I finally got a cane! It’s not really the mobility aid I would benefit from the most (that’s an electric wheelchair but I’m so intimidated by the process to get one of those sob) but it’s a first step and I’m still excited. How is everyone else doing?
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.
Ivysaur - 10mon
it's wednesday somewhere
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DisabledAceSocialist [comrade/them] - 10mon
Speaking on lemmy about how I had to pay for my own medical supplies because the NHS wouldn't pay for them, I had an American poster, who'd recently had to pay out of pocket for some health expenses, tell me "Well if you were in america you'd have to pay for everything yourself," and I'm paraphrasing but basically it seemed like he thought I should be grateful I get anything on the NHS. His attitude seemed like I should stop complaining that I have to beg on here for medical supplies, stop complaining that i ended up in hospital because i couldn't get a doctors appointment when I needed one. Stop complaining because americans have it worse. I don't understand why someone with an attitude like this is even on a socialist/communist forum. I don't think we should be grateful for getting less than we need from our governments, for struggling so hard to get the basic essentials. We should all be outraged on behalf of each other that we have to struggle like this, not whingeing "Well i have it worse!"
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hexbee [she/her] - 10mon
Same vibe as "well if I had to pay back my loans, then nobody deserves loan forgiveness"
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Belly_Beanis [he/him] - 10mon
That's not even true in every state lmao. Medicaid, while being generally garbage, will still cover a lot of stuff like bandages, emergency room visits, etc. so long as you have total disability. They won't cover some types of medication deemed "unnecessary" (whatever the fuck that means) or specific supplies like lubricant for catheters. But it's not literally everything coming out of your pocket.
I had to wait more than a few months to get my tooth fixed and I'm maxed out again for the year so if I have anymore damage to my teeth I'll have to wait until 2026 or pay for it out of pocket. That's still better than not having bandages for a potential infection which could actually kill a person.
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CupcakeOfSpice [she/her, fae/faer] - 10mon
Had a conversation with my mom where I expressed concerns such as my muscles clenching all the time, an ever intensifying brain fog, some trouble breathing, and fatigue to the point it's almost physically painful to stay awake and alert. Apparently the solution is just to exercise. That will miraculously make it all better. Can't say this without risking someone hospitalizing me again, but I'd love to ask if exercise would also help a bullet to the brain. I'm not seriously suicidal, but I just can't imagine life like this. And maybe that's ableist. Lots of people live with a lot worse than what I have, but I hardly feel like myself anymore. I was such a good student and a hard worker. I wrote operating systems for fun and made good progress against hacking capture the flags. Had aspirations of becoming a hacktivist. (which for legal reasons is a joke, and for serious reasons will probably never happen anyway) Now I can hardly write a simple program, I can't maintain school (I start out strong, but then I lose all ability to continue) I don't know how long I'll be able to effectively work, even playing some of my favorite video games tries my focus and thinking abilities. I feel like I should be eighty in a nursing home, not a 25-year-old failkid.
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DisabledAceSocialist [comrade/them] - 10mon
I don't think it's ableist. Everyone has their own breaking point. People are entitled to set their own standards for what an acceptable quality of life is to them. When you're ill or disabled you often get a lot of "some people are worse off than you so stop whingeing" attitude thrown at you, and I think it's unfair and ridiculous. There will always be someone worse off, I don't see why that means we shouldn't feel our lives are intolerable, or be devastated that we aren't capable of the things we used to do. We should be allowed to feel and express what we're feeling, instead of being pressured to wear a smile and be cheerful like our lives are some cheesy hallmark film where despite their life being in ruins, the main character is so happy to be alive and grateful for each day.
This is why the film "Me Before You" resonates so much with me.
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CupcakeOfSpice [she/her, fae/faer] - 10mon
Thank you. That means a lot. Sometimes everything just sucks and there's not much to be done about it. You are very kind and understanding, and I appreciate you.
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DisabledAceSocialist [comrade/them] - 10mon
You're welcome. Have you had your thyroid checked, ever?
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CupcakeOfSpice [she/her, fae/faer] - 10mon
I have not. Never saw a reason to, but I do know from friends it can affect all sorts of weird things.
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DisabledAceSocialist [comrade/them] - 10mon
Brain fog, trouble breathing and fatigue can all be caused by thyroid issues.
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CupcakeOfSpice [she/her, fae/faer] - 10mon
Hmm! I might have to look into that, then.
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DisabledAceSocialist [comrade/them] - 10mon
I am so exhausted by how difficult it is to get medical treatment in the UK when needed. At the moment I'm having my surgical dressings changed by the practice nurse twice a week. She cleans the wounds, puts an iodine patch on to help clear the infection, and redresses them. While the treatment is free on the NHS, the dressings aren't, I have to pay for those. So much for the NHS being "free at the point of delivery." I had to buy a box to take home too, for when the wounds are no longer so bad and I start to change them myself at home.
My next appointment for a dressing change is on Thursday but today one of the dressings came off. The wound it was covering is deep, oozing blood and orange/yellow fluid, and was totally exposed. I called the GP surgery and explained the situation and asked for a sooner appointment to get it changed. They said there are no appointments and the nurse is too busy to see me, I'll have to phone in the morning and see if I can get one. Appointments are released at 8.30am, but they all get snapped up at once. So many people need an appointment that at 8.30 everyone starts phoning or turning up in person and always, by the time I get through, they're all gone. The only reason I have the twice weekly appointments I do is because they're post-surgical appointments that were booked in advance. So I'll try but I know there's a 0.0001% chance of me being able to get an appointment sooner than Thursday.
