Disabled Community Megathread from June 30, 2025 to July 13, 2025 (hexbear.net)

submitted 2 days ago by [email protected] to c/[email protected]

53 comments fedilink hide all child comments

If you carry one thing with you today, let it be this: you are beautiful, you matter, and you are loved.

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.

top 50 comments

sorted by: hot top new old

[-] [email protected] 4 points 7 hours ago

I got the blood tests done today. I googled "hair loss blood tests" and wrote a list of them all. I gave the list to the nurse, well phlebotomist. They actually now have a dedicated phlebotomist at the surgery which is a new development. They've just started doing it by computer now. You used to get a paper form for blood tests and the doctor who ordered them would tick each box they wanted you to be tested for. But now they have to click each one on a screen. She hadn't heard of some of these tests and was having trouble finding them on the screen. I started to worry that maybe google was wrong, maybe these tests aren't real and I would get caught out.

She asked "Who ordered these?" I said, "The endocrinologist." She said "I can't see anything about that on the computer." I tried to think of an excuse for that and said, "Oh, uh....um...I...it was a follow up phone appointment. They just told me to get these done before my next face to face appointment." That seemed to make sense to her and she accepted it and eventually managed to find the tests on the computer and did them. I guess the endo will wonder what's going on and why they're sending all of these random test results over.

This is the deviousness and subterfuge you have to go through to get medical help in this country.

load more comments (2 replies)

[-] [email protected] 6 points 16 hours ago* (last edited 16 hours ago)

Insomnia is like an extra curse. When you're unwell or having an awful life you'd like to sleep more of it away to make it pass faster but the universe says "Akshully....no. I'll make you sleep LESS so you have to endure even more of this shitty, miserable life!"

[-] [email protected] 4 points 12 hours ago* (last edited 12 hours ago)

I feel this, it's like doubling down on all the crap you're already dealing with. Bonus if you get nightmares too! Hope you can get some rest soon, comrade, and some answers from your upcoming tests/ appointments.

[-] [email protected] 2 points 7 hours ago

Thanks you. cuddle

[-] [email protected] 2 points 14 hours ago

Stress hormones are a pain in the ass, especially when it comes to sleeping. I feel for you cuddle

[-] [email protected] 3 points 7 hours ago

meow-hug

[-] [email protected] 3 points 16 hours ago

Well, after multiple calls and pleading, I finally managed to get booked in with the endocrinologist on 4th August. Although it's a month away, given the state of the NHS and general difficulty of obtaining appointments now, I feel lucky and relieved to be given an appointment at all. They seemed unwilling to give me one until I mentioned my hair is now falling out and then they booked me in. I'm getting my blood tests today so the results will be available by then.

And today the British government voted to cut disability benefits. Just another reminder that we are seen as a worthless drain on society and are blamed for single handedly bankrupting the country.

[-] [email protected] 4 points 14 hours ago

Good. Not about the benefit but the call. I'm glad to hear you had success.

[-] [email protected] 2 points 7 hours ago

Thanks.

[-] [email protected] 3 points 14 hours ago

You got the appointment meow-bounce

And obviously: ukkk

[-] [email protected] 3 points 7 hours ago

Care-Comrade

[-] [email protected] 5 points 1 day ago

Spoiler

Too scared to call to set up a consultation for therapy.

Too scared to apply for jobs because they'll call me back and I have to be ready to talk on the phone.

People here are getting sick of me, when I thought opening up about mental health/gender issues would help me. I thought I would eventually connect with others who face similar things but that hasn't happened yet.

I don't know if there is "solving" this by myself. I really believe in having friends who are going through what I'm going through. People say they're happy, even comfortable not being perceived, and I think that's fucking sad. I want Depression friends. I want Gender friends. I'm not scared of these thoughts within myself. I want to be able to be there for people.

I don't think people on Hexbear like how much I talk about it, like I'm supposed to be a rugged queer cowboy with my rugged little individualism. It reminds me of, well, bootstraps logic.

