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disabled @hexbear.net
AshenWolf [she/her, kit/kit's] @hexbear.net

Disabled Community Megathread from April 14, 2025 to April 27, 2025

Hi everyone! That's right, it's time for another c/disabled megathread.

Update on the meds: they work! Quite well, actually. I feel like I'm finally functioning at a reasonable level, like I was not only getting stuff done, but I'm now able to actually effectively multitask (as much as one can lol). I'm quite happy with how it's working, and I might not even need an SSRI at this point. If I'm getting anxiety from the meds, I'm not feeling it, because they actually reduced the amount of anxiety I have to deal with. I don't know how (thinking ADHD-induced anxiety), but yeah, I'm a lot better than I was just last week. Quite happy for that, might actually be able to manage the end of the semester without crashing and burning this time around.

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.

156 comments

  • whenever i call myself disabled my parents r like "nooo don't say that ur doing so much to work on urself"

    and i know thats prob more supportive than most parents r but, man, wish they'd accept reality that it doesn't matter how hard i work, im still disabled lmao

    • Denialism from others about your disability is the worst. It makes it seem like your struggles are not valid and sets an unrealistic expectation.

      • The thing I hate most is when you aren't allowed to be upset about your illness or disability, there is so much pressure put on you to be happy. Whenever I've been down about my situation medical staff and other people will say things like "Stop whingeing, there are people worse off than you," or show me news stories about ill/disabled people who are happy and grateful to be alive and say "Be more like them." It's selfish of them, they just want us to pretend to be happy so they don't have to deal with our emotions.

      • yea, i honestly started feeling better about myself when i realized i cant hold myself to able-bodied standards. but no, im "limiting my potential" or whatever

    • Yeah, I get that now that I've been diagnosed when trying to talk about it with my mum. She used to just go to "well you've gotta be more organized and we all struggle with these things" which is one of the reasons that I've been very hesitant to look into it, and now she keeps saying "They've expanded the diagnosis lately" after diagnosis.

      I know that it is her trying to be helpful in the first case, and in the latter case I think it is her trying to cope with not spotting any of my issues as I was the non-problem child that was very good at hiding my feelings/dissociating (she is an educated child psychologist, but she was studying for that while I was a teen). Still kind of sucks as I feel I cannot talk to her about it since it makes her very sad to hear how much I was hiding from her, which is ironically a major reason I didn't tell her anything in the first place.

  • I don't know if anyone remembers me talking about my awful therapist a few months ago. Thankfully those sessions finally ended, I only stuck it out to help with my benefit appeal. Well yesterday I got an email from some random person at the mental health service, asking how things are going and wondering whether they should offer me another treatment. This was my response:

    I am not sure what the point is.  Your service doesn't ever give me a treatment.  Your therapists just do time-wasting nonsense so they can collect a paycheque.  Last time I asked if I could have something that might actually make a difference, like EDMR and was told no, it wouldn't be suitable for me because it might bring bad feelings up.  So instead the therapist spent each session doing a meditation and telling me to write timetables for myself.  What is this supposed to achieve?  It's nonsense, this is not medical treatment.  Not only is it unhelpful, it makes things worse because I have the stress and commitment of turning up to these sessions each week, while being given absolutely no benefit at all.  The therapist before that around 2019, the entire treatment consisted of being told to write lists of reasons I shouldn't feel bad, and then look at those lists when I feel depressed or anxious and this will magically cure me.  I'm tired of having my time wasted by therapists who don't care and just want their paycheque.  If you are unable or unwilling to give me a serious therapy then just don't bother me any more.

    I guess I'll wait and see what their response is. Part of me is thinking maybe I shouldn't have said this, if this person tells my shitty therapist what I said maybe the therapist will be angry and try to ruin my benefit appeal somehow. She already threatened that if they asked she would tell them I hadn't been to all the sessions.

    And the weird menthol-tingling feeling is back. It probably got missed as it was in a response to a message further down but basically I had a terrible migraine that started off as a menthol-tingling feeling in my crotch, then spread down my right leg, into my right arm and into the right side of my face. After 5 hours in casualty(thinking it could be a stroke or trapped nerve) and a GP appointment it was finally diagnosed as a hemiplegic migraine and a migraine med got rid of it. Now the tingling menthol feeling is back in my crotch.

    Also having trouble changing my own foot bandages, I'll have to see if I can get an appointment with the nurse to do it.

  • zoom classes suck... i was called out today for laughing at an inappropriate time. i kinda just do that bc of the autism when im uncomfortable. so i basicalaly need to police my face and body language for 3 hours straight for basically no reason

    • Just out of curiosity, did they complain bc they heard you laugh or bc they saw you laugh? And also, if it's no doxx, what made you laugh? I get that it's not a humorous type of laughter but like why is it an issue? Laughing is a common reaction to uncomfortable situations, I don't see why anyone should reprimand you for it.

