Now this cloud, for no reason whatever, will slowly begin to grow and grow over 10 seconds.  It’s not painful, and it’s not like an itch.  I would liken it to feeling like the snowstorm that you used to get on old TVs being inside your brain.  It’s fuzzy; it’s grey, it’s sticky, and it’s really, really annoying.  You can choose to keep it there and get increasingly more frustrated, but after about 8 seconds it gets so unbearable that you need to shake it away; then you get about one second of wonderful relief, before the cloud begins to build again.  The cloud can be in the head, or it can be in a limb, or it may be in the nose or throat, meaning that you have to make a noise to get rid of it.  Sometimes I’m in a situation where performing these tics is not an option, meaning that I have to sit still and bear it; the effort of repressing them is so great that it means you cannot concentrate on anything else.  So, contrary to popular opinion, Tourette’s tics are not strictly involuntary (like a sneeze, or snatching your hand away from something hot), as you can control them to an extent.  It’s just really, REALLY hard.

I often wonder what my life would have been like without Tourette’s; on the one hand, I find myself fanaticising about how WONDERFUL it would be not have to do tics every few seconds.  To actually possess control over every inch of my body would be utterly amazing; THINK WHAT I COULD DO!!!! As is often said, freedom is wasted on the free; everyone out there who doesn’t have Tourette’s has an incredible gift in that they are free not to sniff and twitch their heads and can just sit and watch something for more than 3 minutes without feeling like they want to scream.  On the other hand, there are far worse problems in the world, and, in a way, I am incredibly lucky.  Having this disease completely shaped my personality into what it is today; I was forced to be weird and eccentric because it allows me to get away with odd things; often people don’t even notice I have tics until I tell them because I compensate for them in all sorts of inventive ways:

It also made me into the actress that I am; on stage, you see, my tics just vanish completely.  I mean, the character doesn’t have Tourette’s, does she? It’s ironic that I am only truly free to be myself when I am pretending to be someone else!  The energy stored up from tics that I have not performed is then used to raise the stakes for my character and make her as present on stage as possible.  In this way, my disease is a gift.  Hooray for me!!!! J