Disabled Community Megathread from July 14, 2025 to July 27, 2025
In my dreams, you lay your sorrow on the table, and the air between us is soft and we have time.
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.
Moss [they/them] - 5mon
Everyone supports "mental health" until they actually get called on to do it. I lived with nominally supportive housemates in college who would say "mental health is important! Believe in yourself!" Then when I started falling apart in my final year they got grossed out. They didn't want anything to do with me. Why invite the depressed person to anything? They're just gonna end up miserable. Talking about depression is gross and yucky, eww, uncomfortable, go to therapy, that's your fault. So they just ended up excluding me from everything they did because it was easier for them.
::: spoiler cw suicide
It took a suicide attempt for them to even ask me if I was doing okay, after a year of my being vocally and visibly depressed.
:::
It sucks finding out that good people can be bad friends. Yes, it would have been uncomfortable and difficult for them to help me. It would have taken some work. But they turned out to be the kind of friends who only like you when you're fun and smiling.
Obviously my depression made things harder for them. It made things harder for everyone. That's why I needed their help, and they didn't give it to me
18
TheSpectreOfGay [hy/hym, she/her] - 5mon
for real. i guess it's the liberal thing about pretending to care about an issue so you look good? idk. also if you dont recover fast enough they get mad at you, lmao
11
gingerbrat [she/her] - 5mon
The bootstrap mentality is omnipresent. You're on the ground, managed once to ask for help, and if you don't get up immediately, they leave you there.
And even if they don't think you're supposed to pull yourself up, they have so much learned helplessness with regards to actually helping that they watch on without doing anything. It's frustrating to no end
7
DisabledAceSocialist [comrade/them] - 5mon
Yep. I had to quit working and drop out of my studies when I became too ill to continue and people were weirdly angry and judgmental about it. I got comments like "So when are you going back to school? Why don't you sign up to restart this coming term? When are you going back to work? You're not back working yet?" And I'm like "What? I'm having cancer treatment, I'm so unwell I keep falling asleep in the middle of the day, I can't concentrate, I have no energy and I'm having terrible side effects like heart issues and all kinds of other crap, I have non-stop medical appointments and fuckers are complaining that I'm not doing anything right now? As if fighting cancer is just not doing anything.
And the comments for being on benefits. Endless comments about how I'm getting "free money," and "You don't do anything to earn that, you don't deserve it. Lucky you, some of us have to work for our money."
6
TheSpectreOfGay [hy/hym, she/her] - 5mon
dealing with benefits shit has been way more work than my previous bullshit job lmao, ppl r so stupid and annoying
7
DisabledAceSocialist [comrade/them] - 5mon
Absolutely. Working a full time job was easier and less stressful than this.
6
DisabledAceSocialist [comrade/them] - 5mon
I really think that almost everyone is like this. It was the same for me when I got cancer. At first people were shocked and sympathetic but as time wore on and my condition worsened, everyone abandoned me.
7
DisabledAceSocialist [comrade/them] - 5mon
I actually hate being alive, being trapped in a physical body that's falling apart and literally rotten, painful, infested with infection, doesn't work, requires drugs to stay just barely alive, requires endless maintenance not to mention food, all of which takes time, effort and money. And for what? It's not like these issues are going to be solved, all that can be done is just try to keep on top of them as much as possible. You could probably be prosecuted for animal cruelty if you kept a pet alive in this condition, but a human must be forced to drag it out for as long as possible, for literally no reason whatsoever.
From the ages of about 18/19 to about 21/22 I went through a stage of sometimes having what I can only describe as intrusive visions, although they weren't unpleasant at all. I'd be doing something and suddenly I'd get an actual (maybe mental, I can't describe it exactly) vision of myself (from two perspectives at the same time, first person and third person) as a blonde Australian girl doing exactly the same thing in an alternate life. One time aged about 18 I was walking through a forest, I started jogging and suddenly my entire vision was taken over by this image of me as a blonde Australian girl running through a forest. It was accompanied by intense feelings that this was me in an alternate life. This other me was a total opposite version of myself, blonde where I'm dark, Australian where I'm British, and most of all she had the most positive, uplifted mood imaginable. (Even before my life became as bad as it is now I had depression and physical health issues and money and living situation problems so my mood wasn't brilliant). This Australian version of me was absolutely filled with hope and joy and love of life.
I had this experience several more times over the next few years. Aged around 20/21, I was with two friends, one was playing guitar and listening to it through headphones. He took the headphones off and gave them to another friend. As soon as this person put the headphones on I had another intense vision of us both as Australians, in a small private plane, about to take off. He was the pilot and was putting his pilot headphones on. Again I felt that sense of joy and love of life, we were clearly having great lives in this alternate reality.
It happened several other times, and after a few years it just stopped happening. I don't know whether it was a mental illness, a coping mechanism or what, I mean my life wasn't as bad then as it is now but it doesn't happen any more. It really felt like there was this parallel life out there somewhere, where I was the opposite of myself, living the opposite life where everything was brilliant. Sometimes I've wondered, if that version of me is actually real somewhere then maybe to balance the scales and pay for that great life I also have to live this life where everything is terrible and miserable and hopeless. Or maybe it's some cosmic learning experience, experiencing the best and the worst of life. Maybe it was just a coping mechanism to feel good for a few moments but then why don't I get it any more? I wish I could swap places and be that Australian.
13
Mexidude93 [he/him] - 5mon
Is anyone else annoyed by religious people, specifically christians, who assume you don’t believe because you resent that "God" put you in a wheelchair or gave you which ever disability you may have? No muthafucker I just don't accept you're inconsistent explanations for what happens to non-believers who never had a chance to "be saved"! I don't want to get all r/atheist on y'all so stop me if I do
12
TheSpectreOfGay [hy/hym, she/her] - 5mon
well to be honest, while i do not believe in god for a variety of reasons, i wouldn't worship a god who cursed random people to suffer regardless of if he was real. fuck that guy.
11
Mexidude93 [he/him] - 5mon
I said don't tempt me Sheitan lol. But seriously I'm not religious either but if I was I still would not believe that interpretation of disability and I blame protestants for perpetrating search wretched beliefs. Protestantism really fucked Westerners up!
8
BountifulEggnog [she/her] - 5mon
I'm pretty sure they do this kind of thing (along with because you want sin/you hate god/the church hurt you and I'm sure a million others) because they don't want to hear or think about your actual reasons. If you have an issue to point out with believing/worshiping they can't answer, they are happy to just glue another reason on you as being the real reason you don't believe. I've had many theists do this to me, its very lazy and transparent for anyone not already invested in their position. A deflection for the in group. Oh pay no attention to them, they're just mad at god! Why would we listen to someone who's mad at god?
6
Keld [he/him, any] - 5mon
The pharmacist heard my accent and switched to English.
I have never been this owned.
12
gingerbrat [she/her] - 5mon
Ouch
5
Keld [he/him, any] - 5mon
Tiny human on public transport: :D
Tiny human having a meltdown on public transport: D:
10
Keld [he/him, any] - 5mon
How is the tiny human still melting down.
I want to help you little human but your mom can't get you to say what's wrong.
10
DisabledAceSocialist [comrade/them] - 5mon
I think I am going to stop engaging with medical treatment, apart from taking my thyroxine. It doesn't help at all and just makes me worse. I've been wondering why I've been feeling so tired lately and falling asleep in the afternoons again, then i remembered the dumb endo lowered my thyroxine dose. She even threatened to lower it further at my next appointment. She gaslights me that this low dose isn't really making me tired. I've had enough of this shit. I mean, there is no good dose, the higher dose gives me awful side effects and so does the lower dose, this will never end, but I can't stand being this tired any more. From now on will take whatever dose of thyroxine I want and my migraine tablets and nothing else. If these new migraine tablets the neuro gives me don't work or have side effects and she refuses to prescribe me my acute ones then I will buy the accute ones online, even if I have to make a mutual aid post about it. Luckily I have stockpiled quite a few already from my previous prescriptions though. I am cancelling my next endo appointment, I've cancelled my upcoming two foot surgeries.
No more. No more appointments or drugs. The doctors and the meds don't help, the meds riddle me with side effects and the doctors gaslight me endlessly. I really just want to go to dignitas but I need to find the travel money and I don't have the energy to organise all this. But I really feel like I'm done with all this medical shit. I'll do the bare minimum to keep myself alive for now and absolutely no more. All appointments are being cancelled. I really only stuck most of them out this long to help with my benefit appeal, and if all the medical shit I've had done to me so far isn't enough to win it, then nothing will be. I have to provide an updated letter of medical support for my appeal and all the medical crap I've had so far will just have to be enough. Just too exhausted to continue with this nonsense.
10
Keld [he/him, any] - 5mon
This is too heavy for me. I wish I could help you.
All I can say is that i think you've done well these last past few weeks in advocating for yourself and I think you should at least keep that up. You matter for as long as you are here.
6
DisabledAceSocialist [comrade/them] - 5mon
Thanks. You know what's even more enraging? Not long ago a person on mutual aid helped me to become a member of dignitas. To become a member, you need to print out and fill in the "Declaration of Membership" form. I don't have a printer, so I tried to print it at the local library. I was unable to, because the library has blocked dignitas' website and won't allow people to access it on the library computer! It's yet another aspect of poverty - if you're rich you probably have your own printer and can access whatever websites you want. The poorer you are the fewer choices you have in life. And what business is it of the library anyway if someone wants to go to dignitas - who made them the moral arbiter of assisted suicide prevention?
In the end I found a way around it, by writing the declaration of membership out myself. I was reminded of this today because I need to print some stuff out for my benefit appeal but don't have the money to do it as no-one has responded to the latest mutual aid post. Even when it comes to trying to access benefits - money needed to live - I can't do all I need to do because of lack of money. This world is fvcked up and evil. Some demiurge created this shithole to have a laugh at our expense.
7
Keld [he/him, any] - 5mon
I wouldn't put it past the government to have made a blanket list of banned subjects for public institutions, which would include assisted dying. That sort of micromanagement seems very in line with the British government
I cant advise you on dignitas. But with regards to everything else, you've been resourceful with white lies, small deceptions and asking people directly before. I'm sure you can find someone to lean on to get a print or two. Maybe just asking the librarian directly? Surely they know the system is fucked too.
4
DisabledAceSocialist [comrade/them] - 5mon
Well, until I can pay for a doctor's letter anyway, the printing won't be happening.
4
un_mask_me [any] - 5mon
Know that you're loved and supported, comrade. You've been through so much.
3
DisabledAceSocialist [comrade/them] - 5mon
Thank you.
2
gingerbrat [she/her] - 5mon
I can't begin to understand the frustration and exhaustion you're feeling, love. Just... I love you
3
DisabledAceSocialist [comrade/them] - 5mon
Thank you. The friends I've made here are literally my only comfort in life right now. I really think I'm going to actually apply to dignitas and see if they will help me. If they were being truthful when I spoke to them before about being willing to do it for free, then I maybe could get the money for travel costs. But then again I'm still struggling to get the cash to get a doctor's note and do some printing for my benefit appeal. I have to continue with that for now in case dignitas doesn't work out.
It might sound OTT but it feels like discrimination that I can't access this service in the UK. People would be outraged if people weren't allowed to do what they want with their own bodies when it comes to abortion, gender reassignment etc but I am not allowed to do what I want with my own body.
4
BountifulEggnog [she/her] - 5mon
I try so hard to be understood and it just doesn't work out :cri: like I know NTs get misunderstood too, idk. Its very frustrating running over and over what I'm going to say, what I'm hoping they'll say, and they just immediately misunderstand and I walk away with them not getting it at all. At least this latest thing was not terribly important but its frustrating regardless.
10
Dort_Owl [they/them, any] - 5mon
Mood. I'm right there with you lately. Feels like walking on eggshells.
5
gingerbrat [she/her] - 5mon
I'm sorry to hear you're struggling so much with being understood. If you want a hug, here is one
If I may ask, and only if you're comfortable with talking about it, what do you think makes being understood so difficult in a conversation? Like, what do you feel is missing?
5
BountifulEggnog [she/her] - 5mon
Thank you
I'm not really sure what I can do better. Sometimes people just interpret what I say like, completely differently from how I anticipated. Or people will latch on to one part of what I'm saying too much when it wasn't meant to be the whole meaning. Sometimes I also just, don't know how to explain something. idk, maybe this is a 'tism thing, maybe I'm only misunderstood a typical amount.
3
gingerbrat [she/her] - 5mon
Anytime
Do you have an example?
3
Keld [he/him, any] - 5mon
It should always be around 15 c around me at all times. Its too hot.
9
SterlingPooper [none/use name] - 5mon
::: spoiler Too scared to call therapist
Still too scared to call the therapist. I don't know if it's going to be a consultation or if I'm just scheduling the consultation. I want to just go in person but I don't know if it's an option.
I'm too scared to pick up the phone. I'll just never make calls again. I feel like an idiot. Like I can't make myself do this, I keep trying and sitting on the website and staring at it. I would rather dissociate and daydream for 10 hours than make this call.
I do not think I can make myself do it. Which means I'll never make autistic friends or queer friends. Fuck. Like I'm completely fucked. I'm fucked.
Like in my brain it would be easier if something happened to me, and then it's out of my hands. People would care about me because the situation demands it. It's not me chipping away, wearing people down with inane questions for months because people said "ask questions" and "be persistent". The war of attrition that is neurotypical socialization is a fucking travesty.
I can't do it. I'd literally rather cry and scream and break things. I wish I could spontaneously combust. That would feel better than this. I can't make the phone call and will get worse until I do and I'm selfish for hoping anyone has anything uplifting to say, if previous attempts to open up are anything to go off of
Idk what to do anymore. I can't make myself do this. I can't. I don't know how. I'm too scared. Like I'm gonna throw my phone out the window or something or like scream idk. I can't.
