this post was submitted on 14 Jul 2025
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disabled

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Welcome to c/disabled, an anticapitalist community for disabled people/people with disability(s).

What is disability justice? Disability justice is a framework of activism which centers disabled people of multiple intersections. Before participating in in this community, please read the Ten Principles of Disability Justice.

Do I count as disabled/a person with disability(s)? "Disability" is an umbrella term which encompasses physical disabilities, emotional/psychiatric disabilities, neurodivergence, intellectual/developmental disabilities, sensory disabilities, invisible disabilities, and more. You do not have to have an official diagnosis to consider yourself disabled.

Follow the Rules:

  1. This comm is open to everyone. However, the megathread is only open to people who self-identify as disabled/a person with disability(s). We center the experiences of disabled people here, and if you are abled we ask that you please respect that.
  2. Follow the principles of disability justice, as outlined in the link above.
  3. Zero tolerance for ableism. That includes lateral ableism. Ableism will result in a ban.
  4. No COVID minimization.
  5. Do not offer unsoliticed health advice. We do not want to hear about the wonders of exercise or meditation, thank you very much. Additionally, do not moralize health or "healthy choices".
  6. If posting an image, please write an image description for our blind/low vision comrades. (If doing this is inaccessible to you, DM one of the mods and we will help.)
  7. Please CW and spoiler tag discussions of ableism.
  8. When it comes to identify-first vs person-first language, respect the language that people choose for themselves. If someone wants to be referred to as a disabled person, respect that. If someone wants to be referred to as a person with a disability, respect that.
  9. Try to avoid using ableist language. It is always good to be mindful of the way language has been used to oppress and harm people.
  10. Follow the Hexbear Code of Conduct.

Let's kick back and have fun!

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In my dreams, you lay your sorrow on the table, and the air between us is soft and we have time.

As always, we ask that in order to participate in the weekly megathread, one self-identifies as some form of disabled, which is broadly defined in the community sidebar:

"Disability" is an umbrella term which encompasses physical disabilities, emotional/psychiatric disabilities, neurodivergence, intellectual/developmental disabilities, sensory disabilities, invisible disabilities, and more. You do not have to have an official diagnosis to consider yourself disabled.

Mask up, love one another, and stay alive for one more week.

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[–] la_tasalana_intissari_mata@hexbear.net 4 points 1 week ago (5 children)

I kept screaming while sleeping last night, it was comprehensible.

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[–] IbrahimTraore_Fangirl@hexbear.net 4 points 2 weeks ago (1 children)

a few days ago I was going to discuss with someone about my death, for a few moments I genuinely believed I died a long time ago and I was going to discuss it.

[–] DisabledAceSocialist@hexbear.net 3 points 2 weeks ago (1 children)

Sorry to hear that. Do you have Cotard's syndrome?

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[–] DisabledAceSocialist@hexbear.net 4 points 1 week ago (7 children)

I'm so exhausted because of my thyroxine issues right now. It's making it hard to get on and deal with my benefit appeal and the dignitas stuff, but I'm managing to do at least a little something towards them each day like send an email or fill out a form. other than that I am so tired I keep falling asleep during the day. I'm still trying to get the money together to pay for the doctor's note but apparently the only GP that knows me personally there is on holiday for 2 weeks so I guess there's no point rushing right now anyway. I feel like if I do at least one thing towards these two issues each day then at least some progress will get made, however slowly. And i'm going to need to pay for ID documents but have no money for that either. It's all so overwhelming the only thing I can do is one small thing each day.

For once though, one tiny good thing happened. Recently the neurologist said she wasn't going to prescribe my migraine tablet, rimegapant, any more because my migraine diary shows it isn't working well enough to justify the expense. (Apparently a pack of 8 tablets costs the NHS £125 and I've been getting 2 packs a month. The pharmacist scolded me a few months ago for costing the NHS so much money.) She prescribed a new tablet in it's place, but that was only delivered today so i haven't tried it yet. I've been very, very worried about managing without the rimegapant. Last week I quickly put in a repeat prescription request for my two boxes of rimegapant, hoping I'd be able to get it dispensed before the neurologist's letter arrives telling them not to dispense it any more. Today I received it, and when I opened the prescription bag, not only did it contain rimegapant but weirdly it contained 7 boxes instead of 2. A three and a half month supply instead of a 1 month supply. I can only assume the pharmacist made a mistake but I am keeping them. A small victory at last.

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[–] DisabledAceSocialist@hexbear.net 4 points 1 week ago (1 children)

I just finished a course of antibiotics for my latest foot infection 2 days ago. It was seeming OK. Now the pain is back, I think it's infected again already and I don't want any more antibiotics, the last ones made me nauseated and gave me constant diarrhoea.

And I'm still struggling with my thyroxine issues, I'm so tired it's a struggle to stay awake or prepare food or anything. I was hoping someone would send me a justeat gift card so i could just order preprepared food until I have a bit more energy but my request is going unanswered. I guess I can't complain, there are a lot of people worse off than me needing help. It's such a sick world we live in where the most desperate people in the world have to compete with each other for food. It might as well be the Hunger Games at this point.

[–] un_mask_me@hexbear.net 4 points 1 week ago (1 children)

It's ok to vent, you have a safe space here. There's no use pretending everything is okay, but at least we can share our thoughts and feelings in solidarity for one another. Sorry to hear your infection might still be around and your fatigue hasn't let up. Sending hugs, love.

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

After three days of trying to get a GP appointment or see the pharmacist for antibiotics for my infected surgical site, finally I managed to see the pharmacist and get some. It shouldn't be this hard to access medical treatment. And of course the infection has spread in that time.

[–] Keld@hexbear.net 4 points 2 weeks ago (1 children)

Did you get an answer on your blood test

[–] DisabledAceSocialist@hexbear.net 4 points 2 weeks ago (1 children)

No, the only thing she said was that the kidney function was a bit low. Also the TSH was low, but it's meant to be kept low to stop the cancer coming back, so that's acceptable. But she was a nurse and said she didn't necessarily know how to read all the blood tests. She said she would get the doctor to look at it but that doctor never replies or follows anything up. I have an endo appointment in August, I'll ask her what she thinks.

[–] Keld@hexbear.net 4 points 2 weeks ago (1 children)

I guess its good she didn't try to diagnose you based on a blood test she didn't understand. Sometimes when places are overworked nurses will step into more and more of the doctor role until they're clearly out of their competency zone, and it sounds like they're fucked for doctor.

[–] DisabledAceSocialist@hexbear.net 4 points 2 weeks ago (9 children)

Yes, there used to be 4 regular doctors, but three retired recently. Now they have the one regular and a load of locums. It's chaos and awful.

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[–] gingerbrat@hexbear.net 4 points 2 weeks ago (3 children)

Fuck :/ I'm glad you got the antibiotics and I hope they'll help, but seriously, this took way too long

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[–] SterlingPooper@hexbear.net 4 points 1 week ago (5 children)

Idk. I'm having a hard time with people infodumping in that I straight up tune out and start wondering "this has no relevance to me, why on earth are they still talking"

Like I can't pretend to care about something I straight up don't give a shit about. I can't listen to a recommendation and an indepth review of a show that I haven't seen and will never see.

If I were asked, I'd talk about it politely. Like, idk.

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