"just pull yerself up by yer rainbow bootstraps and solve your life, queen!"

[-] [email protected] 2 points 12 hours ago

Hugs if wanted <3

Any chance you can ask for a chat-based or email only consult with someone? It might make the process easier, but I empathize with the anxiety around phone calls. I wish there were some short cut or accommodations that made access to getting help with stuff like this less "bootstrap-y" as you called it, but my experience is that there almost never is unless you have the money to throw at it. I really feel it's all designed to be unreachable for anyone who can't fit the mold or jump through the hoops correctly. Hope that's not too doomer or unhelpful of me to say. It takes a lot of energy and mental capacity for a lot of folks who just don't have those resources readily available, but that doesn't make it their fault. It personally helps me to know there are still people out there fighting for a better world than what we've been given, and that a lot of those people are right here on this little site.

As to the friends stuff, I'm hesitant to comment because I'm afraid of sounding insincere or burdensome and I want you to feel heard. My own baggage around friendship makes me incredibly paranoid about over sharing or saying the wrong thing, no matter how much I want to connect with people. If you want to DM me, though, I'm always willing to try.

Hope you're doing better today, comrade, and that you continue to hang out and share with us. Not everyone has a plethora of spoons to respond all the time, but know you're welcome here and we're glad to have you.

[-] [email protected] 9 points 2 days ago* (last edited 2 days ago)

Hey loves,

I just had to come here and share this amazing update with you all, we did it! We got the full amount to cover my sisters’ hospital bills. Thanks to your support, donations, shares, and kind words, they’re safe in the hospital now and getting the care they need.

I can’t even explain how much this means. It was such a scary time, and you all showed up for us in ways I’ll never forget. Your love and solidarity honestly saved lives, and I’m so, so grateful for this community. 🙏🏿

Right now we’re focusing on helping them heal and trying to find somewhere safer to move so we can start to feel okay again without living in fear.

If you still want to support, my mutual aid link is in my profile but today I just wanted to celebrate this big step forward with you and say thank you from the bottom of my heart. 💜

Seriously, thank you, thank you, thank you.

[-] [email protected] 4 points 2 days ago

Amazing news, darling! Thank you for sharing, we love having you. Hopefully you can find that safe space and healing soon. Wishing your sisters a speedy recovery

[-] [email protected] 4 points 2 days ago

Thank you so much, love ❤️ Honestly, your words really lift me up. We’re just trying to take it day by day, and having people like you rooting for us makes all the difference. I’ll definitely keep you updated. Big hugs back to you!

[-] [email protected] 9 points 2 days ago

I hate how difficult it is to get a GP appointment in the UK. As I mentioned in a previous post, a few days ago I woke up to find a small bald patch right at the front of my hair. Today there is another one. I'm also having trouble treating the infection that has spread to my hands, the usual ointment isn't working. So I want to see a GP. They have a new automated system that is so convoluted you need to be an IT expert to ask for an appointment on it. I can't get it to work so I had no choice but to actually go there first thing in the morning and queue up with all the other desperate people battling for an appointment, which in itself is an issue with my mobility problems and lack of transport. (They don't take phone calls for appointments any more). Eventually I got to the front of the queue and asked for an appointment, and the receptionists always makes you declare what is wrong with you in front of everyone, so they can decide whether you are worthy of contact with a doctor or not. I felt too embarrassed to announce I'm going bald and riddled with infection in front of the other people and I had to plead with her to let me see a doctor without telling her what's wrong with me. Eventually she agreed I wouldn't have to tell her, but now they've changed the system so the receptionist can't even book you an appointment. All they can do is add your name to the triage list and at some point during the day a doctor will phone you and decide whether you are worthy of an appointment or not.

