Jazzy piece of art from Pinterest
Tourette's Awareness Month is May 15th – June 15th!
When you have Tourette’s meeting someone else like you can often be a great comfort and reassurance, but if you’re unable to meet people with Tourette’s in person online groups are the second-best thing. If you have Tourette’s, I’d recommend finding a closed online group, only open to other Tourettey people. Unfortunately I’ve often found the comments and content of open groups to be inaccurate, insensitive and often just annoying, you won’t get good advice about Tourette’s from people who don’t have Tourette’s! Tourette's awareness month nearly upon us and with that in mind I’ve asked several Tourettey people from such groups:
‘If you had 30 seconds to tell everyone one thing about Tourette's what would it be?’
Here are the results:
Elizabeth Hall
‘I’m me . I can’t and won’t change . I tic externally as you can see , but there’s also a barrage of internal ticcing that you can’t see . My Tic story isn’t anyone’s to criticise or question . I love who I am and my TS has made me empathetic and kind. Laugh with me not at me . Help me to forgive myself when the challenge is too great and I need time out .’
Jolie Reed
‘It's like having an itch and trying not to scratch it. Eventually you scratch and you feel better. Sometimes people stare. They just need to be educated. Not everyone cusses or hits themselves…And no it's not deadly or contagious.’
Tom Benedict
‘We are not our diagnoses. They describe a small part of who we are, but nowhere near the whole. TS makes me cuss and it makes me hit myself. But if that forms your entire impression of me, you miss all the parts of me that make me who I really am. Believing only the stereotypes robs everyone of the chance to truly know one another.’
Anonymous
‘I have severe Tourette's episodes. I have diverse triggers. They're often set off by sensory issues. It's exhausting to think about and explain all the reasons I may act a certain way, such as insomnia from the tics keeping me from falling asleep at night, which causes me to be less functional at times.’
Jayne Priest Jones
‘I have Tourette’s but Tourette’s doesn't have me’
Jill Neuman Cohen
‘In some ways it has made me a better person because I am more understanding to people who are different’
Alice Moon
‘Sometimes tics hurt. A tic can be literally ANYTHING! I bang my head forward and have had to go to PT. Please understand it's not all funny.’
Gretchin Âû Bailey
‘I would tell people to not judge someone on first view. I am not crazy, a drug addict, drunk, or anything like that even though at first glance I might appear to be all of these. I can't control these words and actions therefore being physically or verbally aggressive towards me isn't going to make them stop. I don't mean everything that comes out my mouth, and if you aren't sure if it was me or a tic, please ask. I'm still a person with hopes, dreams, and feelings. Give me a chance and get to know me and not just judge me by my Tourette’s.’
Paul Hadfield
'I can’t stop it'
Kate Marsh
‘Just accept mè for who I am. Not what yoù see. Tourette’s doesn't define me. I have personality. I have Tourette’s, yes. But it doesn't have me. Love me or not. This is me.’
Dash Kraines
‘Even though I can't control it, I'm still sorry that my tick scared you. Also, it is kind of like a hiccup/sneeze/cough where you technically can hold it in, but that will just make it want to fight its way out’