Posts tagged chronic illness
I think I’m feeling grim lately over having had to explain to someone recently how bad it is when you need to rely on systems like disability and snap and so on for survival. In my experience the people directly interfacing with the public in these roles are…not good at that. They are pointedly unkind. They have missed no opportunity to insult me for having a university degree and being disabled. It is degrading and I’m pretty sure it’s working as intended. If I had an option I would walk away, but I can’t, because I need to eat and I need to live. But I’m sure plenty of people who need the help do walk away. And I wonder what happens to them.
It’s like the complex, sometimes award-winning, life changing things I’ve done and made and accomplished in my life mean nothing. It’s not enough to sustain a life. My education means nothing. Any contributions I may have made to society do not matter anymore, because I’m poor and disabled. And that’s the system. It is this way because someone wanted it to be this way. Someone calculated how to exact cruelty on a soul-crushed population under the guise of “preventing fraud” or some utter bullshit and here we are.
I am tired all the time and it takes so much effort just to get a basic amount of (inadequate) rest. I am tired of living with the background noise of “ope, snap’s turned off again,” a day before grocery shopping, again and again. We got it back but once again it’s a case where someone literally did not click a button two months ago and it took three or four phone calls to get here. I’m tired. I’m tired. I want to live in a house that’s not full of rats and mold and leaks. They just didn’t click a button. There’s no consequences.
I feel like I used to be a person and I don’t know what I am anymore. Not in a “tying my worth to my work” way necessarily, but even the things I’m proudest of don’t count for anything in the grand scheme. And it hurts.
Say it with me! Wheelchairs aren’t sad! Mobility aids aren’t sad! Mobility aids are instruments of freedom!
I can’t be the only one who experiences this, but I am and I feel ridiculous. I am burnt the heck out, trying to solve what feel like unsolvable problems, and in my mind I just keep screaming “I need an adult.” Despite, you know, being one.
Like, I have a therapist who can help with a certain set of issues. I have medical professionals who can help with another certain set of issues. Outside of that, I don’t have anyone with life experience similar to my situation who can help.
I’ve spent most of this year trying to figure out how to get us housed somewhere we can afford (lol) and ideally not sharing walls with other people (double lol) because the stress and anxiety of it exacerbates my existing health issues in a very bad way. I’ve researched and dug and written letters and every nonprofit organization, government, charity, religious, and otherwise, would have me believe there is just literally nothing to help two disabled adults live somewhere independently. There are so many restrictions on saving, not that we have much to start with. I can’t run a gofundme without losing what disability support I do have. It is a maddening conundrum.
This needs to happen, mainly for my health. The house we are in (not ours, it’s very complicated) is not healthy for a lot of reasons (mold, rats, etc.) and other social stressful reasons. I do not sleep well here. My belongings have been destroyed by rats. There is water leaking into the living room from the unmaintained roof through a moldy hole in the ceiling. I do not get proper rest because I can’t control the temperature, I can’t be comfortable, I can’t not be in a constant state of hyper-alertness. It is awful. I am pretty sure I would be in less than constant pain if I were able to actually relax and rest. But at this rate things just keep getting worse for me, a little at a time and despite my best efforts I am not doing great.
I am absolutely burnt in trying to solve this problem. I am in pain all the time. I am out of ideas. I am terrified of being kicked out constantly. There’s just…no help. I know it’s just how it is these days but it really does feel like the world wants you to fail and end up on the street and die if you’re disabled. And it is very hard not to think about this an awful lot.
It really sucks trying to exist within capitalism while disabled.
There are a few different options for saving up for getting a house. I'll try to remember to look them up.
Look up ABLE accounts.
They require the onset of your disability to have been before you were 26 (stupid rule that will change to 46 Jan 2026)
You should be eligible if you live in the USA.
There are a bunch of rules and it seems like different states have their own websites for them.
For using GoFundMe you may be able to have a trusted friend run a GoFundMe and deposit the amount in the able account, but I'm not 100% on the rules.
Hopefully knowing about Able accounts will be helpful to you.
I do have an ABLE account so far! That much has been helpful. There’s just so many tricky rules around everything, it’s wild.
Good point on the gofundme friend idea, I’ll have to think if I have anyone who could do that for me.
Thank you!! I hope this helps other folks too.
I can’t be the only one who experiences this, but I am and I feel ridiculous. I am burnt the heck out, trying to solve what feel like unsolvable problems, and in my mind I just keep screaming “I need an adult.” Despite, you know, being one.
Like, I have a therapist who can help with a certain set of issues. I have medical professionals who can help with another certain set of issues. Outside of that, I don’t have anyone with life experience similar to my situation who can help.
I’ve spent most of this year trying to figure out how to get us housed somewhere we can afford (lol) and ideally not sharing walls with other people (double lol) because the stress and anxiety of it exacerbates my existing health issues in a very bad way. I’ve researched and dug and written letters and every nonprofit organization, government, charity, religious, and otherwise, would have me believe there is just literally nothing to help two disabled adults live somewhere independently. There are so many restrictions on saving, not that we have much to start with. I can’t run a gofundme without losing what disability support I do have. It is a maddening conundrum.
This needs to happen, mainly for my health. The house we are in (not ours, it’s very complicated) is not healthy for a lot of reasons (mold, rats, etc.) and other social stressful reasons. I do not sleep well here. My belongings have been destroyed by rats. There is water leaking into the living room from the unmaintained roof through a moldy hole in the ceiling. I do not get proper rest because I can’t control the temperature, I can’t be comfortable, I can’t not be in a constant state of hyper-alertness. It is awful. I am pretty sure I would be in less than constant pain if I were able to actually relax and rest. But at this rate things just keep getting worse for me, a little at a time and despite my best efforts I am not doing great.
I am absolutely burnt in trying to solve this problem. I am in pain all the time. I am out of ideas. I am terrified of being kicked out constantly. There’s just…no help. I know it’s just how it is these days but it really does feel like the world wants you to fail and end up on the street and die if you’re disabled. And it is very hard not to think about this an awful lot.
there should be a such thing as a medical detective. you should be able to hire a doctor to figure out what the fuck is going on with you come hell or high water by consulting whatever specialists they can get their hands on, connecting your constellation of symptoms, etc, instead of 10000 different doctors for every distinct bone in ur body that all just kinda go "dang that sucks idk" when you present with more than one fucking symptom
I live this.
@chronicillnesshumor-deactivated
ALTIt was another Appointment Day which always feels like a crawl through the hell that the past several years have been as I mentally note all the things that are wrong with me or that everyone looks at and shrugs over.
As a result it is barely 9 pm and I am exhausted. My body is Done. I am so upset. My mind is super awake and I’ve been full of ideas and I do not have an ounce of energy to do anything about them.
Like I know dissociation is a thing, but over the course of this evening I’ve just literally felt like a ghost piloting a very broken meat robot. I wish I could just put it down for maintenance and go off to haunt somewhere else as a separate entity. Because I sure feel like two complete objects/concepts right now.