This is because the GP won't see people for almost anything now. If you have any kind of muscular-skeletal issue the GP won't see you. You have to refer yourself to the physiotherapist and be on the waiting list for 4 months for an appointment. If you have an infection of any kind the GP won't see you, you have to go to the pharmacy and get antibiotics direct from them. And a whole list of other things they won't see you for but tell you to go elsewhere. According to a news article I read, there is a shortage of 4200 GPs and only 12% of appointments are now fact to face. It's like they make getting an appointment so difficult to put people off even trying. The NHS is absolutely falling apart and it's just another problem that makes life more exhausting and stressful.

[-] [email protected] 4 points 2 days ago

Just catching up, and my god. I don't want to chime in on the symptoms and stuff, but the way you're being treated is atrocious. I really hope you can get the help you need soon, love, and that you aren't in too much pain. Sending hugs. Get some rest if you can.

[-] [email protected] 5 points 2 days ago

Thank you.

cuddle

But accessing medical treatment and prescriptions seems to be getting more difficult all the time rather than better. Even a couple of years ago news reports and medical professionals were already stating "The NHS is collapsing." It's in freefall now. I'm so tired by the amount of effort I have to go to just to get my prescriptions and basic medical help. Not to mention having to beg for financial assistance here whenever I have another foot surgery and the NHS won't pay for the bandages. The entire thing just seems unsustainable. And it doesn't have to be like this, it didn't used to be this bad. In fact some people say the government are running it into the ground on purpose because they want to privatise it, because some of them have financial interests in private medical companies.

[-] [email protected] 3 points 2 days ago

I hear you, love. It shouldn't be this hard.

[-] [email protected] 4 points 2 days ago

This is deeply depressing to read. I don't even want to begin to imagine how horrible this must've felt, waiting in line only to be asked to announce your issues in front of everyone. I'm glad you got around it, but the rest isn't looking too promising either. The NHS is really falling apart, but no longer in slow motion. If nothing else, I hope your phone call is going to be more productive.

The bald spots don't sound too good either. I've been trying to get an appointment for my rapid hairloss for more than a year and that's already stressing me out, I can't even begin to imagine how terrifying this must be for you. I really hope there's a quick and easy solution for this problem at least.

Out of curiosity, and only if you feel comfortable talking about it, what is this skin infection and do you know where it comes from? Like, what makes it appear and spread?

Please hang in there, love, we're here to listen if you need to vent or just want someone to listen meow-hug

[-] [email protected] 5 points 2 days ago

I finally managed to get a face to face appointment. It wasn't good. Most of the regular doctors I used to know have retired, and the surgery has struggled to fill the vacancies, so on the rare occasions I can see a GP I get a random different locum each time. This one didn't GAF. About my hair he said there's nothing he can do but prescribe a steroid treatment and wait and see. I asked for tests - blood tests for instance, to check if it's a deficiency or a hormonal problem. He said nothing to do with hair loss would show up on a test. But I googled it when I got home just now and that is a bloody lie. You can do blood tests to check for a cause of hair loss. He even said "My son's girlfriend has lost all her hair and we don't know what caused it. There is nothing you can do but wait and see." I'm thinking I might get around this by requesting blood tests and saying the endocrinologist requested them.

As for the infections, I get open ulcers on my feet, it's a side effect of cancer treatment and the treatment has also caused me to lose multiple toenails which come off leaving an open wound. These ulcers and wounds get infected with bacteria and fungus. Because I'm immunocompromised I haven't been able to fight these infections off with antibiotics or antifungals. Eventually it gets so bad and spreads so much all that can be done is debride the areas, cut away the infected and dead tissue to give it a chance to heal. I also have eczema, which mainly affects my hands, and my previous eczema cream got discontinued. Despite repeated letters to the GP they still haven't prescribed an alternative. So my eczema has gotten so bad on my hands the skin has cracked open. Then I have to touch the infected feet to rebandage them and the infection gets into the broken skin on my hands.

Do you have any idea what has caused your hair loss? What kind of pattern is yours in? My hair has been receding a bit at the front and sides for ages, but I'm used to that and that is a known side effect of my thyroid treatment. What's new is these bald circles suddenly appearing on the top at the front. No idea what's causing this.