So, I dressed the wound myself with one from the pack I had to buy. I don't have iodine patches to put on it, and I can't do it in a 100% sterile way like the nurse can. The surgical wounds already got so infected that about 9 days ago I ended up having to go to the emergency department (because, again, only way to get seen as the GP practice said they had no appointments and wouldn't squeeze me in.) I'm worried it'll get infected again now, and the dressing I've done isn't very comfortable, I'm worried it might be too tight but I had to wrap micropore around it to hold it in place.
It makes me so angry when I see British people bragging to Americans and other nationalities about the NHS. It's shit. Almost impossible to get an appointment and having to pay for your own damn bandages. And all the cost-saving measures they make only end up costing more in the long run.
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RaisedFistJoker [she/her] - 10mon
you can get iodine patches on amazon, it might be worth trying to buy them since they are the sterlising force at play
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DisabledAceSocialist [comrade/them] - 10mon
Due to my benefit appeal I don't have any money at all, and I don't want to keep asking for everything I need on mutual aid as I'm worried they'll get sick of me and I'll get less response next time I need food.
EDIT: Actually, I'm getting pretty desperate, I couldn't get an appointment today and it's starting to hurt again, I'm worried it's getting infected again. I'll try making a mutual aid post after all.
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hexbee [she/her] - 10mon
I'm glad you made a post in the end! Please don't be embarrassed to post a lot; if you need it, you need it
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DisabledAceSocialist [comrade/them] - 10mon
Thank you.
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Beetle [hy/hym] - 10mon
At that point where I’m just stressed & anxious enough that I can’t sleep. If this continues for much longer I’ll probably crash and be sick for weeks but I don’t know how to stop it.
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Ivysaur - 10mon
ok y'all i GOT to post this here. found this in the modlog recently just browsing:
????? how are eugenicist policies' relation to fascism "too subjective" lol
strange post from 7 months ago to remove 2 hours ago. not suspicious at all
::: spoiler (content in case the post is not visible, cw forced sterilization)
Title: TIL 25000 disabled people were sterilized in Japan between the 1950s and 1990s, at least 16,500 forcibly
Body: Japan had an Eugenic Protection Law (EPL) from 1948 to 1996. People with intellectual or mental disabilities, and those with certain hereditary diseases, were sterilised "to prevent birth of inferior descendants from the eugenic point of view, and to protect life and health of mother, as well".
Of the roughly 25,000 people sterilised under EPL, about 16,500 were made to against their will, and some without their knowledge.
A 1,400-page report submitted to parliament last year, and the first official account of the policy, found up to 8,000 patients who gave their consent were pressured into doing so.
Today the Japanese supreme court ruled that Eugenics laws were unconstitutional and ordered Japanese government to pay compensation to 11 people.
The Japanese Society of Psychiatry and Neurology (JSPN) in February apologised for the "irreparable harm" it was complicit in causing to the victims of eugenic policies.
"The JSPN, as an academic society responsible for psychiatric care, offers a sincere and unreserved apology to the victims of forced sterilisation for the harm inflicted upon their lives and for the disregard of their human rights," president Masaru Mimura said.
:::
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Kuori [she/her] - 10mon
i saw that too but i hadn't noticed how old the post was. that's so fucking suspect jesus christ
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Belly_Beanis [he/him] - 10mon
It looks like the mod of that sub posted the same topic, so did an admin delete it?
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Ivysaur - 10mon
The worst part of this technology is anonymizing administrative actions. I understand why it’s done that way but holy lord that is so ripe for abuse. Tell me who deleted the thread!!
I didn’t even see that someone had reposted it elsewhere. Seems like a bit of overkill if it was truly about semantics, but man I’ve seen how people talk about ableism over there (superficially, with no substance) and calling eugenics a debatable part of fascism is just blatantly incorrect.
In this case, there is only one mod, so it isnt hard to tell. But yea, I wish it would tell.
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DisabledAceSocialist [comrade/them] - 10mon
Does anyone else get rude comments from people in the street about your disability or things relating to it? I've had multiple rude comments about the way I walk now. One time I had a group of people drive past in a car and one stuck her head out of the window and yelled at me "Hop, two, three, four!" Then they all started laughing. I assume it was a reference to the fact that my walk is quite stiff as I try to compensate for a limp, and looks a bit like an army march. I had one man look at me then say to his girlfriend - quietly but still clearly intending that I should hear, "God, I hate people who limp. I get so angry when I see them. I just want to yell, Pick up your leg properly and stop dragging it, you look like a fucking idiot."
Today I had a medical appointment, and I had to go wearing blue plastic shoe-cover bags on my feet instead of shoes, due to the fact I had foot surgery recently. A 50/60ish year old couple were getting out of their car, saw my feet and started laughing and saying to each other, "Will you look at that? Imagine going out looking that ridiculous," and similar comments. Can't remember everything they said now.
I've had people who haven't seen me in a while, see me and comment on how rough/ill/swollen/puffy/etc I look now. Just, why? Why do people feel the need to say anything? I'm not harming or bothering them in any way. It would cost them nothing to keep their comments to themselves.
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hexbee [she/her] - 10mon
I'm not visibly disabled (at least until I started limping recently due to my knees I guess), but I get lots of similarly smarmy and condescending comments from strangers for being visibly trans.
The way I try to cope with it is by wearing noise cancelling earphones wherever I go and not making eye contact with anyone. It does work a lot of the time, but sometimes I still see people looking at me and... reacting, shall we say (pointing and laughing for example). Also my earphones aren't good enough to block things out if somebody starts shouting at me, so it's not like I don't still get reminders about what people actually think of me, but it works some me the time, which is better than nothing.
Overall though, I still really struggle to brush these things off like some trans people seem to be able to do. Maybe it digs extra deep due to all the autism related social trauma, but it's to the point that I find leaving my home for any reason really difficult due to this and often have panic attacks when I'm getting ready to go out.