The office is closed for the day. Guess I'll do drugs and watch porn or something until it's time to be too scared to call tomorrow. Like I'm gonna fucking die holy fucking shit
:::
8
gingerbrat [she/her] - 5mon
5
Beetle [hy/hym] - 5mon
Is it possible to send an email instead and explain that you have phone anxiety? I’m really sorry you’re going through this :/ It’s not as urgent but I’ve been procrastinating calling my dentist for half a year now due to anxiety. It’s weird how something that is so easy on paper can be so difficult in reality.
4
Keld [he/him, any] - 5mon
I forgot to pack a lunch and im trapped at campus because of a weather warning.
This is entirely my fault and I'm still mad.
8
TheSpectreOfGay [hy/hym, she/her] - 5mon
im tired of constantly feeling like im pathetic for not being able to do as much as i did before. as though "as much as i did before" didn't lead to really bad burn out that stopped me from being able to function
maybe i will actually try to do nothing WITHOUT feeling guilty this week
7
DisabledAceSocialist [comrade/them] - 5mon
Society makes us feel pathetic for not being able to do as much as other people. But actually, I'd say we try even harder than healthy people. Just basic every day things are so much more difficult and more effort if you're disabled.
6
Keld [he/him, any] - 5mon
Ive made spaghetti and I'm going to eat it outside on a bench in the shade with a pitcher of ice water while listening to some kinda music with a violin in it I've decided.
7
musicenjoyer [it/its, xe/xem] - 5mon
I think I may have ADHD but talking about it with therapist hasn't been much help. Rehash of focus harder , do more exercise, check your diet . paying attention and not stimming for even a minute is hard even with those changes.
7
TheSpectreOfGay [hy/hym, she/her] - 5mon
your therapist sucks and is trying to gaslight you out of having symptoms. would highly recommend getting a new therapist who specializes in that sort of thing, bc constant invalidation from an authority figure isn't good for you!!
6
musicenjoyer [it/its, xe/xem] - 5mon
Frustrating since other mh professionals recommend the same things
2
TheSpectreOfGay [hy/hym, she/her] - 5mon
yea... a lot of therapists are trained in cbt, which operates under the assumption your problems aren't real problems. so if your problems ARE real problems, they end up just gaslighting/invalidating you. it sucks! but it's a product of capitalism just wanting everyone to be a good worker drone, so idk what i expected
3
robot_dog_with_gun [they/them] - 5mon
"just do precisely what your condition makes impossible. that'll be $200"
4
un_mask_me [any] - 5mon
Might have a herniated disc and can't move without pain. I'll be on the floor if you need me.
7
gingerbrat [she/her] - 5mon
Oh no love
5
DisabledAceSocialist [comrade/them] - 5mon
Shit! Can you call an ambulance?
4
un_mask_me [any] - 5mon
No, it's one of those things where I'm pretty much just stuck lying down for 4-5 days on otc anti-inflammatory meds. It's happened before, they think two lower discs are impacted/pinched together and every now and again it flares up. Also, I can't afford a doctor right now, unfortunately, so I'm just doing what I've been recommended before. An ambulance costs between $2-5k, and the shitty insurance I have wouldn't cover all the x-rays or the doc visit, it'd probably be another $3k to get checked out. I'm doing better today though! I can stand upright and even move around a bit so I'm hopeful that resting will be enough for now.
4
roux [they/them, xe/xem] - 5mon
My therapist says I have to take a mental health day on Friday. The nerve of that woman...
But yeah I'm on the verge of mental collapse so it's probably for the better. Thinking about just marathoning Mad Max or something.
7
gingerbrat [she/her] - 5mon
The nerve of that woman...
She's right tho. Please do take the mental health day, you need it, love
7
roux [they/them, xe/xem] - 5mon
Yes, ma'am!
5
gingerbrat [she/her] - 5mon
5
Keld [he/him, any] - 5mon
As a white atheist who can handle stairs is it my place to point out that the prayer room only being accessible by stairs is odd.
I wouldn't care except the priest is handicap accessible.
Also its weird that basically every public institution in this country has a staff priest.
7
DisabledAceSocialist [comrade/them] - 5mon
I would prefer it if everywhere had a staff Druid.
8
gingerbrat [she/her] - 5mon
It would definitely be more fun for starters
6
Keld [he/him, any] - 5mon
I could never support state funding of perversion (British culture) like that
3
DisabledAceSocialist [comrade/them] - 5mon
There are druid orders all over the world.
5
gingerbrat [she/her] - 5mon
Shush you, druids are great and not necessarily British
4
Keld [he/him, any] - 5mon
I will accept the proposal on the condition that any state funded druid swear an oath of anti terfdom
5
gingerbrat [she/her] - 5mon
I think anything state funded needs to swear that oath (and also everything not-state funded)
5
CupcakeOfSpice [she/her, fae/faer] - 5mon
Hey, sorry I disappeared a bit. I'd ask how it's goin, but it doesn't look like the answer is "fantabulous." Shit's fucked, I'm sorry folks.
7
gingerbrat [she/her] - 5mon
Either way, happy to welcome you back! And while it isn't going fantabulous, we all still are
4
CupcakeOfSpice [she/her, fae/faer] - 5mon
I unlocked this new mini game with my brain where I take medicine to try to sleep and my brain keeps me up anyway. Last two nights I've hardly gotten any sleep. I usually have trouble sleeping, but melatonin usually gets the job done. I hope this is a fluke and not a trend, though.
6
Keld [he/him, any] - 5mon
People are already starting to study up for next semester. It starts in the beginning of september/very end of August.
I am one of the late starters of the nerds because I am just starting myself.
6
gingerbrat [she/her] - 5mon
You start in your own time and as long as you feel prepared, the time you start is irrelevant
5
Keld [he/him, any] - 5mon
I thought I was getting a head start
4
gingerbrat [she/her] - 5mon
oh no
6
la_tasalana_intissari_mata [comrade/them] - 5mon
a frog living in a polluted pond doesn't need a meal in olive garden.
6
iArtemis [she/her, fae/faer] - 5mon
I moved!!!! I was in a pretty bad rut for a while, and I haven't seen any doctors for anything for 4.5 years but I signed up for a local clinic, dentist, and psychiatrist all at once this week! I hope It feels like I'm free-falling by trusting anyone but myself with my mental health, but hopefully it wont blow up in my face this time around.
6
un_mask_me [any] - 5mon
Congrats! That's a lot of progress, hope it continues in the right direction for you.
6
DisabledAceSocialist [comrade/them] - 5mon
My landlady has her daughter, SIL and kids visiting. I really think the daughter is the most spoilt and unpleasant person imaginible. Despite being asked not to spray scented shit in the house to avoid giving me a migraine, she let her 12 year old son douse himself in body spray all over the house. The house was filled with it. I've been unwell all night. My new migraine meds mean the migraine wasn't as bad as it would have been otherwise, but I still feel awful. I could write a book about how horrid the daughter is. Every time she comes, she spends a fortune filling the fridge with food and then throws most of it away. If I ask for some, she rudely refuses and throws it away instead of letting me have any.
Pegasos got back to me and said if I wait a few years to show a continued desire for assisted suicide and bring a friend along, they might consider me in the future. But I don't have any friends now and being virtually housebound, I'm unlikely to make any. Honestly I've gotten so desperate I even considered trying to find someone to marry me to become my next of kin and take me sto Switzerland but who on earth would agree to that? Maybe i should make a mutual aid post about it.
6
gingerbrat [she/her] - 5mon
On top of everything else that's going on, I seem to have caught a cold/cough/sore throat. I want uppies
6
un_mask_me [any] - 5mon
Oh no... Do take care love
5
gingerbrat [she/her] - 5mon
3
DisabledAceSocialist [comrade/them] - 5mon
Sorry to hear that. Maybe get a covid check just in case.
5
gingerbrat [she/her] - 5mon
Thank you
I don't even know if we still can get tests here, otherwise I'd have bought one today. I'll see what I can do.
5
Keld [he/him, any] - 5mon
The weather is apparently bad enough that a bunch of busses got csncelled, and i thought that included mine.
Turns out it didn't. Woo.
6
un_mask_me [any] - 5mon
Hope you got home safe okay!
4
Keld [he/him, any] - 5mon
I lived.
4
sunshinesoul [they/them] - 5mon
leg pain has been pretty bad lately aggravated by the weather so i'm stuck using my cane more than i've had to in almost a year :') also having to deal with a lot of brain fog from my mental health medication and it makes me feel like i can't type a coherent sentence so there's that too. we push through i guess
::: spoiler not sure how to tag this but could be needed? a lot of self-loathing/invalidation ig
ive been dealing with this issue for 9 years and i still havent mentally accepted that its going to affect my everyday life at least through the near future. i walked in to my psychiatric IOP program the other day with my cane (the first time i ever used it there, short walk from the parking lot means i dont need it 95% of the time in that building) and the looks i got from the other clients ive come to trust just made me ... embarrassed? i guess it was just jarring for people to see for the first time but i cant help but shake the fact that they think less of me now or that they think i'm doing it for attention? a couple of my ex long-term friends used to poke fun at my cane usage and call me a "grandpa" etc so that experience definitely hasn't helped idk.
:::
6
Keld [he/him, any] - 5mon
I have a suggestion for you. Its gonna sound stupid and you're ok for telling me to fuck off.
Get a really cool cane. Like one with flames painted on it, or floral patterns carved into the handle, or something like that.
You dont even need to use it more than once or twice, you can borrow it if you want and deliver it back after having tried it.
If you need a cane you need a cane, and any asshole who would judge you for that will judge you for any perceived weakness and can fuck off anyway. Anyone in any kind of care situation should be sensitive anyway.
So own it. You clearly feel shame around it, but you shouldn't need to. You haven't done anything wrong by needing a cane, and its a part of your daily wear anyway so make it something cool.
And if its a cool accessory then the conversation can switch from "Oh theyre disabled" to "Check out my bitching cane", and the conversation can be about something besides your disability, or at least it can be about your disability in the context of who you are and how you express yourself.
3
sunshinesoul [they/them] - 5mon
not a stupid suggestion at all and once i have the finances i will most likely be getting my hands on one. i ran into a super cool cane a few years back at a thrift store that was wood-carved, but it was way too tall for me and i've been wanting a similar one ever since haha. a lot of my shame around my cane usage just stems from self-invalidation and feeling like i'm "not disabled/in pain enough" to justify using a mobility aid, which is something i've been trying to address and work through but i still have a long way to go. i appreciate the kind words and advice!
2
DisabledAceSocialist [comrade/them] - 5mon
I haven't been too active here the past few days as I haven't been feeling great. The pins and needles/tingling spread to my face, maybe it's a migraine? No idea. One of the surgical wounds on my feet is infected and I can't get medical help. I tried to get a doctor's appointment yesterday, the receptionist said a doctor would phone me, I waited all day but they didn't. So I asked the pharmacist to prescribe me antibiotics but he said he can't do that because he's a locum and I have to wait for the regular pharmacist to come back. As I am waiting for the car repair I can't travel any further (the GP/pharmacy is about 10 houses down from me so I can get there without a car, although even that is difficult right now with my foot issues) so I am not going to the hospital for this - I don't want to sit there for 10 hours waiting to be seen anyway. So I've put an iodine patch on it and I'm hoping that will get rid of the infection. Normally I prefer not to use antibiotics for infected surgical wounds and prefer to use iodine patches instead but the iodine doesn't seem to be working quite as well this time.
The neurologist gave me a follow-up phone appointment about my migraines and has pressured me into accepting a new migraine preventative drug. The big problem with this is, it's not safe to take an acute treatment with it. So if the preventative doesn't work and I get a terrible migraine, am I supposed to just grin and bear it? And I mentioned my pins and needles, as it could be neurological, and asked for an appointment to get checked out and she said she doesn't deal with other neurological issues, she only deals with migraines! What the hell? I thought if you're a neurologist you deal with all neurological issues but apparently not. She said if I want a neurologist to check me out for this I have to ask the GP to refer me and be on a waiting list for about a year. Not to mention how difficult it is to even get a GP appointment now. It is just so difficult and exhausting trying to access medical treatment these days.
And due to the foot/leg issues my further foot surgery is going to be postponed. I don't know how long for. At least the previous surgeries got rid of most of the problem, what remains will have to be treated with topical treatments.
Oh UK, just hurry up and legalise assisted suicide already.
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gingerbrat [she/her] - 5mon
I'm so sorry, love
3
DisabledAceSocialist [comrade/them] - 5mon
Thank you.
4
gingerbrat [she/her] - 5mon
Hugs for everyone who wants them, I love you all
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roux [they/them, xe/xem] - 5mon
Can I get an extra hug? Work is still shit and I have a dentist appointment tomorrow to get a cavity filled. Also my app I'm writing doesn't work and idk why. Probably my fault for vibe coding it instead of actually writing it.
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un_mask_me [any] - 5mon
5
gingerbrat [she/her] - 5mon
You can get as many hugs as you want
I hope the dentist appointment goes well, and the vibes in your app are good enough to work. Don't fret, it'll be alright
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DisabledAceSocialist [comrade/them] - 5mon
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un_mask_me [any] - 5mon
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Dort_Owl [they/them, any] - 5mon
I'm going through it, but I'm trying my best.
I can't always be me, I hope people understand.
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gingerbrat [she/her] - 5mon
We do understand, and you don't have to be anything that makes you feel uncomfortable. Hang in there, we believe in you
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ahrienby [any] - 5mon
As a fellow disabled person, transfem YouTuber Rain, the Radical Dame, is working on the clock despite getting tired usually. I just had to help her get some rest if she feels tired.
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un_mask_me [any] - 5mon
60+ new comments
I'm back. How is everyone?
