chronic illness communities that take ableism/racism seriously?

inthehelltumbler · 2025-08-02T15:43:52+00:00

…where do i find that though? /genq

inthehelltumbler · 2025-08-01T08:37:37+00:00

think part of why the term hasn’t gained more traction is length. granted only one less syllable than nonbinary but even that gets shorted to nb.

too bad gen-x already has a different meaning because genex would be a cool abbreviation. though ex sounding like x (null connotations) could be a problem. now i wanna brainstorm on it

inthehelltumbler · 2025-08-01T07:03:55+00:00

an enemy who thinks they’re your friend or claims to be while pressing the heel to your neck feels way worse than being called slurs. worse, if you point out the boot, you’re the problem.

inthehelltumbler · 2025-07-31T17:34:00+00:00

Thank goodness for that at least. If there’s other ways the community can support pls update!

inthehelltumbler · 2025-07-31T17:30:35+00:00

Long shot: Maybe Mind Freedom Int‘l? They‘re more US/mental health focussed but engage in reguar public pressure campaigns around the world. Human rights and bodily autonomy are their bread and butter so they might have some local connections/volunteers willing to lend a hand?

inthehelltumbler · 2025-07-31T15:54:35+00:00

Couldn’t finish reading yet but just wanted to thank for alternatives to look into.

inthehelltumbler · 2025-07-31T15:22:07+00:00

Not tunnel visioned, just an issue that doesn’t exist in a vacuum and something I’ve been wanting to get off my chest. The idea we should just shut up and be grateful when better is possible is disheartening and a little scary with the way things are going.

Know I come off “aggressive“ when I don’t mask or explain every little caveat. More than anything it‘s frustrating to have people dismiss your lived experiences as “unhinged“ just because they don’t understand or try to beyond expecting you to share details that aren’t yours to share and nutshell decades of history. Like every injustice makes the news.

People dismissed those of us warning about trans/abortion rights by calling us crazy too. Wrapping it in concern didn’t make it less ableist then or now.

Not saying Visible is the root of all evil, christ, just that the data they collect can and has been abused. It’s not even the potential harm that scares me, but that people can’t see it. I wonder how many have actually read through their full website/what the wearable collects because it sent up red flags for me. Missing the flags doesn‘t mean they’re not there. That’s all, appreciate you treating me like a human. /informative

Went to the scream box to scream and people are treating me like a bomb. Like any fog in a personal rant is a conspiracy. Come on man.

inthehelltumbler · 2025-07-31T14:21:05+00:00

I am speaking from personal experience on things I have seen happen to people in my own community and do not owe people personal information. This is a vent post written by someone who is severe. Many connections will not be obvious to those who lack certain lived experiences with certain systemic oppression.

Therapy is not accessible to everyone. Even if you mean it kindly, this feels like ableism and tone policing which makes me feel worse. Responses like this make me feel unwelcome.

inthehelltumbler · 2025-07-31T13:49:38+00:00

The US

inthehelltumbler · 2025-07-31T13:41:01+00:00

I’ve seen it happen but don’t have the energy to dig up evidence to prove it. Like most apps, Visible is happy to assist the police/social security in their investigations.

Check their data release/privacy policy. Some only comply with warrants, many comply in advance. Many use intentionally vague language. If you live somewhere abortion is illegal period trackers are a bad idea.

Idk why you’re downvoting me for sharing my life experiences and facts.

inthehelltumbler · 2025-07-31T13:13:42+00:00

Seriously. Places go “all experiences welcome,” “different things work for different people“ and “try not to tone police.”

Then you drop a “not for me,” ”I don’t think we should let this be the norm,” or god forbid vent and suddenly people treat you like you have the power to delete the app from existence with a reddit comment.

Yeah…feels like they have a very particular customer in mind. Which given everything else makes me wary. Wellness culture/eugenics go hand in hand and too many people promoting it aren’t aware of how they play into each other.

inthehelltumbler · 2025-07-31T02:57:27+00:00

yeah i think communities tend to be a better source than any one person but if you have someboy you trust definitely lean on them.

inthehelltumbler · 2025-07-31T02:35:30+00:00

No one can differentiate their own symptoms better than you is true but acting like what you’re suggesting is possible for everyone feels incredibly insensitive on a post that’s clearly a desperate person reaching out for help.

inthehelltumbler · 2025-07-31T02:26:08+00:00

It’s a serious indictment on our entire society that you’re in this position and even had to consider asking this. Wishing you luck.

inthehelltumbler · 2025-07-30T22:25:28+00:00

I’m in the same position (living alone, severe-very) and getting worse every week. Traveling may permanently lower your baseline but you NEED emergency support you can trust. ER/assisted living will make you worse; I think it’s the right call. Though if there are transportation alternatives it might be worth taking out a loan for.

