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Disabled Community Megathread from June 30, 2025 to July 13, 2025

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.

256 comments
  • Anybody else work out just so they have energy to keep their ADHD at bay? If I don’t work out I get so much leftover energy that I’m too hyper to sleep.

    • When my joints don't protest too much, absolutely. Even just a 20 minute walk can really make a difference and slow me down enough to sit still/lay down to sleep.

  • Hey folks. I've never posted in here, so this is a long one. I 'qualify' medically, but I've always been very resistant to self-identifying with my disabilities. I asked my parents to stop posting "I love my autistic child" junk on Facebook back in the day, even though they were well meaning.

    I'm strongly aware of how they influenced my past and current behaviors, what overwhelms me and why, and things like that. But the resistance to the identification is still there.

    I've had some pretty hard falling out with friends recently in part due to my own overzealous nature when it comes to relatively minor injustices, which is a quirk of my condition. I essentially called them out for all playing a new game that directly funds horse racing/animal cruelty and was given a lecture about how tired they are of virtue signaling in response. As a vegan poster, that was the last straw in a sequence of other events.

    So I guess I'm trying to break out if that resistance and see if I would be actually be better off interacting with other ND individuals.

    Has anyone else experienced this resistance and have suggestions/readings on how to get over it?

    I think it used to come from childhood trauma. That my life till now would have been fine if I just had been born 'normal,' that I wouldn't have to dwell on every awkward interaction, that I wouldn't have been so arrogant in college or caused my parents so much grief, etc. A lot of self blame, regret, and self-isolating to protect myself and feeling others were better off away from me too.

    I get that a lot of that now is a societal construction problem, not necessarily an individualized one.

    I don't think I feel that way anymore, but I do still get residual feelings in situations like my most recent one, where my own behavior damages my social relationships, at least insofar as the group dynamic is concerned.

    I'm not sure where the current feelings stem from if not the same thing.

    Tldr; is there a book for people who (previously) hated themselves/their condition and so rejected communities and labels that might have helped?

    Alternatively, something to help temper or more effectively harness injustice sensitivity/righteous anger?

    • im autistic and am basically only friends with autistic people with like, one or two exceptions. i find talking to non-autistic people generally frustrating, and even those im close to I get pretty constantly frustrated that they don't tell me things or assume things i didn't intend.

      as for the injustice sensitivity, it really drives me nuts too and is probably why i am drawn to leftist causes. generally i just vent about it to one of my autistic friends to get it out of my system and disengage when i feel myself getting bothered otherwise. but i'm kinda a people pleaser so i don't have trouble disengaging

      also read unmasking autism that one's good

      • Appreciate the response. I think that's part of my issue is that I only really had one group of friends, so I didn't have separate people I could vent to, others to play games with, etc and kind of compartmentalize that. Definitely a lot of unintended meaning going around.

        I do plan to start reading that book, it's already on my ereader.

    • Welcome in! I'm gonna try and respond as best I can, please let me know if at any point I'm unclear or come off in a negative way.

      Hopefully that's not too ramble-y, and I hope that answered some of your questions.

  • Haven't been very active the past couple of days as my laptop charger died, but someone came through and helped me get a new one.

    It seemed OK at first but then I had a bad 24 hours after my surgery, much more bleeding and pain than usual, but it seems to have died down to a normal amount of oozing and not much pain now. And they had a cancellation so they've moved my next surgery forward to the 24th.

    But for the past few days I've had endless tingling and pins and needles in my legs and feet. I don't think it's related to the surgery. I'm wondering if it's related to my hair loss as both these things started very recently. So bloody difficult to get medical help these days though.

    And to top it all off: I mentioned a while ago that I take an anti migraine med that can cause autism and ADHD in your child if you get pregnant while taking it. For this reason the government now says women who take this drug must also take birth control. I had a big battle fighting against having to take birth control and I thought it was finally over - now they've started sending me messages demanding I make an appointment to get birth control, again! I am furious. I am asexual, I am going through perimenopause, I'm a stroke patient so hormonal birth control would be very dangerous for me and I don't want a coil - being forced into a painful and degrading medical procedure against my will. This is sexual discrimination plain and simple. Just because I'm female I have to take drugs I don't want or have my migraine meds taken away? Not to mention the fact that society must really hate ADHD/autistic people if they are this desperate to stop them from being born.

    I have written to my local MP to complain about this but he is useless, I'd be amazed if he even replies.

    • glad you got a new charger!!

      god that thing about birth control is absolutely crazy. i started taking birth control again (for pcos, im also ace) and that shit sucks ass. i just love that the government can control a woman's bodily autonomy like that. and it's over ableism too. absolutely disgusting nonsense

      • Yeah I mean, blood clots, strokes, cancer, thyroid problems and headaches are just a few side effects of the pill but hey, it's better to suffer that than to bring an autistic child into the world!

    • Hey love, I'm glad you got the charger situation resolved

      As to the medical stuff, holy shit, not even recovery lets you rest up, does it? I hope getting the blood work will turn something up concerning the pins and tingles. Take care.

      • Thanks.

