Tourettes is not fun. I repeat, TOURETTES IS NOT FUN. Despite this mind numbingly obvious fact I've often felt like I am a 'funny novelty'.
I've often been told that my tourettes cheers people up. That's lovely and is a great comfort to me, it's so much easier to be myself when people are accepting, or even jovial, when faced with my tourettes. But, and this is a bigger butt than mine, people often forget that outward signs of tourettes indicate inward discomfort or stress.
I'm not always stressed out when I'm ticcing, in fact most of the time I'm not stressed at all. There are, however, times when I have been very stressed and someone has said something like 'I love that tic, it always makes me laugh!'. Now on a normal day that's fine, in fact it's a very positive reaction and I usually appreciate it. On a bad day it's like saying to someone with epilepsy, 'I love it when you fit, it always makes me laugh!' - totally unacceptable. Tic are involuntary and uncontrolled and are not something I do to make Joe Blogs laugh.
So how can you tell when it's inappropriate to make such a comment?
If the tics are 'aggressive' - if I appear to lunge at you or spit the words out, it's a bad day.
If the tics replace my speech - this is a weird one but, if the tics are responding to you but I'm not, it's a bad day.
If the tics are very physical - if my head and arms are out of control, guess what? It's a bad day!!!
There are other warning signs, these are just 'the big three'! If I show any or all of these signs here's the official(ish) guide to what not to do when Deanna's tics:
Don't make jokes... Humorous comments about my Tourettes are usually fine (I laugh mostly) but on a bad day it's like lighting a cigarette at a gas station... Not a good move.
Do not set me off on purpose!! I've mentioned it before and many people have said 'I can't believe anyone would do that!', the thing is most of the time these things aren't done out of spite, it's misplaced curiosity or humour. Someone will notice that something sets me off and will then repeat the trigger 'just to make sure'. If you set me off, DO NOT REPEAT IT!!
Don't quote anything!! If you keep repeating the same phrase or story or song lyric it will set me off! (Especially if it's in an accent). Well known phrases that you've adopted as your own are my kryptonite... They will trigger me, I know it's hard but try not to used standardised pet names ect around me on a bad day, without fail I will pick it up.
Of course on a good day I don't need any 'special treatment' and if you forget these things I won't hold it against you (I have broad shoulders!)
I suppose I wrote this blog to inform you, so that you can make the choice to make allowences for me and anyone else like me that you may know.
Tourettes is very subjective and I can't guarantee that the things that cause me issues cause others issues as well. The main point is that, although I'm shouting phrases and barking at dogs, I'm still a human being with feelings. We should all treat each other with respect and compassion, remember people with conditions or disabilities are not novelties for entertainment! I am not a dancing monkey!!