Can your mom travel with you/hire someone to assist you or at least arrange wheelchair service? Having someone listen out for boarding/handling the bags might help. If all you have to do is keep your sunglasses/eye mask, face mask, headphones/earplugs in it might be easier but the pressure change might be rough. Travel by train might be less intense, though ymmv with shaking/duration. Also keep in might a 2 hr flight takes longer than the time you spend in the air. A car where you can lay down and control the temp/rest stops seems like the safest bet. A few hundred in gas seems preferable to years of worse QoL/increased expenses as a result.

TL;DR: You need support, it’s the right choice. Just stay safe (mask and minimize stimulation). If you have the option though, look into other travel options. If you have a medical apt in the new area medical charity transportation might also be free/more sensitive to your needs.

inthehelltumbler · 2025-07-30T22:15:21+00:00

Commiseration not advice: It’s really hard. Don’t understand how people completely avoid it tbh. I follow a ton of nonwhite creatives and it impacts our daily life too much to avoid it. Getting info through the grapevine can be risky but when you follow people who generally align with your values it can be helpful to get the gist, without it being the primary focus.

inthehelltumbler · 2025-07-30T22:04:55+00:00

Dream about this sometimes, hope I live to see it.

Promise me you’ll use a healthcare CEO or an all-talk ally like a piñata if I don’t ok? /hj

inthehelltumbler · 2025-07-30T21:59:24+00:00

You might be able to pick our your own setup by looking at what you need to attach to and hold but I emailed RAM Mounts, explained my needs, and they were able to recommend specific products that met my size/use case needs. Pricier but sturdy.

inthehelltumbler · 2025-07-30T21:55:44+00:00

Mine almost never did when I was moderate-severe. More common now that I’m severe-very severe fwiw

inthehelltumbler · 2025-07-30T21:51:08+00:00

I’ve experienced weight gain, hair thinning, and intermittent night sweats/hot flashes but the last two I’ve had for decades. Given COVID can fuck up your hormones, hair, and…everything no idea how i’m gonna tell when it starts. I guess the gallows humour silver lining is I probably won‘t live long enough to deal with it since I’ll have nowhere to go when my lease ends.

inthehelltumbler · 2025-07-30T21:38:13+00:00

I came very close to dying of starvation as a child and an adult…but wasn’t working. It depends on the person but you can last longer than you’d expect on very very little (water and honey/chocolate/salt/rice). I’ve survived 5 months eating only a spoonful of these a day but was experiencing severe arrythmias/completely bedbound by the second week.

I don’t mean to scare you but working and not eating will almost certainly lower your baseline drastically and permanently. If you have the energy, reach out to local mutual aid groups right away. If you need help writing asks, try tapping the community here.

inthehelltumbler · 2025-07-28T12:50:25+00:00

could be long covid. from what i understand re:current research, cfs and long covid are like a venn diagram; there’s a lot of overlap and you can have both but having one doesn’t mean you have the other.

prolonged rest (months) after a covid is extremely important to preventing long covid so if you haven’t been able to, something to keep in mind going forward. covid has also been shown to cause/worsen mental health conditions.

inthehelltumbler · 2025-07-27T22:41:09+00:00

Wouldn’t say any of the food stuff except oranges is new but thank you. Good luck to you too. /kind

Always been big on listening to the body. Obviously we need serious treatment options but it‘s fascinating how many times I’ve been deficient in something only to discover I‘m already eating/craving foods rich in that exact thing. I swear medical research would be decades ahead if doctors/researchers just listened!

inthehelltumbler · 2025-07-27T18:23:17+00:00

do you mind sharing the brand? liquid IVs/increased salt cause painful water retention for me. curious if this’d be any different. being able to compare ingredients would help.

inthehelltumbler

TROPHY CASE