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DisabledAceSocialist [comrade/them] - 10mon
I'm sorry you experience this too. I think if someone isn't happy with their own existence and is nasty/lacking empathy, they pick on people the see as different/easy targets. We need to constantly remind ourselves that they are the ones with the problem, not us.
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gingerbrat [she/her] - 10mon
No, it would not cost them anything.
One reason I can imagine is that humans in general have their attention drawn by objects and people out of the ordinary. That alone is annoying and degrading enough, but depending on social circumstances and upbringing, people have been taught to regard a limp in particular as a sign of poor manners and poverty, or generally of poor self-care.
The big issue here is not that you're limping for very painful reasons. The issue is that they feel free to other you and presume whatever they want about you out loud. The brazeness only comes from years of never being taught better or shut down.
It's not your fault and you're not weird. I know it's hard, comrade, and I'm sorry you have to go through it.
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DisabledAceSocialist [comrade/them] - 10mon
Thank you for the kind words. I didn't know people thought having a limp is poor manners. I already have a difficult enough time going out at all, partially due to how painful it can be to walk now, and partially due to the fact that I can't wear shoes currently. But the comments that people make, make it even harder to go out due to self-consciousness. I wish people would just ignore what I'm doing or wearing.
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gingerbrat [she/her] - 10mon
I agree, and I wish I could just make them look away for you or do the opposite of being heartless. I hope that at least the infection on your feet will heal sooner rather than later. If you need more patches or bandages, just let me know.
The bad manners stuff is not something I hear or experience often, but I remember getting scolded as a kid for limping (I only have theories as to why I did it, I think mostly bc it pissed the adults off). Most of the time it was ableist comments, and that you don't want to look like you're disabled. It's toxic, and untrue.
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DisabledAceSocialist [comrade/them] - 10mon
Thanks so much. I hate the way humans are, where everyone has to conform to some kind of standard. Don't show any sign of disability, don't show any sign of poverty, don't show any sign of having a different-than-standard identity in any way, whether that's sexuality, gender identity, belonging to a subculture or anything. Wear a suit, have a normal job, get married and have 2.4 children. Do anything different from this and you're ripe for abuse. Now I'm thinking about it I remember times I've had this shit for non-disability related things too. One time I got battered around the head with a lead pipe by a gang of boys for wearing a Guns N' roses t-shirt - they said I was a "goth". Another time an old man I know loudly shamed me for being asexual in a cafe full of people, announcing to the room that I must be a lesbian since i don't have a partner and going on and on about it until everyone in the room started looking at me and laughing. Not that there's anything wrong with being gay, I just hate public attention, and it clearly was being done in a malicious way. And let's not even get started on the attitude towards people who don't have children "You must be lonely/selfish/jealous/damaged in some way. When are you going to have kids? You're leaving it late, better hurry! Who will look after you when you're old? You're unnatural and will die alone!" Yes someone actually said that last one to me.
I want to start a movement of people minding their own damn business and not commenting on what other people are doing.
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gingerbrat [she/her] - 10mon
First things first, goth or not, Guns'N'Roses rock and I think it's cool you have/had a shirt of theirs.
Second, getting shamed for your sexuality and/or gender (no matter which) is just absolutely outdated, untrue, and such a fucked up thing to do. People who do this type of shit don't deserve respect and that the entire group of people started laughing at you is outrageous. Even if you did anything to draw attention to yourself consciously, this is not acceptable behavior by anyone. And as you said, you hate public attention, so this is also something other people should respect.
And the kids thing, urgh, will this ever stop? I hear it all the time too, and it doesn't seem to get any less. Except now it's not older people asking but people my age and sometimes even younger. What a toxic brain worm this "You're unnatural and will die alone" type of thinking is. It's not okay, ever, to be treated that way or treat anyone that way. What the actual fuck.
I'm up for co-founding that movement with you. But mostly, I just want you to know you're not alone and appreciated the way you are
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DisabledAceSocialist [comrade/them] - 10mon
Thank you. This site is the only place I feel understood and not alone. Yeah the one who said "You're unnatural and will die alone," was a male acquaintance who I had politely rejected after he told me: he wanted to marry me and for me to provide him with at least three kids, he'd already told his mum I am her future daughter in law and she couldn't wait to meet me, and if I get fat after having our kids he will cheat on me. According to him I also wouldn't be allowed to work or study (this is before I became disabled) and would have to devote my entire existence to being a wife and mother. I had done nothing to make him think I was interested. I just politely responded that I wasn't interested in marriage or kids with anyone, then came his comment. Literally all the dealings I'd had with him prior to this was that he saw me wearing a Def Leppard shirt, struck up conversation as they're his favourite band, and we'd then chatted about random stuff a few times.
The old man who shamed me for not being partnered up, he's a horrible old bully. His favourite thing is to make fun of overweight women, he literally goes up to random strangers and tells them they're fat. I know these people are the ones with the problem, not me, but it's still hard not to feel embarrassed.
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Belly_Beanis [he/him] - 10mon
Oh cool the pharmacy will only let me refill vicodin when I take the last dose, but my doctor's office won't refill opioids on weekends or after hours in accordance with state law. Furthermore, urgent care won't give out temporary scripts, either. I could go to the emergency room and beg for a shot of morphine, but they don't like to do that unless I'm having spasms.
So guess who gets to lay in bed all weekend going through minor opioid withdrawal while their back and legs are chronically aching? 😀
Good thing we stopped those addicts from having bodily autonomy or else we might have actually provided the disabled with some convenience!
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gingerbrat [she/her] - 10mon
@khizuo@hexbear.net good to hear the cane makes life a bit better for you! And I can only try to imagine the process for an electric wheelchair, it must be daunting. I'm happy for you!
