this post was submitted on 26 Jan 2026

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Disabled Community Megathread from January 26, 2026 to February 8, 2026 (hexbear.net)

submitted 3 months ago by gingerbrat@hexbear.net to c/disabled@hexbear.net

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My thoughts these days go to the medical professionals who, despite the pressures and stress they're facing, are putting in the effort and time to understand our struggles, take them seriously, and try to help to the best of their ability, sometimes even beyond. All medical professionals should be like this; I'm glad there's at least some who are.

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[–] la_tasalana_intissari_mata@hexbear.net 7 points 3 months ago (1 children)

if I could scream, I would never stop

[–] Keld@hexbear.net 6 points 3 months ago

"You have a mouth and you wanna scream", the collective work of most disabled people.

[–] edie@lemmy.encryptionin.space 6 points 3 months ago (2 children)

They’re changing the way you pay for public transit here. You used to have a card that you tapped on terminals, now you have either an app or a different card. What's the difference? Why do they need to get rid of the old card to make a new card??? Capitalist fucking "innovation"

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[–] Keld@hexbear.net 5 points 3 months ago* (last edited 3 months ago) (1 children)

Its so much sillier. The new card is split into two kinds, a version that just makes you pay with your card the total sum at the end of the day or an "anonymous" version that works EXACTLY LIKE THE OLD ONE.

Now the differences are that you need to check out at every stop, it won't show you the price of anything and there will only be one scanner instead of a check in and a check out scanner.

This solution was implemented to head off criticism of the removal of the old system. So they made the old system but more convoluted.

Edit: I used a term I should not have. I apologise.

[–] edie@lemmy.encryptionin.space 4 points 3 months ago* (last edited 3 months ago) (1 children)

What a joke. They could have just made the app and continued with the old system at the same time. Like... what was wrong with it?

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[–] Keld@hexbear.net 4 points 3 months ago (1 children)

Supposedly the new system was developed in cooperation with some disability rights orgs and the DaneAge association because checking out more and not having to "fill up" the card is better for people with bad memories or something. I don't know if that's true. I feel like given that there was already a system where you could automatically fill it up each month, you could easily build whatever payment system they felt was more suited on top of the old one.

But they wanted to get rid of the old system, didn't want to make anyone mad, so now we have the old system 2.0

[–] Le_Wokisme@hexbear.net 5 points 3 months ago

there's tech debt reasons not to do that, like maybe APIs aren't available or complete enough, but they could also just be getting swindled or bribed by somebody. ought to be journalists looking into it

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[–] Dort_Owl@hexbear.net 6 points 3 months ago (2 children)

CW: Paranoia, COVID trauma

spoiler

I'm not smart, at all. So it actually gives me real anxiety just how many people seemingly are having trouble understanding very simple things or understanding reality in a basic level. Like ignorance on an almost callous level too. It's like everyone is doing vibe based thinking and the vibes are all fucked. Such thinking can be easily led to accept and even commit atrocities and I find that very, very scary. An example of what I mean is something that still haunts me from during the height of COVID. I remember when people were being forced to return to work again even though COVID death numbers were getting worse, and a coworker I previously thought of as a kind and decent person smiled and said to me (when inquiring about me wearing a mask to work) "Don't worry, I don't need a mask, it's only weak and old people dying anyway."

[–] BountifulEggnog@hexbear.net 5 points 3 months ago

I feel like they just don't care. You can spell something out so blatantly and they go nuh uh. It has to be deliberate ignorance.

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[–] Dort_Owl@hexbear.net 6 points 3 months ago (1 children)

CW: Talking about the Epstein news

spoiler

So yeah, the flood of all the Epstein news is officially starting to trigger me. I'm glad the truth is coming out and these monsters are finally being exposed, but constantly hearing about the most evil things imaginable is starting to get to me. Caught between wanting to stay informed and wanting to protect my mental health.

[–] Salah@hexbear.net 4 points 3 months ago (1 children)

Spoiler

I worry that the constant exposure to these horrific crimes will desensitise people. Personality I try to avoid the explicit stuff as much as possible.