[-] [email protected] 2 points 2 days ago

I can only mirror what Keld already wrote, any doctor should want to run blood tests. What the actual fuck was that appointment, love, I'm so sorry you're being treated like this. And yes, get an endocrinologist to ask for these tests. There's gotta be something somewhere that isn't right and that they can measure.

The infections sound vicious, and I'm sorry again that you have to endure this time and time again. Is there no treatment at all that would prevent the ulcers and eczema from appearing in the first place? And if these are known side effects, shouldn't there be treatment plans ready? I'm sorry, I can imagine you had this conversation before and are probably fed up with the lack of answers you're getting.

My hair loss hasn't really been diagnosed yet. My doctor did a thorough blood analysis and told me it could be my iron deficiency, yet even after a year of taking supplements and changing my diet to include more iron (which is almost impossible with celiac's disease), my scalp is still itching and flaking, and my hair falls out rapidly all over my head. It's very thin and most of the volume is gone by now. I finally managed to find a dermatologist and got an appointment for October. Nobody will see me sooner. Meanwhile, I'm trying not to scratch my scalp. cri

[-] [email protected] 3 points 1 day ago

Thanks. I managed to get an appointment for blood tests tomorrow. The only reason they gave me the appointment is because I lied and said the endo had ordered them. I'll google a list of hair loss blood tests tomorrow and take it and say that's what the endo wants. As far as treatment plans, I have never had one for anything as far as I'm aware. They just treat whatever the issue is and then I'm discharged and left to my own devices until it comes back. This is for everything.

Have you tried Spatone iron sachets? It's spawater that's naturally high in iron.

[-] [email protected] 2 points 1 day ago

As far as treatment plans, I have never had one for anything as far as I'm aware.

That is a huge issue. Especially with cancer and the complications you have, there very definitely needs to be a treatment plan, if only to be able to avoid certain complications. I wish you the best of luck with the blood tests and I'm keeping my fingers crossed that they find the cause of your hair loss.

More generally speaking, it's disgusting to think how many of your problems could've been avoided with proper aftercare. It's not like you're not trying to take care of yourself, and with the right treatment, you could've been just fine, and I hate how much quality of life and health you lost because of negligence and "cost cutting" in the healthcare sector. You deserve better than that

[-] [email protected] 3 points 1 day ago

It took them 3.5 years to diagnose the cancer in the first place. My symptoms were vague, mainly tiredness and brain fog. They tested me for anaemia and viral infections. When those came back clear they refused to test for anything else. They said I was "too young for it to be anything serious." So for the next three years I kept going back and first they said it was depression and gave me antidepressants. When those didn't work they said maybe it was chronic fatigue syndrome/ME. Then I just got called a hypochondriac. At the time I was working as a carer in a nursing home, and my employer decided to give the employees private health insurance as a perk. I eventually found a lump in my neck and used the private insurance to go to a private hospital to get diagnosed. So it wasn't even the NHS that diagnosed me. When I could no longer work I had to go back to the NHS as I could no longer have the private insurance.

A similar thing happened with my stroke (a side effect of the cancer treatment I wasn't even warned about). If I'd been treated promptly I might not have been left so disabled. But it took so long on the NHS waiting list to start physiotherapy that the damage is done.

[-] [email protected] 3 points 1 day ago

My point exactly, you got fucked, and you deserved better. God I wanna slap everybody who didn't take you seriously, even though that won't change anything. I'm so glad you are still here, despite the odds.

And I overlooked the iron water question, sorry. I tried getting some here but there's no brands available, and ordering water online is too expensive. I have supplements that work, however my Celiac's makes it hard to absorb much iron from the food I'm allowed to eat. The iron levels are rising, but my scalp does not seem to be happy either way.

[-] [email protected] 3 points 1 day ago

Thanks, although I always feel I would be better off dead.