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Hohsia [any] - 10mon
I hate brains
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DisabledAceSocialist [comrade/them] - 10mon
I just went and got the dressings from my foot surgery changed by the nurse. It was a nurse I'd never seen before and once she'd removed the old dressings she started picking my surgical scabs off! What the fuck. I had to ask her to stop doing that and she said "Oh sorry, I don't have much experience with feet."
Every experience I have with the medical profession confirms to me that the whole thing is a crock of shit.
8
Kuori [she/her] - 10mon
jesus what the fuck. you could train a dog to provide better medical care than that! who the fuck makes it through med school without learning not to pick at scabs like a 5 year old??
Ughhh I'm sorry you had to deal with yet more bullshit. I really hope you catch a break soon.
7
DisabledAceSocialist [comrade/them] - 10mon
Thank you. Now I'm worrying it'll cause further infection.
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gingerbrat [she/her] - 10mon
I'm having a rage fit over here on your behalf, what the fuck??? I really hope it doesn't get infected further
4
DisabledAceSocialist [comrade/them] - 10mon
Thank you. It had finally stopped hurting too, after that it's started hurting again. I think I will just change my own bandages in future.
4
Tripbin [none/use name] - 10mon
CW: depression, S ideation
Hey, I don't know if this is the right place to post this so I apologize but I really need some people to talk to right now regarding how hopeless my depression has gotten due to a mix of both the mental illness aspects and also various physical ailments like degenerative disk disease, dental health, etc.
I'm having a lot of trouble trying to imagine a future where i can solve these issues to a point where I don't have pure anhedonia and pain every single day (for 13 years now)
Another huge block to getting further help is this all came about after a doc prescribed me paxil for an off label reason (IBS) in early 2010s. Led to a huge depersonalization episode that honestly never really ended and I now have PTSD or cptsd from the event.
It has caused a now paralyzing fear of even trying any kind of medication I haven't had before (despite me knowing that's what I need) because if anything even close to that happened again I'm done.
On top of all that doctor/dental visits are a nightmare I avoid to the point of it harming my health due to also having a severe vasovagal syncope reaction that no matter how severe I tell the doctors it is they still end up with looks of horror when my BP drops and I pass out. Then they charge me $500 to get an EKG to make sure it's fine despite knowing I'm going to pass out every single time.
Idk what I'm asking or how anyone could help but if anyone with huge medical anxieties, or servere reactions to antidepressant medications that gave them crippling fear and you found a way to overcome it, id love to hear any kind of advice or help.
I've tried therapy a couple times but usually end up feeling ignored and dismissed and the complete lack of energy to even get up, let alone drive half an hour to a psych, usually ends with me cold stopping after 4-6 months. And so far none of the grounding, CBT, eye movement stuff has had any impact on helping me get over the block of taking medications which then futhers my hopelessness.
Also I should mention due to the severity of the depersonalization I tried getting help with short term benzos at the time but no doctor was willing to help so it led me to the RC scene and ive been chemically addicted to RC benzos for 8-9 years now. Haven't used them in a dose to get high or blackout or anything in like 8 years but the daily dose to take just enough anxiety off to make it through a day has created a long-term addiction that no doubt messes with my attempts at therapy since it's hard to assess your feelings when they're dulled by benzos.
Also if anyone knows of good resources or places to talk/learn about any of this that'd be cool too. Or if I should make this a post instead of a comment etc.
I prefer not to deal with the suicide helpline due to my (knowingly) irrational fear of someone making the call to get me committed and because I'd prefer to talk this out with others who have suffered from similar situations and are also able to understand the added problems of how the political landscape adds to it so I guess that's why I choose here of all places to finally ask for help.
And decided to try it. I started making myself eat multiple portions of raw fruit and veg a day, especially the ones they say are the best for anxiety, bananas, apples and carrots. Within weeks, my anxiety levels had dropped significantly and I felt noticeably less depressed. Personally, I had to stop eating like this when I developed a lot of food intolerances (including to fruit) and eventually the depression and anxiety got bad again. But if you can eat these things, give it a try. I also read a study about how eating just two portions of processed food a week raises your risk of depression and anxiety by 50%, so cut out processed food if possible.
As far as medical anxieties go, on several occasions when I've needed medical treatments that freak me out (in my case, especially having an MRI as I'm extremely claustrophobic) I've persuaded the doctors to do it under a general anaesthetic. Perhaps they might do this for you for medical procedures you find unbearable.
When it comes to charging you for pointless EKGs, maybe have it put in your notes or get a living will/write to the hospital to inform them you don't consent to these EKGs?
I did try hypnotherapy to get over a fear but it didn't work at all, so I can't recommend that.
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hexbee [she/her] - 10mon
if anyone with huge medical anxieties, or servere reactions to antidepressant medications that gave them crippling fear and you found a way to overcome it, id love to hear any kind of advice or help.
I do have huge medical anxieties, largely due to how trans people are treated by the segregated healthcare system in the ukkk, but I haven't exactly found a way to overcome it. I'm also dealing with addiction to a substance that at least temporarily numbs the overwhelming panic, but it's not a great solution, and a lot of my efforts are spent on trying to come off it in a way that's sustainable. In lieu of going cold turkey, which triggers autistic meltdowns and makes me dangerously suicidal, I'm methodically lowering my intake over a longer period of time (as in months) and trying to deal with whatever anguish comes up one bit at a time. I guess the hope is to get to a place where I'm not completely dissociating all the time and find more healthy ways to cope with/channel the despair, but I don't think that's even a guarantee and it's hard to imagine that I'll be able to overcome any institutional barriers through any newfound sheer force of will. But either way, it feels like one of the only things I'm able to do to help myself in some way, so I'll keep at it.