        Yeah now I've had another thought. I'm wondering if this tingling could be some adverse reaction to all the local anaesthetics I've had in my feet these past few months. I suppose I'm going to have a battle getting a doctor's appointment and they might be as useless as the doctor I saw last week and do nothing.

  • I'm pretty sure I'm officially in burnout because of work. Last shift, I had a guy take 40 or so stops off of me but still got done when I normally would. Had I not gotten help, I'd have been out until 7pm. That shift was exceptionally bullshit though.

    I hate that I've been writing code on and off for 10 years but haven't had a programming job long enough to be worth looking at. I have a portfolio and active github(both linked on my resume) but am consistently getting denied interviews. I just want to make websites because I'm decent at it. But no one local or remote wants to even bother with me. And like, even if I do land a decent paying software job, at this point retirement isn't even an option. I'm now mostly just looking for something that is steady enough to live off of until I die.

    I have 4 mobile apps on the Play Store. I have over a dozen websites I've made in the last year, 3 of which are actually live and being used. I'm not sure how big of a portfolio I need at this point to even be considered. I think next week I'm gonna make a fake resume that claims I worked for years at several now defunct companies doing web stuff and see where that goes. Idk. Life just sucks. Ever get the hint that you should just accept your shitty existence for years but still try to ignore it? Not great on your mental health.

    • It is literally always moral to lie on your resume. If you've got any buddies who work in the same field maybe you can use the to vouch for your lies too? You've clearly got the qualifications the issue is getting a foot properly in the door, and that's some bullshit

      • My only friend in the field is pretty by the book on stuff so probably wouldn't lie if I use him as a reference and stuff. I do have a friend that offered to be a reference but he doesn't know the first thing about tech.

    • Your resume sounds downright impressive, honestly. Job hunting is so awful, and I'm starting to think a lot of places are just auto-rejecting applications and they don't even get seen by real people. It can really feel hopeless sometimes...most of the time, really.

      I'm so sorry work is sucking out all your energy, too. It can't be easy juggling all the things you do. I hope you can get some rest and find some time to chill and just recuperate. You deserve a break.

      • I sent my 6 months feelers out asking my various groups if they have any leads. An actual Israeli zionist lviing in Israel in my horror movie discord group suggested I use Indeed. My reply was that over the past 3 years I've probably applied to over 1,000 jobs on there but thanks anyway. The guy has had a stable job since day one though and doesn't get fired or quit once every 12-18 months from autistic burnout like me. Must be nice being so successful. But also death to Israel.

        I've probably also applied to another 500 or so jobs on the various other job posting sites. No one wants me, and I can't even do freelance correctly since no one wants to pay for a website.

    • Roux, you need a break, like a serious one. And while I hope cheating on a resume helps getting you a job, I really do wanna stress that an actual break/vacation/time off without obligations, whatever you wanna call it, is probably the most important thing with the load of bs you have to deal with. I don't want this to sound patronizing, I'm really worried (and also grateful to the guy who helped you out). Please take care of yourself, and I wish I could do more than send you a hug

      • Last time I went on vacation I started a business

        But for real though, I kind of wanna give it all up and stop organizing because it's all turning to shit too. I made the joke a billion times but I almost just want to go start a commune away from all the bullshit of being oppressed in a capitalist society. I'm tired, boss.

  • Does anyone have recommendations for jobs that don't require customer interactions? I used to work as a kitchen porter and I liked that, but then I got moved to the bar and I hate that. Being a bartender is exhausting and people are so entitled and rude.

  • So I found out I’m not Autistic and it was a misdiagnosis for childhood trauma. I feel a little vindicated for that time I went to ABA training and the trainers would ask me why I was even there. But it also sounds like I have a much bigger mental hurdles to jump over.

    • It's interesting how trauma and a lot of disorder symptoms can overlap and manifest in similar ways. Hopefully the clarity around it can help with that part of your healing journey going forward.

    • I am happy to hear that you learned something so important about yourself. Like un_mask_me said, I hope your healing journey will be more accessible to you now that you know. That feeling of vindication must be bitter sweet.

      Take care, friend, I believe in you

  • I started feeling terribly dizzy this afternoon. The room was spinning. This happened before when I had a hemiplegic migraine, but I had no other symptoms. I was even worried I might be having another stroke. Don't know what was going on with that. Got my next foot surgery tomorrow morning.

    • I hope the surgery went well and your dizziness didn't return. Take care

      • Thanks. Just got back from the surgery, it went fine. The staff were nice, ones I hadn't seen before. Although I got the dreaded question, "So what do you do?" And had to say "Nothing at the moment," and then justify it by explaining all my health issues, but these were some of the rare people who accepted I couldn't be expected to work in my condition instead of being judgmental about it. Although they did do the whole "You'll get better soon," thing, and imply that I can get back to work eventually. Why is our society like this? No matter how insurmountable your health issues society can never just accept that you're on the scrapheap, work-wise. There always has to be some undercurrent of "You should be working."