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DisabledAceSocialist [comrade/them] - 5mon
Nice to see you.
4
un_mask_me [any] - 5mon
Thank you, I appreciate you
3
gingerbrat [she/her] - 5mon
Glad you're back
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un_mask_me [any] - 5mon
Thanks, love
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DisabledAceSocialist [comrade/them] - 5mon
This month is proving even more difficult than usual. Two recent foot surgeries, now infected, the endless struggle to get even a bit of medical treatment, the non stop tingling and pins and needles, starting to go bald, the car breaking down and needing repairs, the neurologist stopping the only migraine meds that work for me because "they aren't working well enough," and the endless struggle to get assistance. Several people came through after all my reposts, eventually we managed to get enough to fix and fill the car but that used up almost all the money on that, and it's so difficult to get replies to mutual aid posts now, thanks to the most recent reply, I can get by with food for maybe a week now but after that I'll have to keep reposting and if no-one responds I'll be screwed. Apparently someone was accused of being a scam artist on mutual aid and now people are less likely to donate for fear they are being scammed?
All avenues of help are closing. My local council cut the Household Support Fund (a small amount given out to the poor twice a year) right down, it started off as £150 twice a year, then they cut it down to £100 once a year, and then they decided they were only giving it to old age pensioners. So that support is gone. I was due to receive a £300 grant from the cancer charity macmillan in November, but they decided not to give grants any more, so that lifeline is gone. There is nothing else I am eligible for, the food bank takes up to two weeks to access and gives a tiny amount of food, mostly drinks like tea, coffee and milk, which all runs out long before the next food bank appointment, how am I meant to get by on that? Mutual aid is the final lifeline, and I am immensely grateful for all the help I've received here but it's getting more difficult to get responses there too, and with prices going up drastically (by about two fifths these past few months) money just doesn't go as far. Is it just a bad time of the month, far from payday, or will I have to keep reposting every week or few days from now on? I even made my mutual aid post as helpful as possible, multiple food voucher links with various different payment methods, amazon gift card link (can get dried/tinned food off there) and even paypal (as my need for food aid right now is bigger than my worries about the DWP checking my accounts). Don't know what I can do to make it easier. That's why I'm up so late tonight, i thought if I waited long enough and kept checking my emails I might get a gift card and could go to sleep in peace but it's 1.30am now and I'll have to go to bed worrying.
On top of this, the fact that I've been almost housebound for so long is really wrecking my mood even more. I need to get out and walk around in the fresh air but due to all my foot surgeries, foot infections, and the repeated injuries in my left side thanks to the weakness caused by my stroke, I can't wear closed shoes or walk for more than a few minutes right now. Like hobble into a shop, pick up a few items and out. I want to hike. I live right by the southwest coast path, a 630 mile hiking route that goes around the entire south west coast of England. I've got a free bus pass from the council (as I'm partially sighted) and a ferry pass from before all my walking problems started, that still has about 8 free journeys left on it. If I wasn't almost crippled I could use these things to go out on day hikes and then get the bus home, get the ferry to other towns and hike all around, which is what I used to do before all these problems began. It's not much to ask, wanting to walk around outside but the universe won't even grant me that. I feel like whatever controls this world is taunting me, placing me right by a brilliant hiking area and then crippling me so i can't use it.
And everything costs money, constantly. It's hard enough getting the necessities of life, never mind anything for pleasure. I'm a huge Outlander fan and the new Outlander spin-off series is starting on amazon next month. Will I be able to watch it? No of course not because you have to pay for that! Why does life have to suck so damn much all the bloody time? Maybe I was evil in a past life and this is my karma.
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gingerbrat [she/her] - 5mon
I just want you to be able to go outside and forget your worries for a spell. Oh love, you did nothing to deserve this
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DisabledAceSocialist [comrade/them] - 5mon
Thank you.
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un_mask_me [any] - 5mon
I'm so sorry it's one thing after another, love. Please know you didn't do anything to 'deserve' what's been forced on you. I don't know if it makes it better or worse, but it's not your fault.
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DisabledAceSocialist [comrade/them] - 5mon
Thanks.
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un_mask_me [any] - 5mon
I'll be less active for the next few days while I attend a funeral out of town. Probably back later in the week since I'll be driving. Wishing all of you a better week, stay safe and keep lovin on one another.
35 years ago today they passed the Americans with Disabilities Act (ADA) which prohibits discrimination on the basis of disability in both private and state government sectors. Idk if it's worth any praise at this point, but at least it exists, I guess. We still have a long, long way to go to actually provide for our disabled population in this country.
::: spoiler seriously though...
:::
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Keld [he/him, any] - 5mon
I make jokes and then I realise two hours later that actually it could be taken as a sex thing and my interlocutor probably did 🙃
5
DisabledAceSocialist [comrade/them] - 5mon
I joined dignitas recently, and was told they can even offer free assisted suicide if someone is very poor, but they have to pay their own travel costs. So I didn't do anything about it for a while. But over the past few days I thought I can at least get the ball rolling, if I can get accepted then as soon as I can get some money I can go. Also my medical conditions seem to be deteriorating and I have been feeling worse than usual. So I decided to go ahead with the matter, only to find that the documentation they need is insane. I thought it would be a simple issue of providing copies of medical records, but no. Aside from needing a ton of medical records, past and present, they want a ridiculous amount of identity verification. I don't have a passport right now but if I got one, wouldn't that be enough? NO! On top of that they want a declaration of your identity signed by a notary, your parents' birth certificates and all kinds of other crap. My father was from Turkey, they don't even have birth certificates in Turkey. If you're unmarried you even need to swear a statutory declaration before a commisioner of oaths, that you've never been married and this apparently costs £100. You also have to provide 4 types of other ID like bank statements, utility bills etc. I can get bank statements, but bills? I pay all that included in my rent. (Or at least I do when I'm in receipt of benefits and actually paying rent.) I guess I could provide a bank statement and a letter from the DWP. I have a government-issued bus pass, maybe that would do too? Don't know what else I can get.
Now, there are several other suicide clinics in Switzerland that don't require so much documentation. However, unlike dignitas, as far as I'm aware they don't offer discounted or free suicide. I have emailed them to check and I'm waiting for a response.
But the other thing with dignitas is they are quite insistent that you bring a relative along to show their support for what you are doing. This is because when people get assisted suicide against their family's wishes, the family complain in the media and it makes dignitas look bad and turns people against legal assisted suicide. But what if you have no family? There is so much to find out about all the hoops I'd have to jump through and they are slow to respond. Why is everything always so difficult?
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TheSpectreOfGay [hy/hym, she/her] - 5mon
god that's crazy. i guess i shouldn't be surprised that there's additional requirements that stop most people from being able to use it, but sigh. Having to take a family member with you is absolutely insane.
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DisabledAceSocialist [comrade/them] - 5mon
Thank you! I felt like I'm the crazy one thinking this is nuts. They say it's because in the past people have gone to dignitas without their family's consent and their family then complains about dignitas in the press, which makes dignitas look bad. They want you to bring your family to prove to the world that they support your decision. But imagine if you needed your family's support for anything else involving your bodily autonomy, like having an abortion, a gender reassignment or even cosmetic body modification. People would rightly see it as outrageous and infantilising. But in this case it's apparently fine. And if you're British and accompany your relative to dignitas for an assisted suicide, you can theoretically get up to 14 years in prison so it's dangerous for the family members too. And I still don't know what people without living family members are meant to do, dignitas are taking ages to respond to my emails.
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TheSpectreOfGay [hy/hym, she/her] - 5mon
You shouldn't need your family's support for that. I can't imagine those people went through with that without their family's support bc they weren't actually suffering... Just that their family didn't understand or care about their suffering...
:/ it sucks so much. people who get that mad about assisted death existing for people suffering are so clearly privileged it's crazy.
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DisabledAceSocialist [comrade/them] - 5mon
I know right! All these people sitting in their ivory towers, no idea what it's like to be permanently unwell, judging something they don't understand. I think next time I will say, imagine having severe covid 24/7 plus a cracked skull and broken legs 24/7. With no chance of a cure. maybe then they'll start to understand but I doubt it.
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TheSpectreOfGay [hy/hym, she/her] - 5mon
they'll probably just say you're exaggerating
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un_mask_me [any] - 5mon
Even having help with a more dignified end turns out to belong to the privileged. I get that they want to be sure, but it just seems like added cruelty. I hope in the interim you can get your doctor's letter and your benefits come through.
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DisabledAceSocialist [comrade/them] - 5mon
Thank you. I'm still struggling to get enough to pay for the doctor's letter and print/photocopy the documents I need but someone came through with part of the money so maybe I can get the rest soon.
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gingerbrat [she/her] - 5mon
I think the main problem with assisted suicide is that the providers are afraid of allowing someone to die who could be saved/treated to become well again. Furthermore, I think they need their assurances that you are of clear mind when you're making that decision. A family member of any sort is probably one of the safest assurances they can get, though I think any good friend would do. Still, the birth certificates of your parents? How tf are you supposed to get all this stuff??
I didn't think it'd be easy to get but yeah, killing yourself like this isn't easy, and while I agree it's ridiculously expensive, I do think there should be a lot of hurdles to deter people from choosing death lightly. The relatives thing is beyond me, however. I hope you find a way that works out for you.
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DisabledAceSocialist [comrade/them] - 5mon
I don't think there should be a lot of hurdles, it's a matter of human freedom. People are outraged when abortion or gender reassignments are illegal or difficult to get. Imagine if you weren't allowed an abortion or gender reassignment unless your family agreed and showed their support.
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gingerbrat [she/her] - 5mon
Oh no, don't get me wrong, I agree with you on that one, and I also don't think the family thing should be a thing, but I also don't think you should be able to knock on their door and ask "Could you help me die?" and they just say yes. It should be easier, but not that easy. And while I do agree that gender reassignment as well as abortion need to be more easily accessible, I think there's a big difference between those two and assisted suicide. The former are about how you wanna live your life, the latter about how you wanna end it.
Please don't take this the wrong way, I'm just trying to explain why I disagree about hurdles in general, but not about these hurdles in particular. I think you deserve access to whatever you deem necessary, love, and you have suffered enough. I still believe that with proper healthcare treatment, you wouldn't have to be in this situation, but we both know it's not your fault it is this way. I hope this makes sense, and you don't feel offended by what I'm saying
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DisabledAceSocialist [comrade/them] - 5mon
I think it should be enough to prove your identity with a passport, provide some medical records as evidence of your disease and prognosis and have the two interviews with the clinic that help them decide. The excessive number of ID documents, multiple documents proving your place of residence, parents' birth certificates as well as yours, expensive sworn statements that you're not married, dragging family members along, plus years of backdated medical records (I mean, why? Your health now and in the future is what's relevant, not whether you were sick many years ago) is just excessive and makes it too difficult for many people to access.
I'm not offended, I'm just so exhausted that everything has so many hurdles to get over, especially while my health seems to be deteriorating and every little thing is an effort. I'll spend my entire life going through benefit appeals and reassessments at best, and at worst they'll end up stopping disability payments altogether. Every time i need anything I have to beg on here and usually make repeated requests. I am always fighting and struggling to access and keep my medications, and now i can't even just have an easy exit but have to go through millions of hoops to have a chance of getting to dignitas. I feel like a worn out old horse who should be sent to the knacker's yard but instead is forced to run a neverending steeplechase.
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gingerbrat [she/her] - 5mon
I agree completely, the medical stuff and documents should be enough to prove your case.
And yes, you deserve better, it's neither fair nor right that you have to ask for help online and otherwise. There's a system that is supposed to help you. You shouldn't be suffering like this, love. I hope the benefit appeal finally works out and you can get some rest. And I also hope you can find a way to work out the dignitas hurdles. I'm keeping my fingers crossed for you love.
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DisabledAceSocialist [comrade/them] - 5mon
Thank you. It just infuriates me that it's usually the same right-wing type people who don't want me to get disability benefits but also don't want me being able to access a peaceful end. Like, what do they want me to do? Christians are out there campaigning against assisted suicide but refused to give me a scrap of food when i begged for it. Lefties usually want to see me fed and able to choose a peaceful exit if i want.
I'm going to keep on with dignitas although it seems it will take a while, if it happens at all. Bit by bit if i can get some money here and there I can gradually try to get whatever ID documents I can, get my medical records and if it's eventually enough to get the green light from dignitas then one day maybe get enough to travel there.
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roux [they/them, xe/xem] - 5mon
Took my mental health day on Friday as prescribed by my therapist and gingerbrat. It was actually pretty nice. I did light laundry chores and made it to about halfway through the 4th(chronological) movie in the Mad Max franchise. I did work on a bit of code stuff but it was correcting typos in my business sites. Nothing too brainy. I also gave Satisfactory another attempt and I think I still hate it.
Then Saturday came and I got hit with a huge wave of depression all over again... I can't really afford to take a day off a week to try and be happy, just to turn around and be more depressed than I was before. I think a lot of it is still tied to my shitty job, my education going to waste, and me just wanting to get out of this daily work grind bullshit. I need to stop setting my worth at what my income is and I don't know how. I don't want to be like generational wealth rich or whatever but I'd just like this dumb business to take off but no one wants or needs a websites and no one wants to pay the real price for one.
I wrote another mobile app in 2 days again. It was inspired by those dumb digital business cards that use NFC to send your info to someone else's phone. This one doesn't have NFC because Android sucks and we can't have nice things. But it does have a QR code generator in it that creates one for each url you add. Think of it sort of as an Android app QR code equivalent to Linktree. But that was how I realized I was back in burnout. So, there is that.
Next stage of burnout is me getting fired.
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gingerbrat [she/her] - 5mon
Your mental health days sounds like a success, I'm glad you took it. As to the days after, I'm honestly not surprised. Making time for yourself when you are actually trying to accomplish anything always drags you down, as if self care was a neglect of duties. It's not, just so you know.