[–] gingerbrat@hexbear.net 4 points 3 months ago

I'm afraid you may be right about this. Exposure to horrific news has a tendency to do just that.

[–] WhyEssEff@hexbear.net 6 points 3 months ago (2 children)

realized I was exhibiting depression symptoms these past few months. Just got my SSRI dosage (prev for anxiety) upped after talking to my psychiatrist meow-bounce

[–] WhyEssEff@hexbear.net 5 points 3 months ago* (last edited 3 months ago) (1 children)

also finally pushed myself into deleting X The Everything App off my phone billionaire-tears sorry umatter but I'm not eating a shit sundae just in case some of it's fudge, it's been real

[–] Keld@hexbear.net 6 points 3 months ago

Two good steps for your mental health then.

[–] Dort_Owl@hexbear.net 4 points 3 months ago

meow-hug good luck

[–] DisabledAceSocialist@hexbear.net 5 points 3 months ago

I had another bad fall yesterday, my second in about two months. Couldn't get up for ages, luckily it was just in the house. Because of how shit the NHS is, how difficult it is to get treatment, how few and far apart and crap my physiotherapy sessions are, my disability is getting worse over time rather than improving. And the government wonder why so many people are too disabled to work! And I still can't shake this UTI.

[–] TheSpectreOfGay@hexbear.net 5 points 3 months ago (1 children)

i sometimes rly dont get allistic ppl like. they will silently think ur being a dick and never tell u and then just randomly stop talking to u and this is your fault bc u were being a dick. like okay i don't know im being a dick most of the time pls at least just be like "hey ur being a dick" so i can correct it?

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[–] CornWoman@hexbear.net 5 points 3 months ago (3 children)

My psychiatrist f%#ked up and gave me too little pills to last until the next visit with him, so I went without my antidepressant medication for at least a week. The withdrawal symptoms were horrible, anxiety, depression, head and stomach aches, etc.

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[–] DisabledAceSocialist@hexbear.net 5 points 3 months ago (1 children)

I hate this country so much I hope ww3 happens very soon and we get 1000 nukes dropped on us to obliterate us from the earth. Why is it so difficult to get even basic healthcare? My neuropathy got so bad I started taking my folic acid again. My bladder flared up so badly I can't get a wink of sleep. The bladder sachets the GP gave me are useless. He referred me to the NHS dietician because of all this, to try and find some kind of substitute for the folic acid tablets. The dietician said I'm on the waiting list but in the meantime I should ask the GP to refer me to the hospital for a folate infusion - where they would put folate directly into my blood with an IV drip. So yesterday I went through the whole rigmarole of trying to get a GP appointment, turning up at the crack of dawn, getting in line, waiting, got put on the triage list for a phone call, and in the end they didn't even bother phoning me. So I went back again this morning and went through the whole thing again to be told they didn't bother phoning me as they can see I haven't actually had an appointment with the dietician yet, and they need the dietician to tell them to do this. The dietician department say they don't know who said I should get the folate infusion and they're trying to find out. The whole thing is a mess and in the meantime my neuropathy is so bad I've now lost movement in two toes on the right foot. Just nuke this shit hole now.

[–] gingerbrat@hexbear.net 4 points 3 months ago (1 children)

to be told they didn't bother phoning me as they can see I haven't actually had an appointment with the dietician yet, and they need the dietician to tell them to do this. The dietician department say they don't know who said I should get the folate infusion and they're trying to find out

What the actual fuck is going on over there on the island? Like, holy heck, does anyone of these people communicate with each other? I'm sorry again that you have to deal with this, and losing movement in two toes is absolutely terrifying. Is there any other option left? Anything you could try?

[–] DisabledAceSocialist@hexbear.net 4 points 3 months ago (2 children)

I got an appointment with a GP today, because of the folic acid I now have full blown cystitis again. Also my blood test shows that the folic acid has raised my folate level just enough to not be currently eligible for an NHS IV folate drip. Still low level though. The doctor gave me some antibiotics for the bladder and said if I can't take the tablets any more, all we can do is wait for my folate level to drop down lower again and then maybe I can get the IV. She told me to get my levels retested at the end of March. And I am really terrified about the neurological symptoms and loss of movement in my toes but I am still on the waiting list to see a neurologist about that. Although all the GPs tell me it's almost certainly the low folate levels causing it and nothing the neurologist can do. Like everything, I have to wait until the situation gets worse before they do anything.

