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People get good at hiding parts of themselves that are embarrassing or they hate. It makes life easier or buys us time until we can fix things. We do it too because we’re scared. // Important thread, pls read. #DisabilityVisibility
Slowly over the past 3 years, I have started to have issues, making me hide.Then 2 months ago, these weird things happening to me sped up to the point where my body would no longer let me hide.I lost control of me and it’s obvious what it is.Everyone can see... I have #Tourettes.
The only way I can hide now is to actually hide. Leaving the real world is pretty easy during a pandemic. And it’s been working, but not. Even Zoom’s mute button betrays me! This isn’t living, y’all. I have to fess up.
To take back some control, I get that I'm going to have to tell people. So here we are. Hi, I’m Haven, and I have #TourettesSyndrome, I am a climate activist, I love my world and won't stop fighting for it. What do you think? I'm still the same Haven. Promise.
I’ve learned so far: As long as I don’t feel emotions, I'm good. I can mask a little, but when I stop holding the tics in, they come out with a vengeance. If I’m focused, I don’t have any. The best way to help is to ignore the tics, but PLEASE don’t ignore me.
What are my tics like? I have simple + complex, motor and vocal ones. Complex comes out as clapping, blowing kisses, raising my voice, repeating others/phrases, whistling, etc. Simple ones might be grimacing, shrugging, head/neck jerking, rapidly moving my arms, things like that.
Tics are genetic, usually, but the environment affects them too. From what I read, know about my onset timing, and fam hist, the emotional trauma of being a leader in the youth climate movement prob flipped the Tourettes switch. Middle school and the pandemic kept the lights on.
What does this mean for my work in the climate movement? You tell me. In the end, it’s up to everyone else. I can continue to do what I’ve been doing; more likely, I’ll be pivoting to adapt to the new me, but whether I work alone or together is up to others’ comfort.
Prognosis is anyone’s guess. #Tourettes is usually at its worst around my age. 1/3 of youth outgrow it, 1/3 have tics lessen & 1/3 will see it worsen as adults. Meds, and therapy to try to mask my tics are prescribed. I'd love to hear y'all still 
me, answer some of ur Qs, Thx!
me, answer some of ur Qs, Thx!