I need to stop setting my worth at what my income is and I don't know how.
You need a proper break, and I agree that you need to unlearn this. A solid income isn't going to make you feel better about yourself. It does help with precarious situations and relieve some stress, but what you need (like a lot of others) is a task or activity that makes you feel useful and purposeful. It'd be nice if the job could be that activity, but it often isn't. Don't give up, but also give yourself more breathing space. You're worthy, no matter how much you earn
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DisabledAceSocialist [comrade/them] - 5mon
After three days of trying to get a GP appointment or see the pharmacist for antibiotics for my infected surgical site, finally I managed to see the pharmacist and get some. It shouldn't be this hard to access medical treatment. And of course the infection has spread in that time.
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Keld [he/him, any] - 5mon
Did you get an answer on your blood test
4
DisabledAceSocialist [comrade/them] - 5mon
No, the only thing she said was that the kidney function was a bit low. Also the TSH was low, but it's meant to be kept low to stop the cancer coming back, so that's acceptable. But she was a nurse and said she didn't necessarily know how to read all the blood tests. She said she would get the doctor to look at it but that doctor never replies or follows anything up. I have an endo appointment in August, I'll ask her what she thinks.
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Keld [he/him, any] - 5mon
I guess its good she didn't try to diagnose you based on a blood test she didn't understand. Sometimes when places are overworked nurses will step into more and more of the doctor role until they're clearly out of their competency zone, and it sounds like they're fucked for doctor.
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DisabledAceSocialist [comrade/them] - 5mon
Yes, there used to be 4 regular doctors, but three retired recently. Now they have the one regular and a load of locums. It's chaos and awful.
4
Keld [he/him, any] - 5mon
I hate the vicariat in the healthcare system. Just employ people, not everyone can be a substitute.
A supermajority of the nurses at the place i usually get shifts are substitute, on temporary contracts or some employment agency workers on perenially renewed contracts, and as a result there's a huge organisational mess that they need to hire more short term workers to sort.
Sorry for the rant, I'm not trying to redirect from your issue, I just have a related issue.
3
DisabledAceSocialist [comrade/them] - 5mon
What country are you in?
4
Keld [he/him, any] - 5mon
Denmark
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gingerbrat [she/her] - 5mon
Fuck :/ I'm glad you got the antibiotics and I hope they'll help, but seriously, this took way too long
4
DisabledAceSocialist [comrade/them] - 5mon
Considering the state of the NHS now, I actually feel amazed I got them at all. I really thought the situation would deteriorate to the point I had to go to hospital.
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gingerbrat [she/her] - 5mon
That is an upside, despite everything. Please take care of yourself ❤️
2
DisabledAceSocialist [comrade/them] - 5mon
You too.
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DisabledAceSocialist [comrade/them] - 5mon
Well, I've been feeling more tired than usual (a side effect of my new migraine med which I decided to take after all) but I thought I'd report on my assisted suicide plans. They're not going well. There are 6 suicide clinics in Switzerland. Two don't accept foreigners. One doesn't give discounts. One isn't accepting new members. So that leaves two - dignitas and pegasos. I'm still going through the process with dignitas but i thought I'd also try pegasos as a backup. I just heard back from them and they said given my "relatively young age," they would require additional documentation from me, including a notarised letter from family members saying they support my decision and they'd have to come with me. I don't really have any family, I mean I have some cousins who live hundreds of miles away who I haven't seen in years. They don't care about me at all, they never check to see if I'm alright or need anything. You can technically get 14 years in prison in the UK for assisting someone to commit suicide, there is no way these cousins will drop everything, abandon their kids, travel hundreds of miles, spend loads of money and risk prison to help me do this. So pegasos is off the table. That only leaves dignitas but I know they are also keen on family involvement. It doesn't look like it's going to happen for me but I'll keep trying with dignitas until i get a definite no anyway.
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un_mask_me [any] - 5mon
I'm sorry to hear that it's all been dead ends. Seems dumb to require family, who you basically don't even know anymore, to vouch for any kind of procedure. Especially when they may as well be strangers. Hope the new med turns out beneficial.
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SterlingPooper [none/use name] - 5mon
Idk. I'm having a hard time with people infodumping in that I straight up tune out and start wondering "this has no relevance to me, why on earth are they still talking"
Like I can't pretend to care about something I straight up don't give a shit about. I can't listen to a recommendation and an indepth review of a show that I haven't seen and will never see.
If I were asked, I'd talk about it politely. Like, idk.
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SterlingPooper [none/use name] - 5mon
Wish someone cared that I had a bad time, that I felt left out. I'm gonna die a third wheel. Being around people is triggering, hearing about people who have transitioned is triggering, I'm ready to run into the woods. Fuck all of this.
::: spoiler Am I figuring out neurotypicals
I'm supposed to be honest but also not overshare how fucked up I am even though that is honesty, I'm supposed to want people not to care if I'm any gender when I want people to affirm my feminine side, and I'm supposed to get people to help me without realizing that they're helping me otherwise they'll say "not on your life, squirt." Or I'm supposed to ask endless questions like I'm filling out a form, I guess, to get to know them
:::
::: spoiler not good, folks
If it had been up to me, the right people wouldn't have left in the first place and I wouldn't have had to sit and figure out what the hell is wrong with me. I don't know if others are supposed to care. Maybe I just get therapy and transition and never tell anyone. But Hot Fuck it would be nice to have some sort of standard, or baseline, or average for what to shoot for, to start, for now.
It would be nice to have someone actively engaging with my problems because that's always what I've done for others. Checking in to see if they're making progress. Asking how they are. Maybe that's codependent and fucked up and gross and betrays boundaries. But it's what I want. Is it bad that I want some of the attention in my life to be unprompted? Am I a sinful beast for wanting the energy I have given to reciprocate in some recognizable form? Maybe I am awful for wanting that.
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SterlingPooper [none/use name] - 5mon
::: spoiler fuck
Like literally I might have to get worse to get better. I just don't see a path forward. I'm too old and too lacking. Do I really have to work this hard to find my people? Nobody else has to work this hard to get someone to have a conversation with them.
I don't want to die but like there's no life so it makes you think
:::
::: spoiler Kill Me
I can only really deduce that something is wrong with me because nobody will validate my concerns and that it's a reflection of me in some way. I am doing something to make people feel horrible when they talk to me or read my posts and they correctly decide that I suck
Doesn't matter that I'm nonbinary or autistic, people think I suck for some other secret reason being kept from me I guess by everyone. Like I don't know what I'm supposed to be making of situations where nothing I do is actually enough to get attention.
I'll be honest, I thought someone would at least pity me. I'd accept pity under the right circumstances. I wanted mutual emotional support, but clearly nobody is ever going to want to talk to me about emotions or processing thoughts or anything like that and it was a lost cause from the beginning.
I see people every day who just connect and talk about things and have no anxiety and I want to be like that so much and I resent that everyone else learned and nobody taught me. They all know what I don't and they won't tell me. And I'm supposed to be strong. God forbid I find myself feet-up at the bottom of a creek in the mountains. I get less support because I'm suffering.
Like, I'll start speaking up, and I guarantee that it'll be a problem, and I won't give a shit because no one ever bothered to even try to help me work through this. I don't know how to justify taking blame for behavior that I perceive to be someone else's fault. Seems like the person who made me upset shouldn't have done that.
Maybe help the person you know is struggling, the person you know is going through something you went through, or something you can help with. "No, I'm gonna wait for him to have the idea himself to put down the razor. He'll talk himself out of it, I mean, he talked himself into it, could work" 🤔
I'm genuinely confused as to why people don't notice and why people don't say more. Here and irl. It doesn't matter, obviously you decided not to care.
:::
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gingerbrat [she/her] - 5mon
::: spoiler If you feel I'm out of line, let me know and I'll delete the comment
I don't want you to think we don't care. We do, about everyone here, including you. Let me maybe explain why I at least feel unable to help you in the sense of seeing your struggles and supporting you emotionally.
Your problems of being unable to connect to people are valid, and you're far from being the only one here. What I feel makes it difficult for us to reply is your rejection of others. You want someone to care, while at the same time you say you can't bring yourself to care about someone telling you how great the show is they're infodumping about. It's alright not to want to watch this particular show, but the point of forming connections with others is to appreciate what they're passionate about, and to be able to receive the same appreciation in turn for what you're passionate about. This goes beyond watching shows, naturally, and only applies if you want to form a connection with this particular person.
A lot of what you write reminds me of myself irl, and let me tell you, it's only gonna hurt you to think about yourself as having to get worse to get better. It doesn't work. You'll only get worse and worse, more resentful, spiteful, hateful even. I'm not saying you need to be all sunshine and rainbows from now on, but I really recommend being more vulnerable. The only way to form connections is to let some people see you emotionally honest. And that means trying with new people until you find someone who will be this open with you too.
It's give and take, and while I appreciate that you seem to have been hurt before, the only way this hurt will heal is if you try again with forming connections. You're not a horrible person. You're not unlovable. You're you, and you decide who you want to be. And I think you're a beautiful person to be around - here and irl. Let yourself be.
:::
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SterlingPooper [none/use name] - 5mon
::: spoiler spoiler
My problem with holding space for others is actually that I've done it for so long that I guess I thought that someone would offer me the same. I'm inclined to stay quiet and listen, but I'm also burnt out from it, from listening to people so much and being asked so rarely. If someone asked me I would be so vulnerable. The problem is when I'm vulnerable people are consistently put off, but nobody will tell me how I'm supposed to phrase things in order to avoid that. I thought prompting others to ask would be better than just saying "Wow I want to die" devoid of any context. It gives other people the opportunity to help. I don't want to take someone hostage by talking about suicide or gender dysphoria and expecting them to care. That's a lot to place on others.
If this were the first time this person was telling me about the show, that's different. If this person weren't consistently talking over me and others, that's different. People ignore and talk over me when I want to infodump, and then I have your infodump and my infodump that I didn't get to say still in my head and I haven't gotten to dump anything anywhere. But it's my fault for having too much going on in my head. I'm burnt out from being thoughtful and mindful of others where it isn't reciprocated. Like if anyone would just ask. me. direct. questions. surprise surprise, I'd answer.
My perception is that I do a lot for others by being polite and not talking over them and listening to them. Other people will just talk over each other and be rude and not listen and I always try to listen as much as I can so they don't feel ignored. This same space is not held for me, and that is what I do not understand. I have always tried to be there for others.
I don't really think people want connection unless they're explicit about it. Like to me that's something that has to be stated and established. I don't want to build something with someone in some vague situationship that just ends because it's not convenient. I want it to be mutual and intentional.
I'd also argue that me saying any of this is me being vulnerable. But watch, somehow I'm doing it wrong, or doing it in the wrong time or place, or something. The goalposts keep moving.
:::
3
gingerbrat [she/her] - 5mon
::: spoiler spoiler
Okay, this makes a lot more sense now with context. Yeah, naturally you're fed up with just giving and not receiving. Out of curiosity, when you're being infodumped on or people just talk and talk and talk, do you ask for their attention to what you want to talk about? And if so, how do you ask and what is their reaction?
Just being there for others, with this politeness, usually doesn't lead to forming connections. What I've realized is the more you keep giving, the less people will give back. May it be attention or time or just the same basic courtesies you give them. The narrow line here is giving but establishing firm boundaries as to how far your politeness goes, and how much "being talked at" you'll accept before you leave. People tend to show you more respect for what you want and care about if you say "I'll listen to you talk about [infodump topic], but I also wanna share what's on my mind." It's just you taking up the space you need for yourself. If you do this, people who actually respect and like you and want to form connections with you will do so. I'm only speaking out of what I learned myself over the last couple of years, and I know it's precious little. It's also really hard to do this stuff.
And you are right about people being honest about forming connections. Only thing I'd add here is that sometimes, when you meet someone new, you don't know yet if you want to like this person or not. So people need time to get to know each other (this horrible thing called small talk), and that's when this decision starts to be made. Once they're sure, which comes from actually spending time together when the vibes are right, they will be more straightforward. It's a game of patience and a lot of rejection, and I'm not sure there even is a surefire way to find the mutual and intentional connection with others.
Hope this helps you a little bit and doesn't come off as a lecture. Let me know if I'm getting you wrong.
:::
3
DisabledAceSocialist [comrade/them] - 5mon
I just finished a course of antibiotics for my latest foot infection 2 days ago. It was seeming OK. Now the pain is back, I think it's infected again already and I don't want any more antibiotics, the last ones made me nauseated and gave me constant diarrhoea.
And I'm still struggling with my thyroxine issues, I'm so tired it's a struggle to stay awake or prepare food or anything. I was hoping someone would send me a justeat gift card so i could just order preprepared food until I have a bit more energy but my request is going unanswered. I guess I can't complain, there are a lot of people worse off than me needing help. It's such a sick world we live in where the most desperate people in the world have to compete with each other for food. It might as well be the Hunger Games at this point.
4
un_mask_me [any] - 5mon
It's ok to vent, you have a safe space here. There's no use pretending everything is okay, but at least we can share our thoughts and feelings in solidarity for one another. Sorry to hear your infection might still be around and your fatigue hasn't let up. Sending hugs, love.
4
DisabledAceSocialist [comrade/them] - 5mon
Thanks.
2
IbrahimTraore_Fangirl [she/her] - 5mon
a few days ago I was going to discuss with someone about my death, for a few moments I genuinely believed I died a long time ago and I was going to discuss it.
4
DisabledAceSocialist [comrade/them] - 5mon
Sorry to hear that. Do you have Cotard's syndrome?
3
IbrahimTraore_Fangirl [she/her] - 5mon
no, I don't want to clarify what disorder(s) I have, just needed to vent.