I'm sorry if this rant wasn't very helpful, or if you expected something else, but it seems the most I can offer is to commiserate about how shit it all is. Standalone posts do tend to get more attention than comments in this mega, so I would encourage you to make one if you're looking for more responses. Hang in there pal (っ˘̩╭╮˘̩)っ
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hexbee [she/her] - 10mon
Getting random pains in my abdomen all day today; everything is fine╭( ๐_๐)╮Hopefully I just slept wrong or something
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DragonBallZinn [he/him, they/them] - 10mon
Here's an interesting proposal. I think I might need some reparenting.
While I'm on good terms with my parents, I find that as an autistic person there are ways that my needs have not been met. I don't necessarily blame them, as I wonder if my condition just makes me a difficult to parent person. However, I still need to teach myself some for basic skills I should have picked up as a child and I find that some of my worst traits can sometimes be enabled by them. One of my big motivations to actually getting a job and getting out there is to make friends who will encourage my better traits and hold me to greater accountability.
khizuo in disabled
Disabled Community Megathread 2/3/25 — 2/9/25
I finally got a cane! It’s not really the mobility aid I would benefit from the most (that’s an electric wheelchair but I’m so intimidated by the process to get one of those sob) but it’s a first step and I’m still excited. How is everyone else doing?
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:
Mask up, love one another, and stay alive for one more week.
it's wednesday somewhere
Speaking on lemmy about how I had to pay for my own medical supplies because the NHS wouldn't pay for them, I had an American poster, who'd recently had to pay out of pocket for some health expenses, tell me "Well if you were in america you'd have to pay for everything yourself," and I'm paraphrasing but basically it seemed like he thought I should be grateful I get anything on the NHS. His attitude seemed like I should stop complaining that I have to beg on here for medical supplies, stop complaining that i ended up in hospital because i couldn't get a doctors appointment when I needed one. Stop complaining because americans have it worse. I don't understand why someone with an attitude like this is even on a socialist/communist forum. I don't think we should be grateful for getting less than we need from our governments, for struggling so hard to get the basic essentials. We should all be outraged on behalf of each other that we have to struggle like this, not whingeing "Well i have it worse!"
Same vibe as "well if I had to pay back my loans, then nobody deserves loan forgiveness"
That's not even true in every state lmao. Medicaid, while being generally garbage, will still cover a lot of stuff like bandages, emergency room visits, etc. so long as you have total disability. They won't cover some types of medication deemed "unnecessary" (whatever the fuck that means) or specific supplies like lubricant for catheters. But it's not literally everything coming out of your pocket.
I had to wait more than a few months to get my tooth fixed and I'm maxed out again for the year so if I have anymore damage to my teeth I'll have to wait until 2026 or pay for it out of pocket. That's still better than not having bandages for a potential infection which could actually kill a person.
Had a conversation with my mom where I expressed concerns such as my muscles clenching all the time, an ever intensifying brain fog, some trouble breathing, and fatigue to the point it's almost physically painful to stay awake and alert. Apparently the solution is just to exercise. That will miraculously make it all better. Can't say this without risking someone hospitalizing me again, but I'd love to ask if exercise would also help a bullet to the brain. I'm not seriously suicidal, but I just can't imagine life like this. And maybe that's ableist. Lots of people live with a lot worse than what I have, but I hardly feel like myself anymore. I was such a good student and a hard worker. I wrote operating systems for fun and made good progress against hacking capture the flags. Had aspirations of becoming a hacktivist. (which for legal reasons is a joke, and for serious reasons will probably never happen anyway) Now I can hardly write a simple program, I can't maintain school (I start out strong, but then I lose all ability to continue) I don't know how long I'll be able to effectively work, even playing some of my favorite video games tries my focus and thinking abilities. I feel like I should be eighty in a nursing home, not a 25-year-old failkid.
I don't think it's ableist. Everyone has their own breaking point. People are entitled to set their own standards for what an acceptable quality of life is to them. When you're ill or disabled you often get a lot of "some people are worse off than you so stop whingeing" attitude thrown at you, and I think it's unfair and ridiculous. There will always be someone worse off, I don't see why that means we shouldn't feel our lives are intolerable, or be devastated that we aren't capable of the things we used to do. We should be allowed to feel and express what we're feeling, instead of being pressured to wear a smile and be cheerful like our lives are some cheesy hallmark film where despite their life being in ruins, the main character is so happy to be alive and grateful for each day.
This is why the film "Me Before You" resonates so much with me.
Thank you. That means a lot. Sometimes everything just sucks and there's not much to be done about it. You are very kind and understanding, and I appreciate you.
You're welcome. Have you had your thyroid checked, ever?
I have not. Never saw a reason to, but I do know from friends it can affect all sorts of weird things.
Brain fog, trouble breathing and fatigue can all be caused by thyroid issues.
Hmm! I might have to look into that, then.
I am so exhausted by how difficult it is to get medical treatment in the UK when needed. At the moment I'm having my surgical dressings changed by the practice nurse twice a week. She cleans the wounds, puts an iodine patch on to help clear the infection, and redresses them. While the treatment is free on the NHS, the dressings aren't, I have to pay for those. So much for the NHS being "free at the point of delivery." I had to buy a box to take home too, for when the wounds are no longer so bad and I start to change them myself at home.
My next appointment for a dressing change is on Thursday but today one of the dressings came off. The wound it was covering is deep, oozing blood and orange/yellow fluid, and was totally exposed. I called the GP surgery and explained the situation and asked for a sooner appointment to get it changed. They said there are no appointments and the nurse is too busy to see me, I'll have to phone in the morning and see if I can get one. Appointments are released at 8.30am, but they all get snapped up at once. So many people need an appointment that at 8.30 everyone starts phoning or turning up in person and always, by the time I get through, they're all gone. The only reason I have the twice weekly appointments I do is because they're post-surgical appointments that were booked in advance. So I'll try but I know there's a 0.0001% chance of me being able to get an appointment sooner than Thursday.
