Believing each other

[sasha_feather]

My roommate and I had a quiet day at home. I finished my re-read of Known Associates, baked some banana bread, and relaxed. My pain levels are still pretty high but hopefully on the down-swing.

My dog remains such a bright spot in my life. On a whim I bought her a new collar off of Etsy.

What I've been thinking about: a while ago i listened to an NPR story about misophonia, which is a fear and rage reaction that some people have to certain noises, such as chewing: https://www.npr.org/sections/health-shots/2019/03/18/702784044/misophonia-when-lifes-noises-drive-you-mad

I don't have this, but what strikes me about the story is just the sense of being believed, and of validation that comes with having a name for the disorder and research around it. Giving people this feeling of, oh hey, it's OK to be bothered by something. It's ok to wear headphones or eat separately or move away from someone. Having social support around symptoms and experiences is so important.

My friend Nico wrote an essay about Star Trek and how a fundamental theme in ST is people believing each other's experiences:
"You have only your trust in me: Star Trek and the power of mutual belief."

https://uncannymagazine.com/article/you-have-only-your-trust-in-me-star-trek-and-the-power-of-mutual-belief/

Comments

[lilysea]

Yes, being believed is powerful.

I've had horrible experiences with being not-believed by doctors; strangers; friends...

I remember an airline attendant pushing my manual wheelchair trying to insist that I keep luggage on my lap, and when I told her "I can't do that, my physiotherapist says that it will badly aggravate my knee pain" she not-believed me and made a totally unnecessary fuss about it.

I actually cut ties with a friend because she not-believed me that fragrance eg perfume, spray on deodorant like Axe/Lynx/Rexona - gave me headaches and migraines.

"*I* don't get headaches and migraines from fragrance", she said in a tone of extreme disbelief."

Well, great for you. But humans are different from each other.

What made it worse was that she had chronic knee pain/knee injuries and an allergy to either peanuts or kidney beans [I forget which], so you would think that that would have made her more understanding. :/

[sasha_feather]

I'm so sorry. People can be real jerks. <3

I'm glad

[jesse_the_k]

...you have Abbie and she has you.

Re: I'm glad

[sasha_feather]

Me too! :)

[worlds_of_smoke]

what strikes me about the story is just the sense of being believed, and of validation that comes with having a name for the disorder and research around it.

oh god yes.

honestly, this is a huge reason I like diagnoses, even if they're shitty ones like psoriatic arthritis. For me, it helps me feel in control because it gives me something to research, something to build an attack plan against.

[sasha_feather]

Yes! It's so nice to have a diagnosis. I went for years without one, and while RA doesn't seem to cover all my issues, at least it is *something*.