3
DisabledAceSocialist [comrade/them] - 5mon
I'm so exhausted because of my thyroxine issues right now. It's making it hard to get on and deal with my benefit appeal and the dignitas stuff, but I'm managing to do at least a little something towards them each day like send an email or fill out a form. other than that I am so tired I keep falling asleep during the day. I'm still trying to get the money together to pay for the doctor's note but apparently the only GP that knows me personally there is on holiday for 2 weeks so I guess there's no point rushing right now anyway. I feel like if I do at least one thing towards these two issues each day then at least some progress will get made, however slowly. And i'm going to need to pay for ID documents but have no money for that either. It's all so overwhelming the only thing I can do is one small thing each day.
For once though, one tiny good thing happened. Recently the neurologist said she wasn't going to prescribe my migraine tablet, rimegapant, any more because my migraine diary shows it isn't working well enough to justify the expense. (Apparently a pack of 8 tablets costs the NHS £125 and I've been getting 2 packs a month. The pharmacist scolded me a few months ago for costing the NHS so much money.) She prescribed a new tablet in it's place, but that was only delivered today so i haven't tried it yet. I've been very, very worried about managing without the rimegapant. Last week I quickly put in a repeat prescription request for my two boxes of rimegapant, hoping I'd be able to get it dispensed before the neurologist's letter arrives telling them not to dispense it any more. Today I received it, and when I opened the prescription bag, not only did it contain rimegapant but weirdly it contained 7 boxes instead of 2. A three and a half month supply instead of a 1 month supply. I can only assume the pharmacist made a mistake but I am keeping them. A small victory at last.
4
Mexidude93 [he/him] - 5mon
Damn comrade that sounds so exhausting. And to think that the NHS was world renowned at one point lol. Well I guess us Americans will have a new horrific round of medical austerity to put up with soon
3
DisabledAceSocialist [comrade/them] - 5mon
My understanding is Americans have been lobbying British politicians to gradually chip away at and dismantle the NHS. They want us to have private healthcare so they can sell healthcare to us. Those of us who rely on the NHS are just collateral damage for America to make bank.
3
Mexidude93 [he/him] - 5mon
Oh wow I didn't know that. I was actually referring to the new Medicaid cuts coming soon!
3
Keld [he/him, any] - 5mon
pharmacist scolded me a few months ago for costing the NHS so much money
Punch the pharmacist square in the mouth.
What the hell.
I would have flipped my lid had that happened in m general vicinity. The police would have had to drag me away i would have screamed that much in their face.
That is a small step from calling you a useless eater to your face.
3
DisabledAceSocialist [comrade/them] - 5mon
I already know 99% of the British population considers me a useless eater. Why they won't just put me out of my misery I do not know.
5
un_mask_me [any] - 5mon
That is good you got extra meds! Are the new ones she prescribed very similar or no? Using cost as a justification for that is so stupidly evil.
And honestly, doing just one little thing a day is more than enough. Hopefully those little things will build up and you'll be able to see something come from it without having to sacrifice too much. You deserve lots of rest and I hope you can find some relief soon. Has the tingling subsided at all?
2
DisabledAceSocialist [comrade/them] - 5mon
The new ones are a preventative and not used to get rid of a migraine when it happens. I don't think I'm going to try them as they have a lot of side effects and I can't use the rimegapant with them (they aren't safe to mix apparently), I'll have no acute treatment for when a migraine happens. The tingling comes and goes. Right now I'm just mostly exhausted from the lowered thyroid dose. I'm struggling to stay awake or do anything.
3
la_tasalana_intissari_mata [comrade/them] - 5mon
I kept screaming while sleeping last night, it was comprehensible.
4
Keld [he/him, any] - 5mon
Are you my neighbhour? And if so, why the screaming?
And if not, why the screaming?
1
la_tasalana_intissari_mata [comrade/them] - 5mon
this is not the place for humor
2
Keld [he/him, any] - 5mon
Okay but my neighbhour did scream all night and I am interested in knowing why you would be screaming.
1
la_tasalana_intissari_mata [comrade/them] - 5mon
I prefer not to clarify
3
Keld [he/him, any] - 5mon
Fair enough
1
Keld [he/him, any] - 5mon
Insight into non-anglo European med school for those interested:
When you are learning anatomy you always have to use the Latin names, it is considered an error to use any other language name...
Except for the articulatio zygapophysiales because no one can spell it. That is literally a rule.
un_mask_me in disabled
Disabled Community Megathread from July 14, 2025 to July 27, 2025
In my dreams, you lay your sorrow on the table, and the air between us is soft and we have time.
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.
Everyone supports "mental health" until they actually get called on to do it. I lived with nominally supportive housemates in college who would say "mental health is important! Believe in yourself!" Then when I started falling apart in my final year they got grossed out. They didn't want anything to do with me. Why invite the depressed person to anything? They're just gonna end up miserable. Talking about depression is gross and yucky, eww, uncomfortable, go to therapy, that's your fault. So they just ended up excluding me from everything they did because it was easier for them.
::: spoiler cw suicide It took a suicide attempt for them to even ask me if I was doing okay, after a year of my being vocally and visibly depressed. :::
It sucks finding out that good people can be bad friends. Yes, it would have been uncomfortable and difficult for them to help me. It would have taken some work. But they turned out to be the kind of friends who only like you when you're fun and smiling.
Obviously my depression made things harder for them. It made things harder for everyone. That's why I needed their help, and they didn't give it to me
for real. i guess it's the liberal thing about pretending to care about an issue so you look good? idk. also if you dont recover fast enough they get mad at you, lmao
The bootstrap mentality is omnipresent. You're on the ground, managed once to ask for help, and if you don't get up immediately, they leave you there.
And even if they don't think you're supposed to pull yourself up, they have so much learned helplessness with regards to actually helping that they watch on without doing anything. It's frustrating to no end
Yep. I had to quit working and drop out of my studies when I became too ill to continue and people were weirdly angry and judgmental about it. I got comments like "So when are you going back to school? Why don't you sign up to restart this coming term? When are you going back to work? You're not back working yet?" And I'm like "What? I'm having cancer treatment, I'm so unwell I keep falling asleep in the middle of the day, I can't concentrate, I have no energy and I'm having terrible side effects like heart issues and all kinds of other crap, I have non-stop medical appointments and fuckers are complaining that I'm not doing anything right now? As if fighting cancer is just not doing anything.
And the comments for being on benefits. Endless comments about how I'm getting "free money," and "You don't do anything to earn that, you don't deserve it. Lucky you, some of us have to work for our money."
dealing with benefits shit has been way more work than my previous bullshit job lmao, ppl r so stupid and annoying
Absolutely. Working a full time job was easier and less stressful than this.
I really think that almost everyone is like this. It was the same for me when I got cancer. At first people were shocked and sympathetic but as time wore on and my condition worsened, everyone abandoned me.
I actually hate being alive, being trapped in a physical body that's falling apart and literally rotten, painful, infested with infection, doesn't work, requires drugs to stay just barely alive, requires endless maintenance not to mention food, all of which takes time, effort and money. And for what? It's not like these issues are going to be solved, all that can be done is just try to keep on top of them as much as possible. You could probably be prosecuted for animal cruelty if you kept a pet alive in this condition, but a human must be forced to drag it out for as long as possible, for literally no reason whatsoever.
From the ages of about 18/19 to about 21/22 I went through a stage of sometimes having what I can only describe as intrusive visions, although they weren't unpleasant at all. I'd be doing something and suddenly I'd get an actual (maybe mental, I can't describe it exactly) vision of myself (from two perspectives at the same time, first person and third person) as a blonde Australian girl doing exactly the same thing in an alternate life. One time aged about 18 I was walking through a forest, I started jogging and suddenly my entire vision was taken over by this image of me as a blonde Australian girl running through a forest. It was accompanied by intense feelings that this was me in an alternate life. This other me was a total opposite version of myself, blonde where I'm dark, Australian where I'm British, and most of all she had the most positive, uplifted mood imaginable. (Even before my life became as bad as it is now I had depression and physical health issues and money and living situation problems so my mood wasn't brilliant). This Australian version of me was absolutely filled with hope and joy and love of life.
I had this experience several more times over the next few years. Aged around 20/21, I was with two friends, one was playing guitar and listening to it through headphones. He took the headphones off and gave them to another friend. As soon as this person put the headphones on I had another intense vision of us both as Australians, in a small private plane, about to take off. He was the pilot and was putting his pilot headphones on. Again I felt that sense of joy and love of life, we were clearly having great lives in this alternate reality.
It happened several other times, and after a few years it just stopped happening. I don't know whether it was a mental illness, a coping mechanism or what, I mean my life wasn't as bad then as it is now but it doesn't happen any more. It really felt like there was this parallel life out there somewhere, where I was the opposite of myself, living the opposite life where everything was brilliant. Sometimes I've wondered, if that version of me is actually real somewhere then maybe to balance the scales and pay for that great life I also have to live this life where everything is terrible and miserable and hopeless. Or maybe it's some cosmic learning experience, experiencing the best and the worst of life. Maybe it was just a coping mechanism to feel good for a few moments but then why don't I get it any more? I wish I could swap places and be that Australian.
Is anyone else annoyed by religious people, specifically christians, who assume you don’t believe because you resent that "God" put you in a wheelchair or gave you which ever disability you may have? No muthafucker I just don't accept you're inconsistent explanations for what happens to non-believers who never had a chance to "be saved"! I don't want to get all r/atheist on y'all so stop me if I do
well to be honest, while i do not believe in god for a variety of reasons, i wouldn't worship a god who cursed random people to suffer regardless of if he was real. fuck that guy.
I said don't tempt me Sheitan lol. But seriously I'm not religious either but if I was I still would not believe that interpretation of disability and I blame protestants for perpetrating search wretched beliefs. Protestantism really fucked Westerners up!
I'm pretty sure they do this kind of thing (along with because you want sin/you hate god/the church hurt you and I'm sure a million others) because they don't want to hear or think about your actual reasons. If you have an issue to point out with believing/worshiping they can't answer, they are happy to just glue another reason on you as being the real reason you don't believe. I've had many theists do this to me, its very lazy and transparent for anyone not already invested in their position. A deflection for the in group. Oh pay no attention to them, they're just mad at god! Why would we listen to someone who's mad at god?
The pharmacist heard my accent and switched to English. I have never been this owned.
Ouch
Tiny human on public transport: :D
Tiny human having a meltdown on public transport: D:
How is the tiny human still melting down. I want to help you little human but your mom can't get you to say what's wrong.
I think I am going to stop engaging with medical treatment, apart from taking my thyroxine. It doesn't help at all and just makes me worse. I've been wondering why I've been feeling so tired lately and falling asleep in the afternoons again, then i remembered the dumb endo lowered my thyroxine dose. She even threatened to lower it further at my next appointment. She gaslights me that this low dose isn't really making me tired. I've had enough of this shit. I mean, there is no good dose, the higher dose gives me awful side effects and so does the lower dose, this will never end, but I can't stand being this tired any more. From now on will take whatever dose of thyroxine I want and my migraine tablets and nothing else. If these new migraine tablets the neuro gives me don't work or have side effects and she refuses to prescribe me my acute ones then I will buy the accute ones online, even if I have to make a mutual aid post about it. Luckily I have stockpiled quite a few already from my previous prescriptions though. I am cancelling my next endo appointment, I've cancelled my upcoming two foot surgeries.
No more. No more appointments or drugs. The doctors and the meds don't help, the meds riddle me with side effects and the doctors gaslight me endlessly. I really just want to go to dignitas but I need to find the travel money and I don't have the energy to organise all this. But I really feel like I'm done with all this medical shit. I'll do the bare minimum to keep myself alive for now and absolutely no more. All appointments are being cancelled. I really only stuck most of them out this long to help with my benefit appeal, and if all the medical shit I've had done to me so far isn't enough to win it, then nothing will be. I have to provide an updated letter of medical support for my appeal and all the medical crap I've had so far will just have to be enough. Just too exhausted to continue with this nonsense.
This is too heavy for me. I wish I could help you. All I can say is that i think you've done well these last past few weeks in advocating for yourself and I think you should at least keep that up. You matter for as long as you are here.
Thanks. You know what's even more enraging? Not long ago a person on mutual aid helped me to become a member of dignitas. To become a member, you need to print out and fill in the "Declaration of Membership" form. I don't have a printer, so I tried to print it at the local library. I was unable to, because the library has blocked dignitas' website and won't allow people to access it on the library computer! It's yet another aspect of poverty - if you're rich you probably have your own printer and can access whatever websites you want. The poorer you are the fewer choices you have in life. And what business is it of the library anyway if someone wants to go to dignitas - who made them the moral arbiter of assisted suicide prevention?
In the end I found a way around it, by writing the declaration of membership out myself. I was reminded of this today because I need to print some stuff out for my benefit appeal but don't have the money to do it as no-one has responded to the latest mutual aid post. Even when it comes to trying to access benefits - money needed to live - I can't do all I need to do because of lack of money. This world is fvcked up and evil. Some demiurge created this shithole to have a laugh at our expense.
I wouldn't put it past the government to have made a blanket list of banned subjects for public institutions, which would include assisted dying. That sort of micromanagement seems very in line with the British government
I cant advise you on dignitas. But with regards to everything else, you've been resourceful with white lies, small deceptions and asking people directly before. I'm sure you can find someone to lean on to get a print or two. Maybe just asking the librarian directly? Surely they know the system is fucked too.
Well, until I can pay for a doctor's letter anyway, the printing won't be happening.
Know that you're loved and supported, comrade. You've been through so much.
Thank you.
I can't begin to understand the frustration and exhaustion you're feeling, love. Just...