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[–] CornWoman@hexbear.net 5 points 3 months ago (1 children)

I'm finally back on my antidepressants and I feel a lot better. My doctor gave me advice on what to do in case I run out again, so hopefully I can avoid withdrawal in the future.

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[–] joaomarrom@hexbear.net 5 points 3 months ago (1 children)

It took almost two years, but I'm finally going through proper neuropsychological assessment so that I won't have to be treated like a junkie looking for a fix whenever I describe my ADHD symptoms to a psychiatrist. I swear, having the patience to wait until my insurance clears my request for assessment is almost in and of itself a negative diagnosis for ADHD.

On the other hand, immediately forgetting I made the request and then being reminded two years later that it's time to do the assessment is very much in character.

[–] gingerbrat@hexbear.net 4 points 3 months ago

I am very happy for you finally getting the assessment. Even if you forgot you made the request, you waited for a long time and maybe now, finally, you'll get the help you need. I'm rooting for you! meow-hug

[–] Keld@hexbear.net 5 points 3 months ago (1 children)

"In order to centralise the disability support system and bring it closer to your study environment at your educational institution we are moving responsibility for it to your teaching faculty and the physical location of your support center away from campus and to a handicap inaccessible building that is an hour away by public transport"

screm-a aaaa aaaa

The professor who spilled the beans is going to be responsible in part for overseeing my disability aid

[–] gingerbrat@hexbear.net 4 points 3 months ago (1 children)

This is completely unacceptable. Have you gotten around to writing the complaint with your (now former) counselor?

[–] Keld@hexbear.net 4 points 3 months ago (2 children)

I did. I also sent it. I asked who would review the complaint now and they dont know but they think it might be the faculty!

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[–] Keld@hexbear.net 5 points 3 months ago* (last edited 3 months ago) (5 children)

Shit. I gave someone bus directions and I forgot to tell them when to get off. If they don't realise theyre gonna be screwed. I'm having a bad time both with the guilt over that and about making their possible misfortune about me.

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[–] Dort_Owl@hexbear.net 5 points 3 months ago (1 children)

I wish I could feel safe around people

[–] CornWoman@hexbear.net 4 points 3 months ago

My extreme paranoia has made it difficult to stand still with people behind me. They could do something to hurt me, after all.

[–] Keld@hexbear.net 4 points 3 months ago

My disability support person at school got a different job so I don't have any support until March, and also I was technically assaulted at work and also I am still spiralling about that person I gave bad directions to.
Volunteering has been good though. Everyone has been nice to each other there. Doctors love giving vague references to future appointments they then don't book and not telling people about their rights but once reminded they do their thing pretty well.

[–] DisabledAceSocialist@hexbear.net 4 points 3 months ago

A nurse who is friends with my landlady brought over a couple of folate injections for me, to see if they'd be any more tolerable, and now my bladder infection is even worse = there's so much blood in my urine it looks like a strawberry smoothie. So I've been given more antibiotics and there is clearly no form of synthetic folate that I can tolerate.

[–] CupcakeOfSpice@hexbear.net 4 points 3 months ago (3 children)

So I have a psychotic disorder, so I sometimes experience things that didn't really happen. This does not make what happened any less traumatic, but it does change how people treat my experience. If someone came to me saying what I'm preparing to say, I know I would try to be as validating of their trauma and try to help them as much as I could, but for some reason I just can't extend the same treatment to myself. So I'll put it here and throw myself on your mercy. Even if you can't be validating, please be kind. I'm not trying to hurt anybody.