  • :::spoiler audhd & the struggle to learn and communicate / not being given tools to prepare ones self / trying to improve

    I feel like my early interest in reading and writing has helped me immensely, but in comparison I cant really do oral learning & learning in general is very difficult.

    I was taught how to read and write on a basic level (unschooled) and after that it was all on me. So despite not being the most eloquent fellow, I can still use writing to an extent which helps me function - to remember things, to express myself, etc.

    But, there is a limit to that. Everything I write I have to rewrite and double check to make sure everything is worded exactly as I mean it. I can read, but my comprehension can be bad, I have to take my time and really think about whats being said. Sometimes it doesn't make any sense at all, and I have to find someone to explain it to me (but that doesn't always work)

    The way I talk also necessitates this method or else I talk in a very disjointed, unorganized fashion.

    When it comes to conversation -- I am terrible at comprehension. As with reading I must unpack what is being said; which can take a long time, and includes questions.

    The longer the person goes on without allowing me to catch up, the less I understand, and the more I start to forget what is being said and why.

    In situations that require answers, I always have to call them back. I have to mentally prepare an answer; so I don't generally like doing impromptu phone calls.

    Then there is the factor in which I hold myself to a standard that I absolutely cannot fail, which I have been letting myself do lately.

    Its hard because while I have been improving, it feels very slow and almost undetectable. Like the timeline of improvement is such that most people don't even notice it; it seems like you are exactly the same.

    I remember the times when I couldn't speak to anyone, I couldn't express myself through writing, so I definitely have improved -- but still struggle to learn and comprehend in general.

    It's hard to figure out exactly how I can teach myself things. I feel like written, oral, or demonstrative instructions can all be elusive to understand. That I must basically take the idea like dough and shape it in my mind until its something that I can understand.

    :::

  • One pattern some specialists see in long covid and ME/CFS is that it’s often seen in people who tend to overwork themselves and ignore signals of their body telling them to rest. But I wonder if there are actually that many people who don’t do this? Because or whole culture and economical system is built to get people to work as much as possible.

    • the only people i know not conditioned to overwork themselves are those who had a pretty cushy upbringing and then got a high paying job easily

      like mostly people who i met in uni that barely kept up with their classes but still got a job easier than me aaaa

  • A lot of my parents favorite stories about me are just me being very clearly autistic. hahahaha isn't it so funny that you got overstimulated and had a meltdown your third Christmas?

    No it just makes me sad, it makes me sad how many signs I showed and you still did nothing to help me. They've even told me how "lucky" they felt to have our pediatrician, because "a lot of other doctors would have diagnosed you".

    idek how this shit keeps coming up in conversation so often but I hate it. Wasn't even the only example of my very obvious autism that got brought up over dinner.

    • "our pediatrician was great. sure they didnt give you access to the help you needed, but they didn't make us feel uncomfortable, and that's the important thing"

      fucking hate people like that, sorry you have to deal with it

  • Well my achilles tendons are well and truly fv(k£d. Just when I'm coming up to my final surgery and the light was at the end of the tunnel with regard to being able to go back to wearing shoes and walking fairly normally soon. Now I don't know how long this will take - the last time it got so bad I was in a plaster cast for 10 days and couldn't walk properly for months but that was 20 years ago! I thought this issue had gone away. I really think the Universe just can't stand to see me catch a break. Or am I meant to be learning something from all this? I saw a youtube video of a woman who'd had a terrible life and she said she had chosen all the awful things that happened to he before she was born so she could learn from them. Is that just cope? Did I choose all this shit before I was born? Because if so I have changed my mind and would like it to end now. People always say "What doesn't kill you makes you stronger." I don't believe that. I am worn down. As soon as one problem seems close to being solved, another worse one takes its place.

    • chronic achilles injuries are so awful — my right one is severely fucked beyond belief and i’m in the beginning stages of issues with my left (probably from like 10 years of uneven weight distribution falling on my left leg all the time.) i feel like it’s something super overlooked/seldom spoken about in the greater spectrum of mobility issues and i never hear other people talking about it. it sucks and you aren’t alone. please try to hang in there.

      • Thanks. It's just I've been trapped indoors for months since my last foot surgery and finally it healed enough to go out and now this. I feel like a prisoner, I can never go out. I'm so frustrated and it's doing my head in. At least with my foot surgeries I know it will heal after a time but this? No idea if or when it will be better.

156 comments