Disabled Community Megathread from June 30, 2025 to July 13, 2025
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257 comments
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.
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
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.
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.
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.
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.
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.
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.
I'll put you in charge as soon as I figure out who needs to be complimented out the door. This is disgusting.
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.
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.
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
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.
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.
Thanks, although I always feel I would be better off dead.
Spatone is a supplement that comes in boxes of sachets:
I've used spatone on and off myself in the past, it's good. It is absorbed well and has never given me any side effects. You put one or two sachets in a glass, add some orange juice for vitamin C (to help absorption) and taste (the spatone tastes metallic) and chug it down.
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.
Thank you.
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.