So, I dressed the wound myself with one from the pack I had to buy. I don't have iodine patches to put on it, and I can't do it in a 100% sterile way like the nurse can. The surgical wounds already got so infected that about 9 days ago I ended up having to go to the emergency department (because, again, only way to get seen as the GP practice said they had no appointments and wouldn't squeeze me in.) I'm worried it'll get infected again now, and the dressing I've done isn't very comfortable, I'm worried it might be too tight but I had to wrap micropore around it to hold it in place.
It makes me so angry when I see British people bragging to Americans and other nationalities about the NHS. It's shit. Almost impossible to get an appointment and having to pay for your own damn bandages. And all the cost-saving measures they make only end up costing more in the long run.
you can get iodine patches on amazon, it might be worth trying to buy them since they are the sterlising force at play
Due to my benefit appeal I don't have any money at all, and I don't want to keep asking for everything I need on mutual aid as I'm worried they'll get sick of me and I'll get less response next time I need food.
EDIT: Actually, I'm getting pretty desperate, I couldn't get an appointment today and it's starting to hurt again, I'm worried it's getting infected again. I'll try making a mutual aid post after all.
I'm glad you made a post in the end! Please don't be embarrassed to post a lot; if you need it, you need it
Thank you.
At that point where I’m just stressed & anxious enough that I can’t sleep. If this continues for much longer I’ll probably crash and be sick for weeks but I don’t know how to stop it.
ok y'all i GOT to post this here. found this in the modlog recently just browsing:
https://hexbear.net/post/2905623
????? how are eugenicist policies' relation to fascism "too subjective" lol
strange post from 7 months ago to remove 2 hours ago. not suspicious at all
::: spoiler (content in case the post is not visible, cw forced sterilization) Title: TIL 25000 disabled people were sterilized in Japan between the 1950s and 1990s, at least 16,500 forcibly
Link
Body: Japan had an Eugenic Protection Law (EPL) from 1948 to 1996. People with intellectual or mental disabilities, and those with certain hereditary diseases, were sterilised "to prevent birth of inferior descendants from the eugenic point of view, and to protect life and health of mother, as well".
Of the roughly 25,000 people sterilised under EPL, about 16,500 were made to against their will, and some without their knowledge.
A 1,400-page report submitted to parliament last year, and the first official account of the policy, found up to 8,000 patients who gave their consent were pressured into doing so.
Today the Japanese supreme court ruled that Eugenics laws were unconstitutional and ordered Japanese government to pay compensation to 11 people.
The Japanese Society of Psychiatry and Neurology (JSPN) in February apologised for the "irreparable harm" it was complicit in causing to the victims of eugenic policies.
"The JSPN, as an academic society responsible for psychiatric care, offers a sincere and unreserved apology to the victims of forced sterilisation for the harm inflicted upon their lives and for the disregard of their human rights," president Masaru Mimura said. :::
i saw that too but i hadn't noticed how old the post was. that's so fucking suspect jesus christ
It looks like the mod of that sub posted the same topic, so did an admin delete it?
The worst part of this technology is anonymizing administrative actions. I understand why it’s done that way but holy lord that is so ripe for abuse. Tell me who deleted the thread!!
I didn’t even see that someone had reposted it elsewhere. Seems like a bit of overkill if it was truly about semantics, but man I’ve seen how people talk about ableism over there (superficially, with no substance) and calling eugenics a debatable part of fascism is just blatantly incorrect.
In this case, there is only one mod, so it isnt hard to tell. But yea, I wish it would tell.
Does anyone else get rude comments from people in the street about your disability or things relating to it? I've had multiple rude comments about the way I walk now. One time I had a group of people drive past in a car and one stuck her head out of the window and yelled at me "Hop, two, three, four!" Then they all started laughing. I assume it was a reference to the fact that my walk is quite stiff as I try to compensate for a limp, and looks a bit like an army march. I had one man look at me then say to his girlfriend - quietly but still clearly intending that I should hear, "God, I hate people who limp. I get so angry when I see them. I just want to yell, Pick up your leg properly and stop dragging it, you look like a fucking idiot."
Today I had a medical appointment, and I had to go wearing blue plastic shoe-cover bags on my feet instead of shoes, due to the fact I had foot surgery recently. A 50/60ish year old couple were getting out of their car, saw my feet and started laughing and saying to each other, "Will you look at that? Imagine going out looking that ridiculous," and similar comments. Can't remember everything they said now.
I've had people who haven't seen me in a while, see me and comment on how rough/ill/swollen/puffy/etc I look now. Just, why? Why do people feel the need to say anything? I'm not harming or bothering them in any way. It would cost them nothing to keep their comments to themselves.
I'm not visibly disabled (at least until I started limping recently due to my knees I guess), but I get lots of similarly smarmy and condescending comments from strangers for being visibly trans.
The way I try to cope with it is by wearing noise cancelling earphones wherever I go and not making eye contact with anyone. It does work a lot of the time, but sometimes I still see people looking at me and... reacting, shall we say (pointing and laughing for example). Also my earphones aren't good enough to block things out if somebody starts shouting at me, so it's not like I don't still get reminders about what people actually think of me, but it works some me the time, which is better than nothing.
Overall though, I still really struggle to brush these things off like some trans people seem to be able to do. Maybe it digs extra deep due to all the autism related social trauma, but it's to the point that I find leaving my home for any reason really difficult due to this and often have panic attacks when I'm getting ready to go out.