Spatone is a supplement that comes in boxes of sachets:

https://www.amazon.co.uk/Spatone-Supplement-Original-Iron-Rich-Relieves/dp/B0C2HV6Z1W

load more comments (2 replies)

[-] [email protected] 3 points 2 days ago* (last edited 2 days ago)

He said nothing to do with hair loss would show up on a test.

That's like five kinds of wrong. I know because I have carried that blood from point a to point b. Now he's probably right that you can't diagnose hair loss by blood test, I'm not a doctor yet, but you can check for hormone imbalances or vitamin deficiencies or immune system function, which as a chronic patient with thyroid problems and a restricted diet you should get tested anyway. Your GP here is bad at his job. Like objectively. He should want those blood tests done, you should be tired of getting them. I hate your GP.

I'm thinking I might get around this by requesting blood tests and saying the endocrinologist requested them.

Great instinct, endocrinologists love blood tests. But you don't even have to lie on this one, If you have any appointment with your endocrinologist and you mention that you're losing hair and suffering parasthesia or dysesthesia they should absolutely get you a blood test. I quite frankly assumed you were already getting these blood tests.

[-] [email protected] 4 points 2 days ago

They regularly test my T4, T3 and TSH. A few months ago they also tested my blood count and blood sugar, at my request as I was feeling even more tired than usual. They only tested the vitamin deficiencies a long time ago after I fainted in the street and told them I hadn't been able to keep myself fed. But they never check other hormones. And they are requesting I have these tests less and less frequently, as the doctors who used to work there full time have retired and now it's just a load of random locums who work there for a day then are gone. And the local hospital is so booked up that my endocrinology appointments aren't anywhere near as frequent as they should be, and they often just do phone appointments now. The whole NHS seems to be trying to keep patients away as much as possible. If you aren't actively dying right this second, they aren't interested.

[-] [email protected] 3 points 2 days ago* (last edited 2 days ago)

Yeah the t7-tsh is the standard thyroid panel, but you're an immunocompromised person with cancer and a restricted diet, you're the poster child for blood tests. Beat the drums for your own healthcare is all I can say, advocate for yourself. Send emails, call every office, make yourself a huge nuisance, and don't feel bad for even a second. This is your health and they are utterly failing. These doctors should all be fired if they're not willing to help you, but sadly I'm not in charge of hiring and firing.

[-] [email protected] 4 points 1 day ago

Thanks. I've got a blood test for tomorrow, as far as all the other things I'm just tired. It's too exhausting dealing with being ill, fighting benefit appeals, fighting for meds and appointments, and constantly having to scrounge and beg repeatedly for food on here. So I can't mount a huge fight over this but i'll ask for an appointment. The endo is shut today but I'll ask for an appointment when they reopen. It's so hard now though, another problem with the NHS is specialists always try to give phone appointments rather than face to face now. It's much harder to have a proper discussion like that, and I don't feel I can say everything I need to say as I'm worried about people like my landlady and her guests overhearing my private medical details.

[-] [email protected] 2 points 18 hours ago* (last edited 17 hours ago)

Part of being a zealous advocate for your own health is being willing to be open about your needs and symptoms. You have nothing to be ashamed of with regards to your health. And you need to be able to say what you need in the context you are in. If you can only communicate by phone you need to be able to say what you need over the phone. It's not ideal and it may feel humiliating, but it's the hand we are dealt as patients. Duck into your closet and call when your landlady isn't home if that's what you need to do, but do call and do say what you need.

I know that's all easier said than done.

[-] [email protected] 4 points 2 days ago

I'll put you in charge as soon as I figure out who needs to be complimented out the door. This is disgusting.

[-] [email protected] 4 points 2 days ago

@[email protected] TY homie, so it's as i feared that there aren't really any great shortcuts around the legwork re: adhd meds, though i appreciate the tip about asking them to check other locations at larger chains. i'll start making calls tomorrow and hope for the best... stalin-stressed

appreciate you!!