        And don't even get me started on "So what do you do" being the standard conversation opener for everyone, everywhere, always. Always immediately judging and classifying someone by their job. Are we really so unimaginative that we can't think of another way to start a conversation with a stranger? How about "So what music do you like? Been anywhere nice lately? What's your favourite film?" I mean, literally anything that is about an individual's personal interests rather than how productive they are to capitalism and where they fit on the social respect scale.

  • I made a post here months ago about how I saw a book I owned being sold on ebay for over £100, so I tried to find my copy to sell, with no luck. It's just happened again. I saw a book I've had since childhood going on ebay for £115, so I tried to find my copy, and I swear I remember seeing it on my bookshelf last year but now it's gone. I did have my stuff moved out of my room temporarily last year as a builder came to fix a damp mouldy wall. Maybe it got lost somewhere while being moved. Why does this keep happening? And how? Two builders carried the bookshelf, with all the books in it, up to the attic and then back down when the repair was complete. It's not up there and I watched them do it, nothing fell off. Things must just dematerialise into another dimension.

    • I am absolutely certain this is also the dimension the socks from the washing machine disappear to.

      Joking aside, I sympathize with your frustration. The books can't be gone, not really at any rate, and I'm sure they turn up eventually. Probably when you least expect it.

  • 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.

    • 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

      • 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!

  • 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.

  • I am not quite sure where to post this, so I'd prefer to share it with you lovelies. The healing journey is on a good way and while I've had setbacks, it's still going well. However

    I got a mail two days back that my storage compartment (for quite literally everything that I own, since I don't have my own apartment atm) "possibly took some water damage". As it turned when I went to check, the only thing that didn't get damaged was my box of memorabilia and books, some of them aren't even available for purchase anymore. While that was a huge load of my shoulders, my entire bed, including the mattresses, is a huge fucking sponge. A couple of other things got damaged too, which leaves me with having saved a box of books and mementos, two boxes of dishes and kitchen stuff, a chair and a cheap footrest. I don't own much beyond that, and it's never really bothered me, but I would've preferred to keep the bed. It was really nice.

    I filed a damage claim offered by the company who rents out these compartments and if all goes well, I should get compensation for the entirety of the broken stuff. But, you know, paying nearly a 100 bucks a month for 2 years to store something securely, I'm pissed that it wasn't secure. Not gonna get that money back, and it wasn't even enough to get all my stuff back.

    Worst part is that I just feel numb about it. I nearly lost my most precious books and mementoes, and my only reaction was to write the damage claim.

  • 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.

    • 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.

    • 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.

  • I wish people would stop popping off live rounds with the fireworks

    • I hate this behaviour! Hope they pipe down soon. Maybe some earplugs would help?

      • It stopped around 3am, thankfully. Weirdly enough I struggle to wear ear plugs because my ear canals are incredibly tiny, not even surgery could widen one of them. I do use a noise maker app that helps a lot!

    • I've never heard an actual gunshot in my life, but I can totally imagine how terrifying it must be. Hope you got through the night alright

      • Guns are part of the 'culture' where I'm at, and you learn to pick out the differences. The scary part is knowing the idiots firing off during the holiday are wasted and/or high. Made it through okay, but I am tired this morning. Really hoping there isn't more of it tonight.

  • Trans Sisters Attacked – Need Urgent Help

    Hey friends 💙,We were attacked in our camp just for being trans. Our shelters burned, and some of my sisters were hurt. We covered hospital bills, but now we really need help finding a safe place to stay in Juba.

    We’ve raised $102 so far, but still need about $700. Any share or donation means the world to us. Thank you for being here. The mutual aid Link is in my profile.thank you for taking time to read this 💙🙏🏿....

  • @[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.

  • so anxious and overstimmed i feel feverish

    my parents got a new puppy and im helping train it and take it out at night and stuff and oh my god i am having such bad executive dysfunction because of that, it's pretty pathetic my brain sees i have to do something like 4 times a day and absolutely explodes

    • I wish I could explain this to people, like my brain makes my body feel physically uncomfortable when this happens and the spoons dry up so fast. At least the pupper is worth the effort and discomfort. Animals are awesome, how old is it?

    • Puppys are adorable, but they're also a load of work, and that's already hard on people without executive dysfunction. I feel for you, and I hope you have/find an outlet for the overstimulation.

      Is the puppy cute at least to make it a tiny bit easier?

    • Sorry to hear that. My landlady has a tiny dog and although I do suffer with executive dysfunction I found the dog actually helped with that. It gave me something to get up and go out for. At least until my ankle injury and foot surgeries put a stop to that. If you get in a routine with the dog you might find that instead of avoiding it, you start to really enjoy it.

  • you are beautiful, you matter, and you are loved

    And so are you

    thank you for the new mega

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

      • 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?

  • ::: spoiler neurospice adventures continue In a vicious cycle getting used to Adderall again. Today I wasn't able to shower or get dressed, but I sent two job applications (something I have been putting off) and am going to try to get to the store for some actually filling foods.

    So much pent up energy and it's like the walls of my mind palace are all swaying back and forth. My emotions are calm again, though, as much as I'm struggling to physically do things.

    The time honored tradition of laying on the floor has been deeply helpful. Today, this is productivity. If I don't eat, I will always be hungry. :::

256 comments