CW: SA

When I was younger, I had a hallucination that affected all of my senses that was of a woman SAing me. I guess that's the whole story. I used to have more frequent, vivid, and senseful(?) hallucinations than I do now, before I started taking medication. I've been terrified of the dark ever since, and still hear her voice in my head from time to time. I feel like I can't move on in part because I can't escape her and in part because I feel like its unreality invalidates every feeling I've had about it. I try not to invade spaces where people talk about this kind of trauma, because I do understand there is a big difference between what happened to me and what happened to them. Mine was a fabrication, an image of something; while theirs is real, and many of them have physical consequences of that. I just want somebody to tell me it's okay to feel afraid and hurt and a little sick about it. I need to move on... somehow.

[–] TheSpectreOfGay@hexbear.net 5 points 3 months ago (1 children)

same CW

I have Dissosciative Identity Disorder so not quite the same, but a lot of us struggle with this sort of "trauma that isn't actually real". Though we call it intratrauma, as it is trauma that happens internally (in headspace, usually).

Generally my opinion is. Even if something isn't "real", if you are having a trauma response to it, then it is real according to your nervous system. If you have meaningfully changed your behaviour due to your trauma, you are experiencing real trauma symptoms. While I do agree that it's not the same as actually being assaulted, it's still traumatic and you deserve to acknowledge it as such. Anything else is doing the thing where you don't consider your trauma valid cos some people have it worse and that's no good

[–] CupcakeOfSpice@hexbear.net 4 points 3 months ago

That makes sense, thank you.

[–] Salah@hexbear.net 4 points 3 months ago

Spoiler

I’m so sorry you’re having to deal with that, especially so alone since many people don’t understand. A trauma is a trauma and the event itself doesn’t matter as much as the harm its done. 🫂🫂🫂🫂🫂🫂🫂🫂🫂🫂🫂🫂🫂🫂

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[–] DisabledAceSocialist@hexbear.net 4 points 3 months ago

I feel just awful. Every medication has side effects. My cancer meds gave me food intolerances so now I have this folate deficiency. The folate supplements give me UTIs. So I have antibiotics for that, and they have given me a migraine. It just never ends.

[–] la_tasalana_intissari_mata@hexbear.net 4 points 3 months ago (1 children)

it would be nice if I was able to express myself.

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[–] DisabledAceSocialist@hexbear.net 4 points 3 months ago

Well, my period has become the heaviest period I've ever had. Coming so soon after the folate injections I think maybe I'm not in perimenopause after all, maybe the folate deficiency stopped the periods. I googled it and it said a folate deficiency can cause this.

[–] DisabledAceSocialist@hexbear.net 4 points 3 months ago (2 children)

Now the antibiotics I've been given for my bladder are flaring my achilles tendonitis up again. These antibiotics actually cause tendonitis, how nuts is that? It's actually a listed side effect. I think I have to stop taking them, I don't want to end up crippled again after just starting to regain my mobility a bit.

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[–] DisabledAceSocialist@hexbear.net 4 points 3 months ago

I feel awful. My UTI won't go. They extended my antibiotic course, then changed it to an extended course of a different one and it's still not working. I just can't fight this off.

[–] DisabledAceSocialist@hexbear.net 4 points 3 months ago (2 children)

I spent last night having an allergic reaction, followed by the worst diarrhoea ever, due to my latest round of antibiotics. Still can't shake this UTI.

And I've spent the last nearly two weeks being tricked by someone over mutual aid again. When will I ever learn? Someone started emailing me daily, through a basically anonymous email account, talking about how they wanted to help me out with gift cards, asking which ones I wanted, etc. I was a bit suspicious because all the info they need is right there in my posts and profile. But they seemed so friendly and caring, so I told them again, and they spent the next week messaging me about various communist related stuff and their interests and we got chatting and they always added stuff about how they'd send a gift card. Then they just stopped responding. Day after day I checked back to see if they had responded again but it's been nearly a week now and I have to accept that it was most likely another trick. Maybe it was the same person who spent weeks tricking and leading me on before or maybe another one. Why do people do this?

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[–] Keld@hexbear.net 4 points 3 months ago (1 children)

You guys are cool and I'm sorry for whatever trouble is ailing you at the moment. I hope you have a great week, I'm not going to be here much for much of it but I want you to know that I am rooting for everything to go your way.

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