I'm sorry you experience this too. I think if someone isn't happy with their own existence and is nasty/lacking empathy, they pick on people the see as different/easy targets. We need to constantly remind ourselves that they are the ones with the problem, not us.
No, it would not cost them anything.
One reason I can imagine is that humans in general have their attention drawn by objects and people out of the ordinary. That alone is annoying and degrading enough, but depending on social circumstances and upbringing, people have been taught to regard a limp in particular as a sign of poor manners and poverty, or generally of poor self-care.
The big issue here is not that you're limping for very painful reasons. The issue is that they feel free to other you and presume whatever they want about you out loud. The brazeness only comes from years of never being taught better or shut down.
It's not your fault and you're not weird. I know it's hard, comrade, and I'm sorry you have to go through it.
Thank you for the kind words. I didn't know people thought having a limp is poor manners. I already have a difficult enough time going out at all, partially due to how painful it can be to walk now, and partially due to the fact that I can't wear shoes currently. But the comments that people make, make it even harder to go out due to self-consciousness. I wish people would just ignore what I'm doing or wearing.
I agree, and I wish I could just make them look away for you or do the opposite of being heartless. I hope that at least the infection on your feet will heal sooner rather than later. If you need more patches or bandages, just let me know.
The bad manners stuff is not something I hear or experience often, but I remember getting scolded as a kid for limping (I only have theories as to why I did it, I think mostly bc it pissed the adults off). Most of the time it was ableist comments, and that you don't want to look like you're disabled. It's toxic, and untrue.
Thanks so much. I hate the way humans are, where everyone has to conform to some kind of standard. Don't show any sign of disability, don't show any sign of poverty, don't show any sign of having a different-than-standard identity in any way, whether that's sexuality, gender identity, belonging to a subculture or anything. Wear a suit, have a normal job, get married and have 2.4 children. Do anything different from this and you're ripe for abuse. Now I'm thinking about it I remember times I've had this shit for non-disability related things too. One time I got battered around the head with a lead pipe by a gang of boys for wearing a Guns N' roses t-shirt - they said I was a "goth". Another time an old man I know loudly shamed me for being asexual in a cafe full of people, announcing to the room that I must be a lesbian since i don't have a partner and going on and on about it until everyone in the room started looking at me and laughing. Not that there's anything wrong with being gay, I just hate public attention, and it clearly was being done in a malicious way. And let's not even get started on the attitude towards people who don't have children "You must be lonely/selfish/jealous/damaged in some way. When are you going to have kids? You're leaving it late, better hurry! Who will look after you when you're old? You're unnatural and will die alone!" Yes someone actually said that last one to me.
I want to start a movement of people minding their own damn business and not commenting on what other people are doing.
First things first, goth or not, Guns'N'Roses rock and I think it's cool you have/had a shirt of theirs. Second, getting shamed for your sexuality and/or gender (no matter which) is just absolutely outdated, untrue, and such a fucked up thing to do. People who do this type of shit don't deserve respect and that the entire group of people started laughing at you is outrageous. Even if you did anything to draw attention to yourself consciously, this is not acceptable behavior by anyone. And as you said, you hate public attention, so this is also something other people should respect.
And the kids thing, urgh, will this ever stop? I hear it all the time too, and it doesn't seem to get any less. Except now it's not older people asking but people my age and sometimes even younger. What a toxic brain worm this "You're unnatural and will die alone" type of thinking is. It's not okay, ever, to be treated that way or treat anyone that way. What the actual fuck.
I'm up for co-founding that movement with you. But mostly, I just want you to know you're not alone and appreciated the way you are
Thank you. This site is the only place I feel understood and not alone. Yeah the one who said "You're unnatural and will die alone," was a male acquaintance who I had politely rejected after he told me: he wanted to marry me and for me to provide him with at least three kids, he'd already told his mum I am her future daughter in law and she couldn't wait to meet me, and if I get fat after having our kids he will cheat on me. According to him I also wouldn't be allowed to work or study (this is before I became disabled) and would have to devote my entire existence to being a wife and mother. I had done nothing to make him think I was interested. I just politely responded that I wasn't interested in marriage or kids with anyone, then came his comment. Literally all the dealings I'd had with him prior to this was that he saw me wearing a Def Leppard shirt, struck up conversation as they're his favourite band, and we'd then chatted about random stuff a few times.
The old man who shamed me for not being partnered up, he's a horrible old bully. His favourite thing is to make fun of overweight women, he literally goes up to random strangers and tells them they're fat. I know these people are the ones with the problem, not me, but it's still hard not to feel embarrassed.
Oh cool the pharmacy will only let me refill vicodin when I take the last dose, but my doctor's office won't refill opioids on weekends or after hours in accordance with state law. Furthermore, urgent care won't give out temporary scripts, either. I could go to the emergency room and beg for a shot of morphine, but they don't like to do that unless I'm having spasms.
So guess who gets to lay in bed all weekend going through minor opioid withdrawal while their back and legs are chronically aching? 😀
Good thing we stopped those addicts from having bodily autonomy or else we might have actually provided the disabled with some convenience!
@khizuo@hexbear.net good to hear the cane makes life a bit better for you! And I can only try to imagine the process for an electric wheelchair, it must be daunting. I'm happy for you!
I hate brains
I just went and got the dressings from my foot surgery changed by the nurse. It was a nurse I'd never seen before and once she'd removed the old dressings she started picking my surgical scabs off! What the fuck. I had to ask her to stop doing that and she said "Oh sorry, I don't have much experience with feet."
Every experience I have with the medical profession confirms to me that the whole thing is a crock of shit.
jesus what the fuck. you could train a dog to provide better medical care than that! who the fuck makes it through med school without learning not to pick at scabs like a 5 year old??
