AIBU to post this about Tourettes? I realise its not yet awareness month, thats 15th May-15th June. But I feel like this needs to be said.
Tourettes is a neurological disorder. It is characterised by tics, these are completely involuntary and uncontrollable movements and sounds. They’re spilt into motor and vocal tics. Motor are movements which cause you do things such as jerk your head, jump, facial grimace and arm flail. Vocal tics anything from breathing tics to whistling to words and phrases.
Tourettes is a fucking awful thing to live with. It has its funny moments, of course, some tics are genuinely hilarious. But the vast majority of the time its painful, embarrassing, mortifying, annoying and infuriating.
I’m posting this as mumsnet and the world are full of Tourettes jokes. Joking that just because you swear you must have Tourettes. Im posting this because tourettes is a massively misunderstood condition. You wouldn’t joke about other neurological conditions such as stroke or MS. But because tourettes is so hilarious (read sarcasm) no one cares about how serious it is. Ive been shouted at and threatened to be punched and beaten up. I know people online in support groups that have actually been beaten up because of something they have ticced.
I’m so glad of all the awareness that the internet brings. But it’s still not enough.
There is also very little support overall, let alone for adults. There is next to nothing for adults support unfortunately, children have more support but its still not enough.
Tourette Scotland and Tourettes Action are the two UK charities. Tourette Scotland really struggles for funding and is purely volunteered based. Tourettes Action gets more funding but still not enough unfortunately.
Anyone I ask everyone to be more aware about tourettes. And if you see someone in public with tourettes just ignore the tics, thats the preferred method.
If anyone has any questions myself and I’m sure others on mumsnet with tourettes or kids with tics will be more than happy to answer them. I’ve heard it all so I don’t think any question can offend so don’t worry.
Thanks.