I love you
Thank you. The friends I've made here are literally my only comfort in life right now. I really think I'm going to actually apply to dignitas and see if they will help me. If they were being truthful when I spoke to them before about being willing to do it for free, then I maybe could get the money for travel costs. But then again I'm still struggling to get the cash to get a doctor's note and do some printing for my benefit appeal. I have to continue with that for now in case dignitas doesn't work out.
It might sound OTT but it feels like discrimination that I can't access this service in the UK. People would be outraged if people weren't allowed to do what they want with their own bodies when it comes to abortion, gender reassignment etc but I am not allowed to do what I want with my own body.
I try so hard to be understood and it just doesn't work out :cri: like I know NTs get misunderstood too, idk. Its very frustrating running over and over what I'm going to say, what I'm hoping they'll say, and they just immediately misunderstand and I walk away with them not getting it at all. At least this latest thing was not terribly important but its frustrating regardless.
Mood. I'm right there with you lately. Feels like walking on eggshells.
I'm sorry to hear you're struggling so much with being understood. If you want a hug, here is one
If I may ask, and only if you're comfortable with talking about it, what do you think makes being understood so difficult in a conversation? Like, what do you feel is missing?
Thank you
I'm not really sure what I can do better. Sometimes people just interpret what I say like, completely differently from how I anticipated. Or people will latch on to one part of what I'm saying too much when it wasn't meant to be the whole meaning. Sometimes I also just, don't know how to explain something. idk, maybe this is a 'tism thing, maybe I'm only misunderstood a typical amount.
Anytime
Do you have an example?
It should always be around 15 c around me at all times. Its too hot.
::: spoiler Too scared to call therapist Still too scared to call the therapist. I don't know if it's going to be a consultation or if I'm just scheduling the consultation. I want to just go in person but I don't know if it's an option.
I'm too scared to pick up the phone. I'll just never make calls again. I feel like an idiot. Like I can't make myself do this, I keep trying and sitting on the website and staring at it. I would rather dissociate and daydream for 10 hours than make this call.
I do not think I can make myself do it. Which means I'll never make autistic friends or queer friends. Fuck. Like I'm completely fucked. I'm fucked.
Like in my brain it would be easier if something happened to me, and then it's out of my hands. People would care about me because the situation demands it. It's not me chipping away, wearing people down with inane questions for months because people said "ask questions" and "be persistent". The war of attrition that is neurotypical socialization is a fucking travesty.
I can't do it. I'd literally rather cry and scream and break things. I wish I could spontaneously combust. That would feel better than this. I can't make the phone call and will get worse until I do and I'm selfish for hoping anyone has anything uplifting to say, if previous attempts to open up are anything to go off of
Idk what to do anymore. I can't make myself do this. I can't. I don't know how. I'm too scared. Like I'm gonna throw my phone out the window or something or like scream idk. I can't.
The office is closed for the day. Guess I'll do drugs and watch porn or something until it's time to be too scared to call tomorrow. Like I'm gonna fucking die holy fucking shit :::
Is it possible to send an email instead and explain that you have phone anxiety? I’m really sorry you’re going through this :/ It’s not as urgent but I’ve been procrastinating calling my dentist for half a year now due to anxiety. It’s weird how something that is so easy on paper can be so difficult in reality.
I forgot to pack a lunch and im trapped at campus because of a weather warning. This is entirely my fault and I'm still mad.
im tired of constantly feeling like im pathetic for not being able to do as much as i did before. as though "as much as i did before" didn't lead to really bad burn out that stopped me from being able to function
maybe i will actually try to do nothing WITHOUT feeling guilty this week
Society makes us feel pathetic for not being able to do as much as other people. But actually, I'd say we try even harder than healthy people. Just basic every day things are so much more difficult and more effort if you're disabled.
Ive made spaghetti and I'm going to eat it outside on a bench in the shade with a pitcher of ice water while listening to some kinda music with a violin in it I've decided.
I think I may have ADHD but talking about it with therapist hasn't been much help. Rehash of focus harder , do more exercise, check your diet . paying attention and not stimming for even a minute is hard even with those changes.
your therapist sucks and is trying to gaslight you out of having symptoms. would highly recommend getting a new therapist who specializes in that sort of thing, bc constant invalidation from an authority figure isn't good for you!!
Frustrating since other mh professionals recommend the same things
yea... a lot of therapists are trained in cbt, which operates under the assumption your problems aren't real problems. so if your problems ARE real problems, they end up just gaslighting/invalidating you. it sucks! but it's a product of capitalism just wanting everyone to be a good worker drone, so idk what i expected
"just do precisely what your condition makes impossible. that'll be $200"
Might have a herniated disc and can't move without pain. I'll be on the floor if you need me.
Oh no love
Shit! Can you call an ambulance?
No, it's one of those things where I'm pretty much just stuck lying down for 4-5 days on otc anti-inflammatory meds. It's happened before, they think two lower discs are impacted/pinched together and every now and again it flares up. Also, I can't afford a doctor right now, unfortunately, so I'm just doing what I've been recommended before. An ambulance costs between $2-5k, and the shitty insurance I have wouldn't cover all the x-rays or the doc visit, it'd probably be another $3k to get checked out. I'm doing better today though! I can stand upright and even move around a bit so I'm hopeful that resting will be enough for now.
My therapist says I have to take a mental health day on Friday. The nerve of that woman...
But yeah I'm on the verge of mental collapse so it's probably for the better. Thinking about just marathoning Mad Max or something.
She's right tho. Please do take the mental health day, you need it, love
As a white atheist who can handle stairs is it my place to point out that the prayer room only being accessible by stairs is odd. I wouldn't care except the priest is handicap accessible.
Also its weird that basically every public institution in this country has a staff priest.
I would prefer it if everywhere had a staff Druid.
It would definitely be more fun for starters
I could never support state funding of perversion (British culture) like that
There are druid orders all over the world.
Shush you, druids are great and not necessarily British
I will accept the proposal on the condition that any state funded druid swear an oath of anti terfdom
I think anything state funded needs to swear that oath (and also everything not-state funded)
Hey, sorry I disappeared a bit. I'd ask how it's goin, but it doesn't look like the answer is "fantabulous." Shit's fucked, I'm sorry folks.
Either way, happy to welcome you back! And while it isn't going fantabulous, we all still are
I unlocked this new mini game with my brain where I take medicine to try to sleep and my brain keeps me up anyway. Last two nights I've hardly gotten any sleep. I usually have trouble sleeping, but melatonin usually gets the job done. I hope this is a fluke and not a trend, though.
People are already starting to study up for next semester. It starts in the beginning of september/very end of August. I am one of the late starters of the nerds because I am just starting myself.
You start in your own time and as long as you feel prepared, the time you start is irrelevant
I thought I was getting a head start
oh no
a frog living in a polluted pond doesn't need a meal in olive garden.
I moved!!!! I was in a pretty bad rut for a while, and I haven't seen any doctors for anything for 4.5 years but I signed up for a local clinic, dentist, and psychiatrist all at once this week! I hope It feels like I'm free-falling by trusting anyone but myself with my mental health, but hopefully it wont blow up in my face this time around.
Congrats! That's a lot of progress, hope it continues in the right direction for you.
My landlady has her daughter, SIL and kids visiting. I really think the daughter is the most spoilt and unpleasant person imaginible. Despite being asked not to spray scented shit in the house to avoid giving me a migraine, she let her 12 year old son douse himself in body spray all over the house. The house was filled with it. I've been unwell all night. My new migraine meds mean the migraine wasn't as bad as it would have been otherwise, but I still feel awful. I could write a book about how horrid the daughter is. Every time she comes, she spends a fortune filling the fridge with food and then throws most of it away. If I ask for some, she rudely refuses and throws it away instead of letting me have any.
Pegasos got back to me and said if I wait a few years to show a continued desire for assisted suicide and bring a friend along, they might consider me in the future. But I don't have any friends now and being virtually housebound, I'm unlikely to make any. Honestly I've gotten so desperate I even considered trying to find someone to marry me to become my next of kin and take me sto Switzerland but who on earth would agree to that? Maybe i should make a mutual aid post about it.
On top of everything else that's going on, I seem to have caught a cold/cough/sore throat. I want uppies
Oh no... Do take care love
Sorry to hear that. Maybe get a covid check just in case.
Thank you
I don't even know if we still can get tests here, otherwise I'd have bought one today. I'll see what I can do.
The weather is apparently bad enough that a bunch of busses got csncelled, and i thought that included mine. Turns out it didn't. Woo.
Hope you got home safe okay!
I lived.
leg pain has been pretty bad lately aggravated by the weather so i'm stuck using my cane more than i've had to in almost a year :') also having to deal with a lot of brain fog from my mental health medication and it makes me feel like i can't type a coherent sentence so there's that too. we push through i guess
::: spoiler not sure how to tag this but could be needed? a lot of self-loathing/invalidation ig ive been dealing with this issue for 9 years and i still havent mentally accepted that its going to affect my everyday life at least through the near future. i walked in to my psychiatric IOP program the other day with my cane (the first time i ever used it there, short walk from the parking lot means i dont need it 95% of the time in that building) and the looks i got from the other clients ive come to trust just made me ... embarrassed? i guess it was just jarring for people to see for the first time but i cant help but shake the fact that they think less of me now or that they think i'm doing it for attention? a couple of my ex long-term friends used to poke fun at my cane usage and call me a "grandpa" etc so that experience definitely hasn't helped idk. :::
I have a suggestion for you. Its gonna sound stupid and you're ok for telling me to fuck off.
Get a really cool cane. Like one with flames painted on it, or floral patterns carved into the handle, or something like that. You dont even need to use it more than once or twice, you can borrow it if you want and deliver it back after having tried it.
If you need a cane you need a cane, and any asshole who would judge you for that will judge you for any perceived weakness and can fuck off anyway. Anyone in any kind of care situation should be sensitive anyway.
So own it. You clearly feel shame around it, but you shouldn't need to. You haven't done anything wrong by needing a cane, and its a part of your daily wear anyway so make it something cool. And if its a cool accessory then the conversation can switch from "Oh theyre disabled" to "Check out my bitching cane", and the conversation can be about something besides your disability, or at least it can be about your disability in the context of who you are and how you express yourself.
not a stupid suggestion at all and once i have the finances i will most likely be getting my hands on one. i ran into a super cool cane a few years back at a thrift store that was wood-carved, but it was way too tall for me and i've been wanting a similar one ever since haha. a lot of my shame around my cane usage just stems from self-invalidation and feeling like i'm "not disabled/in pain enough" to justify using a mobility aid, which is something i've been trying to address and work through but i still have a long way to go. i appreciate the kind words and advice!
I haven't been too active here the past few days as I haven't been feeling great. The pins and needles/tingling spread to my face, maybe it's a migraine? No idea. One of the surgical wounds on my feet is infected and I can't get medical help. I tried to get a doctor's appointment yesterday, the receptionist said a doctor would phone me, I waited all day but they didn't. So I asked the pharmacist to prescribe me antibiotics but he said he can't do that because he's a locum and I have to wait for the regular pharmacist to come back. As I am waiting for the car repair I can't travel any further (the GP/pharmacy is about 10 houses down from me so I can get there without a car, although even that is difficult right now with my foot issues) so I am not going to the hospital for this - I don't want to sit there for 10 hours waiting to be seen anyway. So I've put an iodine patch on it and I'm hoping that will get rid of the infection. Normally I prefer not to use antibiotics for infected surgical wounds and prefer to use iodine patches instead but the iodine doesn't seem to be working quite as well this time.
The neurologist gave me a follow-up phone appointment about my migraines and has pressured me into accepting a new migraine preventative drug. The big problem with this is, it's not safe to take an acute treatment with it. So if the preventative doesn't work and I get a terrible migraine, am I supposed to just grin and bear it? And I mentioned my pins and needles, as it could be neurological, and asked for an appointment to get checked out and she said she doesn't deal with other neurological issues, she only deals with migraines! What the hell? I thought if you're a neurologist you deal with all neurological issues but apparently not. She said if I want a neurologist to check me out for this I have to ask the GP to refer me and be on a waiting list for about a year. Not to mention how difficult it is to even get a GP appointment now. It is just so difficult and exhausting trying to access medical treatment these days.
And due to the foot/leg issues my further foot surgery is going to be postponed. I don't know how long for. At least the previous surgeries got rid of most of the problem, what remains will have to be treated with topical treatments.
Oh UK, just hurry up and legalise assisted suicide already.
I'm so sorry, love
Thank you.
Can I get an extra hug? Work is still shit and I have a dentist appointment tomorrow to get a cavity filled. Also my app I'm writing doesn't work and idk why. Probably my fault for vibe coding it instead of actually writing it.
You can get as many hugs as you want
I hope the dentist appointment goes well, and the vibes in your app are good enough to work. Don't fret, it'll be alright
I'm going through it, but I'm trying my best.
I can't always be me, I hope people understand.
We do understand, and you don't have to be anything that makes you feel uncomfortable. Hang in there, we believe in you
As a fellow disabled person, transfem YouTuber Rain, the Radical Dame, is working on the clock despite getting tired usually. I just had to help her get some rest if she feels tired.
I'm back. How is everyone?
Nice to see you.
Thank you, I appreciate you
Glad you're back
Thanks, love
This month is proving even more difficult than usual. Two recent foot surgeries, now infected, the endless struggle to get even a bit of medical treatment, the non stop tingling and pins and needles, starting to go bald, the car breaking down and needing repairs, the neurologist stopping the only migraine meds that work for me because "they aren't working well enough," and the endless struggle to get assistance. Several people came through after all my reposts, eventually we managed to get enough to fix and fill the car but that used up almost all the money on that, and it's so difficult to get replies to mutual aid posts now, thanks to the most recent reply, I can get by with food for maybe a week now but after that I'll have to keep reposting and if no-one responds I'll be screwed. Apparently someone was accused of being a scam artist on mutual aid and now people are less likely to donate for fear they are being scammed?
