My partner just asked if Mastodon has any accounts or conversations related to transverse myelitis, with which she has been diagnosed since 2013.
She's not on Mastodon but is considering it; she hasn't enjoyed encounters with TM groups on Facebook (kind of an anti-vaxxer / thoughts and prayers / tinfoil hat crowd).
Shot in the dark, but would anyone be welcoming of her and hearing her if she gets a Mastodon account?
She joined! At @pwrmnstr. Give her a follow if you'd like, she's dark and often sarcastic but doesn't bite.
I have MS too! We're not many, but some and I'm yet to encounter that dreaded community type she wants to avoid around here.
There's a project called #Trunk where she may also find other spoonies, with MS or not, at: https://communitywiki.org/trunk/grab/Chronic%20&%20Invisible%20Illness
Sooo, the answer is yes!
Thank you for the thoughtful response!!
Her TM diagnosis so far is still just TM— though she’s getting to the age where if it’s going to develop into MS then it’s going to do so soon.
Last night she asked on the Facebook page if there was a Transverse Myelitis group specifically for atheists and, well... we’ve woken up to some nasty and/or condescending comments today. 😢
@pwrmnstr @cryptograbear @eloisa Well, you're in the right place, at least -- "supportive environment" is modus operandi around these here parts. Discovery is still not as easy as centralized platforms with deep searchability, but you'd still be surprised when you occasionally discover those few people who are incredibly on your wavelength!
I’ve only been on Mastodon about a month myself, and I’m still figuring out the ecosystem and the UI— but it’s so refreshing both because the culture is less toxic and also because there’s no algorithms— posts that get a lot of visibility do so because they’re boosted by other members.
And it might be that those two things are related. 🤔
I have no idea what she has, and personally it really doesn't matter to me. Those folks that are shallow and close minded should stay in Facebook with the rest. She's welcome here regardless of her stature
She's always welcome to Mastodon.
@cryptograbear In my experience, the community around here is very welcoming regardless of who you are and what burden you carry.
I know the folks in a TM group could lend an ear in a way that those of us who aren't in a TM group can't. I don't know if there is such a community in the fediverse -- but until your partner finds one, I'm sure there are plenty of folks in the fediverse who would be welcoming of her and hearing her (including yours truly).
@cryptograbear By the way: what I like most about the fediverse is that you get to create your own groups.
There definitely are anti-vaxxer/thoughts and prayers/tinfoil hat folks around here, too, but they don't really get to take over your timeline the way they take over FB groups.
My timeline is mostly programmers, sysadmins and hackers of various kinds and they're amazing people. Sometimes I get home too late to write anything but I still enjoy just reading the timeline for a few minutes.
@cryptograbear completely untrue. i bit you ten minutes ago.
A cool and chill place for cool and chill people.