[-] [email protected] 4 points 2 days ago

Good luck, comrade! Hope you get a quick response.

[-] [email protected] 3 points 2 days ago

you are beautiful, you matter, and you are loved

And so are you meow-hug thank you for the new mega

[-] [email protected] 2 points 2 days ago

Thanks, love. How's your healing goin, everything still on the mend?

[-] [email protected] 3 points 2 days ago

cuddle

I'm doing okay-ish. I'm in pain again, had a couple of very rough days and don't feel too hot. Called my doctor to get another appointment for the pain, now I have to wait until next week. Thankfully, the pain decided to recede a tiny bit when I got the appointment, so I guess my body is just saying "We got you, if the doctor can't help sooner, we'll just chill out."

But enough about me, how are you?

[-] [email protected] 3 points 16 hours ago

Sorry to hear this. It sucks being unwell and having to struggle to get help. meow-hug

[-] [email protected] 3 points 14 hours ago

Indeed it does cuddle thank you love

[-] [email protected] 2 points 1 day ago

Oh no, sorry to hear the pain flared up again, was really glad to hear you were on the mend last time. Hope you can get some rest and relief in the meantime, and take it easy.

I'm doing alright this week, just not sleeping at all heh. I did finish my crochet octopus, and discovered the yarn glows in the dark. Imagine my surprise putting the lil thing on the shelf, turning out the lamp and seeing it glowing like a piece of kryptonite! It brings me joy, so I'll share it with the hope it makes you smile, too. Just need to name it now. Appreciate you askin after me. :]

pics

[-] [email protected] 3 points 1 day ago

I'm optimistic that it'll end well, and it's not just going downhill. I'm trying to think of this as a temporary setback. But your lack of sleep doesn't sound good :/ you know why you have troubles falling/staying asleep?

Oh gosh, the octopus is so adorable, I want one too! lenin-heart it's such a lovely little thing and it makes me smile too. As for names, how about "Captain Rufus Eightarm"?

[-] [email protected] 2 points 1 day ago

Hopefully it's just a part of the healing process, sending you some positive energy, love. And Captain Rufus Eightarm it is, haha, I love it!

It's normal for me to go through long bouts of insomnia/trouble sleeping. I figure it's part of the ND alphabet soup I've acquired, since I've had issues with it as far back as I can remember. Not having a schedule while I job hunt lets me at least grab a couple hours here and there, so that's a small positive.

[-] [email protected] 3 points 1 day ago

I hope so too. The hot weather certainly isn't helping cri but thank you, and aye aye, Captain!

The insomnia is nasty, and you're probably right about the ND alphabet soup being a cause. I hope you can find some solid sleep soon, and hey, if you can get some shut eye inbetween, that's better than nothing. cuddle

[-] [email protected] 3 points 12 hours ago

This heat is bonkers! Thanks for the well wishes. Sending hugs and a cool breeze your way <3

[-] [email protected] 2 points 12 hours ago

And may the cool breeze reach you too!

[-] [email protected] 3 points 2 days ago

@[email protected] The thread got locked before you got a response, just wanted you to know that I saw your comment and wanted to check in. Supporting someone who struggles with addiction like that can take such an emotional toll, especially when you're close and care about them deeply. Please know that you deserve to feel safe and secure with those around you and that your mental health and well-being are just as important. Hopefully you can get some rest, find some peace, and get to an end of that job hunt soon.

load more comments

this post was submitted on 30 Jun 2025

29 points (100.0% liked)

disabled

224 readers

24 users here now

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:

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.
Follow the principles of disability justice, as outlined in the link above.
Zero tolerance for ableism. That includes lateral ableism. Ableism will result in a ban.
No COVID minimization.
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".
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.)
Please CW and spoiler tag discussions of ableism.
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.
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.
Follow the Hexbear Code of Conduct.

Let's kick back and have fun!

founded 8 months ago

MODERATORS

[email protected]