All avenues of help are closing. My local council cut the Household Support Fund (a small amount given out to the poor twice a year) right down, it started off as £150 twice a year, then they cut it down to £100 once a year, and then they decided they were only giving it to old age pensioners. So that support is gone. I was due to receive a £300 grant from the cancer charity macmillan in November, but they decided not to give grants any more, so that lifeline is gone. There is nothing else I am eligible for, the food bank takes up to two weeks to access and gives a tiny amount of food, mostly drinks like tea, coffee and milk, which all runs out long before the next food bank appointment, how am I meant to get by on that? Mutual aid is the final lifeline, and I am immensely grateful for all the help I've received here but it's getting more difficult to get responses there too, and with prices going up drastically (by about two fifths these past few months) money just doesn't go as far. Is it just a bad time of the month, far from payday, or will I have to keep reposting every week or few days from now on? I even made my mutual aid post as helpful as possible, multiple food voucher links with various different payment methods, amazon gift card link (can get dried/tinned food off there) and even paypal (as my need for food aid right now is bigger than my worries about the DWP checking my accounts). Don't know what I can do to make it easier. That's why I'm up so late tonight, i thought if I waited long enough and kept checking my emails I might get a gift card and could go to sleep in peace but it's 1.30am now and I'll have to go to bed worrying.
On top of this, the fact that I've been almost housebound for so long is really wrecking my mood even more. I need to get out and walk around in the fresh air but due to all my foot surgeries, foot infections, and the repeated injuries in my left side thanks to the weakness caused by my stroke, I can't wear closed shoes or walk for more than a few minutes right now. Like hobble into a shop, pick up a few items and out. I want to hike. I live right by the southwest coast path, a 630 mile hiking route that goes around the entire south west coast of England. I've got a free bus pass from the council (as I'm partially sighted) and a ferry pass from before all my walking problems started, that still has about 8 free journeys left on it. If I wasn't almost crippled I could use these things to go out on day hikes and then get the bus home, get the ferry to other towns and hike all around, which is what I used to do before all these problems began. It's not much to ask, wanting to walk around outside but the universe won't even grant me that. I feel like whatever controls this world is taunting me, placing me right by a brilliant hiking area and then crippling me so i can't use it.
And everything costs money, constantly. It's hard enough getting the necessities of life, never mind anything for pleasure. I'm a huge Outlander fan and the new Outlander spin-off series is starting on amazon next month. Will I be able to watch it? No of course not because you have to pay for that! Why does life have to suck so damn much all the bloody time? Maybe I was evil in a past life and this is my karma.
I just want you to be able to go outside and forget your worries for a spell. Oh love, you did nothing to deserve this
Thank you.
I'm so sorry it's one thing after another, love. Please know you didn't do anything to 'deserve' what's been forced on you. I don't know if it makes it better or worse, but it's not your fault.
Thanks.
I'll be less active for the next few days while I attend a funeral out of town. Probably back later in the week since I'll be driving. Wishing all of you a better week, stay safe and keep lovin on one another.
My condolences, and stay safe on your trip
Sorry for your loss.
Happy "Disability Independence Day", fellow 'muricans.
35 years ago today they passed the Americans with Disabilities Act (ADA) which prohibits discrimination on the basis of disability in both private and state government sectors. Idk if it's worth any praise at this point, but at least it exists, I guess. We still have a long, long way to go to actually provide for our disabled population in this country.
::: spoiler seriously though...
:::
I make jokes and then I realise two hours later that actually it could be taken as a sex thing and my interlocutor probably did 🙃
I joined dignitas recently, and was told they can even offer free assisted suicide if someone is very poor, but they have to pay their own travel costs. So I didn't do anything about it for a while. But over the past few days I thought I can at least get the ball rolling, if I can get accepted then as soon as I can get some money I can go. Also my medical conditions seem to be deteriorating and I have been feeling worse than usual. So I decided to go ahead with the matter, only to find that the documentation they need is insane. I thought it would be a simple issue of providing copies of medical records, but no. Aside from needing a ton of medical records, past and present, they want a ridiculous amount of identity verification. I don't have a passport right now but if I got one, wouldn't that be enough? NO! On top of that they want a declaration of your identity signed by a notary, your parents' birth certificates and all kinds of other crap. My father was from Turkey, they don't even have birth certificates in Turkey. If you're unmarried you even need to swear a statutory declaration before a commisioner of oaths, that you've never been married and this apparently costs £100. You also have to provide 4 types of other ID like bank statements, utility bills etc. I can get bank statements, but bills? I pay all that included in my rent. (Or at least I do when I'm in receipt of benefits and actually paying rent.) I guess I could provide a bank statement and a letter from the DWP. I have a government-issued bus pass, maybe that would do too? Don't know what else I can get.
Now, there are several other suicide clinics in Switzerland that don't require so much documentation. However, unlike dignitas, as far as I'm aware they don't offer discounted or free suicide. I have emailed them to check and I'm waiting for a response.
But the other thing with dignitas is they are quite insistent that you bring a relative along to show their support for what you are doing. This is because when people get assisted suicide against their family's wishes, the family complain in the media and it makes dignitas look bad and turns people against legal assisted suicide. But what if you have no family? There is so much to find out about all the hoops I'd have to jump through and they are slow to respond. Why is everything always so difficult?
god that's crazy. i guess i shouldn't be surprised that there's additional requirements that stop most people from being able to use it, but sigh. Having to take a family member with you is absolutely insane.
Thank you! I felt like I'm the crazy one thinking this is nuts. They say it's because in the past people have gone to dignitas without their family's consent and their family then complains about dignitas in the press, which makes dignitas look bad. They want you to bring your family to prove to the world that they support your decision. But imagine if you needed your family's support for anything else involving your bodily autonomy, like having an abortion, a gender reassignment or even cosmetic body modification. People would rightly see it as outrageous and infantilising. But in this case it's apparently fine. And if you're British and accompany your relative to dignitas for an assisted suicide, you can theoretically get up to 14 years in prison so it's dangerous for the family members too. And I still don't know what people without living family members are meant to do, dignitas are taking ages to respond to my emails.
You shouldn't need your family's support for that. I can't imagine those people went through with that without their family's support bc they weren't actually suffering... Just that their family didn't understand or care about their suffering...
:/ it sucks so much. people who get that mad about assisted death existing for people suffering are so clearly privileged it's crazy.
I know right! All these people sitting in their ivory towers, no idea what it's like to be permanently unwell, judging something they don't understand. I think next time I will say, imagine having severe covid 24/7 plus a cracked skull and broken legs 24/7. With no chance of a cure. maybe then they'll start to understand but I doubt it.
they'll probably just say you're exaggerating
Even having help with a more dignified end turns out to belong to the privileged. I get that they want to be sure, but it just seems like added cruelty. I hope in the interim you can get your doctor's letter and your benefits come through.
Thank you. I'm still struggling to get enough to pay for the doctor's letter and print/photocopy the documents I need but someone came through with part of the money so maybe I can get the rest soon.
I think the main problem with assisted suicide is that the providers are afraid of allowing someone to die who could be saved/treated to become well again. Furthermore, I think they need their assurances that you are of clear mind when you're making that decision. A family member of any sort is probably one of the safest assurances they can get, though I think any good friend would do. Still, the birth certificates of your parents? How tf are you supposed to get all this stuff??
I didn't think it'd be easy to get but yeah, killing yourself like this isn't easy, and while I agree it's ridiculously expensive, I do think there should be a lot of hurdles to deter people from choosing death lightly. The relatives thing is beyond me, however. I hope you find a way that works out for you.
I don't think there should be a lot of hurdles, it's a matter of human freedom. People are outraged when abortion or gender reassignments are illegal or difficult to get. Imagine if you weren't allowed an abortion or gender reassignment unless your family agreed and showed their support.
Oh no, don't get me wrong, I agree with you on that one, and I also don't think the family thing should be a thing, but I also don't think you should be able to knock on their door and ask "Could you help me die?" and they just say yes. It should be easier, but not that easy. And while I do agree that gender reassignment as well as abortion need to be more easily accessible, I think there's a big difference between those two and assisted suicide. The former are about how you wanna live your life, the latter about how you wanna end it.
Please don't take this the wrong way, I'm just trying to explain why I disagree about hurdles in general, but not about these hurdles in particular. I think you deserve access to whatever you deem necessary, love, and you have suffered enough. I still believe that with proper healthcare treatment, you wouldn't have to be in this situation, but we both know it's not your fault it is this way. I hope this makes sense, and you don't feel offended by what I'm saying
I think it should be enough to prove your identity with a passport, provide some medical records as evidence of your disease and prognosis and have the two interviews with the clinic that help them decide. The excessive number of ID documents, multiple documents proving your place of residence, parents' birth certificates as well as yours, expensive sworn statements that you're not married, dragging family members along, plus years of backdated medical records (I mean, why? Your health now and in the future is what's relevant, not whether you were sick many years ago) is just excessive and makes it too difficult for many people to access.
I'm not offended, I'm just so exhausted that everything has so many hurdles to get over, especially while my health seems to be deteriorating and every little thing is an effort. I'll spend my entire life going through benefit appeals and reassessments at best, and at worst they'll end up stopping disability payments altogether. Every time i need anything I have to beg on here and usually make repeated requests. I am always fighting and struggling to access and keep my medications, and now i can't even just have an easy exit but have to go through millions of hoops to have a chance of getting to dignitas. I feel like a worn out old horse who should be sent to the knacker's yard but instead is forced to run a neverending steeplechase.
I agree completely, the medical stuff and documents should be enough to prove your case.
And yes, you deserve better, it's neither fair nor right that you have to ask for help online and otherwise. There's a system that is supposed to help you. You shouldn't be suffering like this, love. I hope the benefit appeal finally works out and you can get some rest. And I also hope you can find a way to work out the dignitas hurdles. I'm keeping my fingers crossed for you love.
Thank you. It just infuriates me that it's usually the same right-wing type people who don't want me to get disability benefits but also don't want me being able to access a peaceful end. Like, what do they want me to do? Christians are out there campaigning against assisted suicide but refused to give me a scrap of food when i begged for it. Lefties usually want to see me fed and able to choose a peaceful exit if i want.
I'm going to keep on with dignitas although it seems it will take a while, if it happens at all. Bit by bit if i can get some money here and there I can gradually try to get whatever ID documents I can, get my medical records and if it's eventually enough to get the green light from dignitas then one day maybe get enough to travel there.
Took my mental health day on Friday as prescribed by my therapist and gingerbrat. It was actually pretty nice. I did light laundry chores and made it to about halfway through the 4th(chronological) movie in the Mad Max franchise. I did work on a bit of code stuff but it was correcting typos in my business sites. Nothing too brainy. I also gave Satisfactory another attempt and I think I still hate it.
Then Saturday came and I got hit with a huge wave of depression all over again... I can't really afford to take a day off a week to try and be happy, just to turn around and be more depressed than I was before. I think a lot of it is still tied to my shitty job, my education going to waste, and me just wanting to get out of this daily work grind bullshit. I need to stop setting my worth at what my income is and I don't know how. I don't want to be like generational wealth rich or whatever but I'd just like this dumb business to take off but no one wants or needs a websites and no one wants to pay the real price for one.
I wrote another mobile app in 2 days again. It was inspired by those dumb digital business cards that use NFC to send your info to someone else's phone. This one doesn't have NFC because Android sucks and we can't have nice things. But it does have a QR code generator in it that creates one for each url you add. Think of it sort of as an Android app QR code equivalent to Linktree. But that was how I realized I was back in burnout. So, there is that.
Next stage of burnout is me getting fired.
Your mental health days sounds like a success, I'm glad you took it. As to the days after, I'm honestly not surprised. Making time for yourself when you are actually trying to accomplish anything always drags you down, as if self care was a neglect of duties. It's not, just so you know.
You need a proper break, and I agree that you need to unlearn this. A solid income isn't going to make you feel better about yourself. It does help with precarious situations and relieve some stress, but what you need (like a lot of others) is a task or activity that makes you feel useful and purposeful. It'd be nice if the job could be that activity, but it often isn't. Don't give up, but also give yourself more breathing space. You're worthy, no matter how much you earn
After three days of trying to get a GP appointment or see the pharmacist for antibiotics for my infected surgical site, finally I managed to see the pharmacist and get some. It shouldn't be this hard to access medical treatment. And of course the infection has spread in that time.
Did you get an answer on your blood test
No, the only thing she said was that the kidney function was a bit low. Also the TSH was low, but it's meant to be kept low to stop the cancer coming back, so that's acceptable. But she was a nurse and said she didn't necessarily know how to read all the blood tests. She said she would get the doctor to look at it but that doctor never replies or follows anything up. I have an endo appointment in August, I'll ask her what she thinks.
I guess its good she didn't try to diagnose you based on a blood test she didn't understand. Sometimes when places are overworked nurses will step into more and more of the doctor role until they're clearly out of their competency zone, and it sounds like they're fucked for doctor.
Yes, there used to be 4 regular doctors, but three retired recently. Now they have the one regular and a load of locums. It's chaos and awful.
I hate the vicariat in the healthcare system. Just employ people, not everyone can be a substitute.

A supermajority of the nurses at the place i usually get shifts are substitute, on temporary contracts or some employment agency workers on perenially renewed contracts, and as a result there's a huge organisational mess that they need to hire more short term workers to sort.
Sorry for the rant, I'm not trying to redirect from your issue, I just have a related issue.
What country are you in?
Denmark
Fuck :/ I'm glad you got the antibiotics and I hope they'll help, but seriously, this took way too long
Considering the state of the NHS now, I actually feel amazed I got them at all. I really thought the situation would deteriorate to the point I had to go to hospital.