Ughhh I'm sorry you had to deal with yet more bullshit. I really hope you catch a break soon.
Thank you. Now I'm worrying it'll cause further infection.
I'm having a rage fit over here on your behalf, what the fuck??? I really hope it doesn't get infected further
Thank you. It had finally stopped hurting too, after that it's started hurting again. I think I will just change my own bandages in future.
CW: depression, S ideation
Hey, I don't know if this is the right place to post this so I apologize but I really need some people to talk to right now regarding how hopeless my depression has gotten due to a mix of both the mental illness aspects and also various physical ailments like degenerative disk disease, dental health, etc.
I'm having a lot of trouble trying to imagine a future where i can solve these issues to a point where I don't have pure anhedonia and pain every single day (for 13 years now)
Another huge block to getting further help is this all came about after a doc prescribed me paxil for an off label reason (IBS) in early 2010s. Led to a huge depersonalization episode that honestly never really ended and I now have PTSD or cptsd from the event.
It has caused a now paralyzing fear of even trying any kind of medication I haven't had before (despite me knowing that's what I need) because if anything even close to that happened again I'm done.
On top of all that doctor/dental visits are a nightmare I avoid to the point of it harming my health due to also having a severe vasovagal syncope reaction that no matter how severe I tell the doctors it is they still end up with looks of horror when my BP drops and I pass out. Then they charge me $500 to get an EKG to make sure it's fine despite knowing I'm going to pass out every single time.
Idk what I'm asking or how anyone could help but if anyone with huge medical anxieties, or servere reactions to antidepressant medications that gave them crippling fear and you found a way to overcome it, id love to hear any kind of advice or help.
I've tried therapy a couple times but usually end up feeling ignored and dismissed and the complete lack of energy to even get up, let alone drive half an hour to a psych, usually ends with me cold stopping after 4-6 months. And so far none of the grounding, CBT, eye movement stuff has had any impact on helping me get over the block of taking medications which then futhers my hopelessness.
Also I should mention due to the severity of the depersonalization I tried getting help with short term benzos at the time but no doctor was willing to help so it led me to the RC scene and ive been chemically addicted to RC benzos for 8-9 years now. Haven't used them in a dose to get high or blackout or anything in like 8 years but the daily dose to take just enough anxiety off to make it through a day has created a long-term addiction that no doubt messes with my attempts at therapy since it's hard to assess your feelings when they're dulled by benzos.
Also if anyone knows of good resources or places to talk/learn about any of this that'd be cool too. Or if I should make this a post instead of a comment etc.
I prefer not to deal with the suicide helpline due to my (knowingly) irrational fear of someone making the call to get me committed and because I'd prefer to talk this out with others who have suffered from similar situations and are also able to understand the added problems of how the political landscape adds to it so I guess that's why I choose here of all places to finally ask for help.
I read this study some time ago:
https://www.frontiersin.org/journals/psychology/articles/10.3389/fpsyg.2018.00487/full
And decided to try it. I started making myself eat multiple portions of raw fruit and veg a day, especially the ones they say are the best for anxiety, bananas, apples and carrots. Within weeks, my anxiety levels had dropped significantly and I felt noticeably less depressed. Personally, I had to stop eating like this when I developed a lot of food intolerances (including to fruit) and eventually the depression and anxiety got bad again. But if you can eat these things, give it a try. I also read a study about how eating just two portions of processed food a week raises your risk of depression and anxiety by 50%, so cut out processed food if possible.
As far as medical anxieties go, on several occasions when I've needed medical treatments that freak me out (in my case, especially having an MRI as I'm extremely claustrophobic) I've persuaded the doctors to do it under a general anaesthetic. Perhaps they might do this for you for medical procedures you find unbearable.
When it comes to charging you for pointless EKGs, maybe have it put in your notes or get a living will/write to the hospital to inform them you don't consent to these EKGs?
I did try hypnotherapy to get over a fear but it didn't work at all, so I can't recommend that.
I do have huge medical anxieties, largely due to how trans people are treated by the segregated healthcare system in the ukkk, but I haven't exactly found a way to overcome it. I'm also dealing with addiction to a substance that at least temporarily numbs the overwhelming panic, but it's not a great solution, and a lot of my efforts are spent on trying to come off it in a way that's sustainable. In lieu of going cold turkey, which triggers autistic meltdowns and makes me dangerously suicidal, I'm methodically lowering my intake over a longer period of time (as in months) and trying to deal with whatever anguish comes up one bit at a time. I guess the hope is to get to a place where I'm not completely dissociating all the time and find more healthy ways to cope with/channel the despair, but I don't think that's even a guarantee and it's hard to imagine that I'll be able to overcome any institutional barriers through any newfound sheer force of will. But either way, it feels like one of the only things I'm able to do to help myself in some way, so I'll keep at it.
I'm sorry if this rant wasn't very helpful, or if you expected something else, but it seems the most I can offer is to commiserate about how shit it all is. Standalone posts do tend to get more attention than comments in this mega, so I would encourage you to make one if you're looking for more responses. Hang in there pal (っ˘̩╭╮˘̩)っ
Getting random pains in my abdomen all day today; everything is fine╭( ๐_๐)╮Hopefully I just slept wrong or something
Here's an interesting proposal. I think I might need some reparenting.
While I'm on good terms with my parents, I find that as an autistic person there are ways that my needs have not been met. I don't necessarily blame them, as I wonder if my condition just makes me a difficult to parent person. However, I still need to teach myself some for basic skills I should have picked up as a child and I find that some of my worst traits can sometimes be enabled by them. One of my big motivations to actually getting a job and getting out there is to make friends who will encourage my better traits and hold me to greater accountability.