That is an upside, despite everything. Please take care of yourself ❤️
You too.
Well, I've been feeling more tired than usual (a side effect of my new migraine med which I decided to take after all) but I thought I'd report on my assisted suicide plans. They're not going well. There are 6 suicide clinics in Switzerland. Two don't accept foreigners. One doesn't give discounts. One isn't accepting new members. So that leaves two - dignitas and pegasos. I'm still going through the process with dignitas but i thought I'd also try pegasos as a backup. I just heard back from them and they said given my "relatively young age," they would require additional documentation from me, including a notarised letter from family members saying they support my decision and they'd have to come with me. I don't really have any family, I mean I have some cousins who live hundreds of miles away who I haven't seen in years. They don't care about me at all, they never check to see if I'm alright or need anything. You can technically get 14 years in prison in the UK for assisting someone to commit suicide, there is no way these cousins will drop everything, abandon their kids, travel hundreds of miles, spend loads of money and risk prison to help me do this. So pegasos is off the table. That only leaves dignitas but I know they are also keen on family involvement. It doesn't look like it's going to happen for me but I'll keep trying with dignitas until i get a definite no anyway.
I'm sorry to hear that it's all been dead ends. Seems dumb to require family, who you basically don't even know anymore, to vouch for any kind of procedure. Especially when they may as well be strangers. Hope the new med turns out beneficial.
Idk. I'm having a hard time with people infodumping in that I straight up tune out and start wondering "this has no relevance to me, why on earth are they still talking"
Like I can't pretend to care about something I straight up don't give a shit about. I can't listen to a recommendation and an indepth review of a show that I haven't seen and will never see.
If I were asked, I'd talk about it politely. Like, idk.
Wish someone cared that I had a bad time, that I felt left out. I'm gonna die a third wheel. Being around people is triggering, hearing about people who have transitioned is triggering, I'm ready to run into the woods. Fuck all of this.
::: spoiler Am I figuring out neurotypicals I'm supposed to be honest but also not overshare how fucked up I am even though that is honesty, I'm supposed to want people not to care if I'm any gender when I want people to affirm my feminine side, and I'm supposed to get people to help me without realizing that they're helping me otherwise they'll say "not on your life, squirt." Or I'm supposed to ask endless questions like I'm filling out a form, I guess, to get to know them :::
::: spoiler not good, folks If it had been up to me, the right people wouldn't have left in the first place and I wouldn't have had to sit and figure out what the hell is wrong with me. I don't know if others are supposed to care. Maybe I just get therapy and transition and never tell anyone. But Hot Fuck it would be nice to have some sort of standard, or baseline, or average for what to shoot for, to start, for now.
It would be nice to have someone actively engaging with my problems because that's always what I've done for others. Checking in to see if they're making progress. Asking how they are. Maybe that's codependent and fucked up and gross and betrays boundaries. But it's what I want. Is it bad that I want some of the attention in my life to be unprompted? Am I a sinful beast for wanting the energy I have given to reciprocate in some recognizable form? Maybe I am awful for wanting that.
::: spoiler fuck Like literally I might have to get worse to get better. I just don't see a path forward. I'm too old and too lacking. Do I really have to work this hard to find my people? Nobody else has to work this hard to get someone to have a conversation with them.
I don't want to die but like there's no life so it makes you think :::
::: spoiler Kill Me I can only really deduce that something is wrong with me because nobody will validate my concerns and that it's a reflection of me in some way. I am doing something to make people feel horrible when they talk to me or read my posts and they correctly decide that I suck
Doesn't matter that I'm nonbinary or autistic, people think I suck for some other secret reason being kept from me I guess by everyone. Like I don't know what I'm supposed to be making of situations where nothing I do is actually enough to get attention.
I'll be honest, I thought someone would at least pity me. I'd accept pity under the right circumstances. I wanted mutual emotional support, but clearly nobody is ever going to want to talk to me about emotions or processing thoughts or anything like that and it was a lost cause from the beginning.
I see people every day who just connect and talk about things and have no anxiety and I want to be like that so much and I resent that everyone else learned and nobody taught me. They all know what I don't and they won't tell me. And I'm supposed to be strong. God forbid I find myself feet-up at the bottom of a creek in the mountains. I get less support because I'm suffering.
Like, I'll start speaking up, and I guarantee that it'll be a problem, and I won't give a shit because no one ever bothered to even try to help me work through this. I don't know how to justify taking blame for behavior that I perceive to be someone else's fault. Seems like the person who made me upset shouldn't have done that.
Maybe help the person you know is struggling, the person you know is going through something you went through, or something you can help with. "No, I'm gonna wait for him to have the idea himself to put down the razor. He'll talk himself out of it, I mean, he talked himself into it, could work" 🤔
I'm genuinely confused as to why people don't notice and why people don't say more. Here and irl. It doesn't matter, obviously you decided not to care. :::
::: spoiler If you feel I'm out of line, let me know and I'll delete the comment I don't want you to think we don't care. We do, about everyone here, including you. Let me maybe explain why I at least feel unable to help you in the sense of seeing your struggles and supporting you emotionally.
Your problems of being unable to connect to people are valid, and you're far from being the only one here. What I feel makes it difficult for us to reply is your rejection of others. You want someone to care, while at the same time you say you can't bring yourself to care about someone telling you how great the show is they're infodumping about. It's alright not to want to watch this particular show, but the point of forming connections with others is to appreciate what they're passionate about, and to be able to receive the same appreciation in turn for what you're passionate about. This goes beyond watching shows, naturally, and only applies if you want to form a connection with this particular person.
A lot of what you write reminds me of myself irl, and let me tell you, it's only gonna hurt you to think about yourself as having to get worse to get better. It doesn't work. You'll only get worse and worse, more resentful, spiteful, hateful even. I'm not saying you need to be all sunshine and rainbows from now on, but I really recommend being more vulnerable. The only way to form connections is to let some people see you emotionally honest. And that means trying with new people until you find someone who will be this open with you too.
It's give and take, and while I appreciate that you seem to have been hurt before, the only way this hurt will heal is if you try again with forming connections. You're not a horrible person. You're not unlovable. You're you, and you decide who you want to be. And I think you're a beautiful person to be around - here and irl. Let yourself be.
:::
::: spoiler spoiler My problem with holding space for others is actually that I've done it for so long that I guess I thought that someone would offer me the same. I'm inclined to stay quiet and listen, but I'm also burnt out from it, from listening to people so much and being asked so rarely. If someone asked me I would be so vulnerable. The problem is when I'm vulnerable people are consistently put off, but nobody will tell me how I'm supposed to phrase things in order to avoid that. I thought prompting others to ask would be better than just saying "Wow I want to die" devoid of any context. It gives other people the opportunity to help. I don't want to take someone hostage by talking about suicide or gender dysphoria and expecting them to care. That's a lot to place on others.
If this were the first time this person was telling me about the show, that's different. If this person weren't consistently talking over me and others, that's different. People ignore and talk over me when I want to infodump, and then I have your infodump and my infodump that I didn't get to say still in my head and I haven't gotten to dump anything anywhere. But it's my fault for having too much going on in my head. I'm burnt out from being thoughtful and mindful of others where it isn't reciprocated. Like if anyone would just ask. me. direct. questions. surprise surprise, I'd answer.
My perception is that I do a lot for others by being polite and not talking over them and listening to them. Other people will just talk over each other and be rude and not listen and I always try to listen as much as I can so they don't feel ignored. This same space is not held for me, and that is what I do not understand. I have always tried to be there for others.
I don't really think people want connection unless they're explicit about it. Like to me that's something that has to be stated and established. I don't want to build something with someone in some vague situationship that just ends because it's not convenient. I want it to be mutual and intentional.
I'd also argue that me saying any of this is me being vulnerable. But watch, somehow I'm doing it wrong, or doing it in the wrong time or place, or something. The goalposts keep moving. :::
::: spoiler spoiler Okay, this makes a lot more sense now with context. Yeah, naturally you're fed up with just giving and not receiving. Out of curiosity, when you're being infodumped on or people just talk and talk and talk, do you ask for their attention to what you want to talk about? And if so, how do you ask and what is their reaction?
Just being there for others, with this politeness, usually doesn't lead to forming connections. What I've realized is the more you keep giving, the less people will give back. May it be attention or time or just the same basic courtesies you give them. The narrow line here is giving but establishing firm boundaries as to how far your politeness goes, and how much "being talked at" you'll accept before you leave. People tend to show you more respect for what you want and care about if you say "I'll listen to you talk about [infodump topic], but I also wanna share what's on my mind." It's just you taking up the space you need for yourself. If you do this, people who actually respect and like you and want to form connections with you will do so. I'm only speaking out of what I learned myself over the last couple of years, and I know it's precious little. It's also really hard to do this stuff.
And you are right about people being honest about forming connections. Only thing I'd add here is that sometimes, when you meet someone new, you don't know yet if you want to like this person or not. So people need time to get to know each other (this horrible thing called small talk), and that's when this decision starts to be made. Once they're sure, which comes from actually spending time together when the vibes are right, they will be more straightforward. It's a game of patience and a lot of rejection, and I'm not sure there even is a surefire way to find the mutual and intentional connection with others.
Hope this helps you a little bit and doesn't come off as a lecture. Let me know if I'm getting you wrong.
:::
I just finished a course of antibiotics for my latest foot infection 2 days ago. It was seeming OK. Now the pain is back, I think it's infected again already and I don't want any more antibiotics, the last ones made me nauseated and gave me constant diarrhoea.
And I'm still struggling with my thyroxine issues, I'm so tired it's a struggle to stay awake or prepare food or anything. I was hoping someone would send me a justeat gift card so i could just order preprepared food until I have a bit more energy but my request is going unanswered. I guess I can't complain, there are a lot of people worse off than me needing help. It's such a sick world we live in where the most desperate people in the world have to compete with each other for food. It might as well be the Hunger Games at this point.
It's ok to vent, you have a safe space here. There's no use pretending everything is okay, but at least we can share our thoughts and feelings in solidarity for one another. Sorry to hear your infection might still be around and your fatigue hasn't let up. Sending hugs, love.
Thanks.
a few days ago I was going to discuss with someone about my death, for a few moments I genuinely believed I died a long time ago and I was going to discuss it.
Sorry to hear that. Do you have Cotard's syndrome?
no, I don't want to clarify what disorder(s) I have, just needed to vent.
I'm so exhausted because of my thyroxine issues right now. It's making it hard to get on and deal with my benefit appeal and the dignitas stuff, but I'm managing to do at least a little something towards them each day like send an email or fill out a form. other than that I am so tired I keep falling asleep during the day. I'm still trying to get the money together to pay for the doctor's note but apparently the only GP that knows me personally there is on holiday for 2 weeks so I guess there's no point rushing right now anyway. I feel like if I do at least one thing towards these two issues each day then at least some progress will get made, however slowly. And i'm going to need to pay for ID documents but have no money for that either. It's all so overwhelming the only thing I can do is one small thing each day.
For once though, one tiny good thing happened. Recently the neurologist said she wasn't going to prescribe my migraine tablet, rimegapant, any more because my migraine diary shows it isn't working well enough to justify the expense. (Apparently a pack of 8 tablets costs the NHS £125 and I've been getting 2 packs a month. The pharmacist scolded me a few months ago for costing the NHS so much money.) She prescribed a new tablet in it's place, but that was only delivered today so i haven't tried it yet. I've been very, very worried about managing without the rimegapant. Last week I quickly put in a repeat prescription request for my two boxes of rimegapant, hoping I'd be able to get it dispensed before the neurologist's letter arrives telling them not to dispense it any more. Today I received it, and when I opened the prescription bag, not only did it contain rimegapant but weirdly it contained 7 boxes instead of 2. A three and a half month supply instead of a 1 month supply. I can only assume the pharmacist made a mistake but I am keeping them. A small victory at last.
Damn comrade that sounds so exhausting. And to think that the NHS was world renowned at one point lol. Well I guess us Americans will have a new horrific round of medical austerity to put up with soon

My understanding is Americans have been lobbying British politicians to gradually chip away at and dismantle the NHS. They want us to have private healthcare so they can sell healthcare to us. Those of us who rely on the NHS are just collateral damage for America to make bank.
Oh wow I didn't know that. I was actually referring to the new Medicaid cuts coming soon!
Punch the pharmacist square in the mouth. What the hell. I would have flipped my lid had that happened in m general vicinity. The police would have had to drag me away i would have screamed that much in their face.
That is a small step from calling you a useless eater to your face.
I already know 99% of the British population considers me a useless eater. Why they won't just put me out of my misery I do not know.
That is good you got extra meds! Are the new ones she prescribed very similar or no? Using cost as a justification for that is so stupidly evil.
And honestly, doing just one little thing a day is more than enough. Hopefully those little things will build up and you'll be able to see something come from it without having to sacrifice too much. You deserve lots of rest and I hope you can find some relief soon. Has the tingling subsided at all?
The new ones are a preventative and not used to get rid of a migraine when it happens. I don't think I'm going to try them as they have a lot of side effects and I can't use the rimegapant with them (they aren't safe to mix apparently), I'll have no acute treatment for when a migraine happens. The tingling comes and goes. Right now I'm just mostly exhausted from the lowered thyroid dose. I'm struggling to stay awake or do anything.
I kept screaming while sleeping last night, it was comprehensible.
Are you my neighbhour? And if so, why the screaming? And if not, why the screaming?
this is not the place for humor
Okay but my neighbhour did scream all night and I am interested in knowing why you would be screaming.
I prefer not to clarify
Fair enough
Insight into non-anglo European med school for those interested: When you are learning anatomy you always have to use the Latin names, it is considered an error to use any other language name... Except for the articulatio zygapophysiales because no one can spell it. That is literally a rule.
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