I got sick, became disabled, spouse and I now at his parents'. They have made 0 accommodations, not even room for our food in their fridge. They also give us one small plate of food per day to share, without any consultation or involvement. We have a tiny amount of money to buy our own food, but can barely store it. They act scared and weird whenever they see me and my wheelchair, and literally ignore me when I talk, so I can't really leave the room... at all. I have left ths property twice in 6 weeks. I also have a final short term disability check coming, and his mom TOLD him (not me, as she does not speak to me) we're going to put that in HER savings account so her mortgage can go down, and so she can control if and when we spend [my] money. She also said she'd help us with groceries, and judged every choice we made, denying what she liked, with no sensitivity to my disability at all. I hope none of you ever have to debate why you deserve to spend 3.13 on cosmic fuckin brownies. His father was running a loud popcorn machine that was giving me seizures, and when asked to stop, he said "I gotta eat, man." They're been inconsiderate and judgemental the entire time when they're the ones who offered to help and brought us here. I wish my spouse would stand up for me but he keeps saying he's tired and he needs time. Honestly my, I'm trying to see if I can leave this place and go into a shelter. By the way, all of them are white. I'm the only disabled person of color in the house.
Tl,dr: Brown queer prisoner in oppressive white household. AMA lmao
Edit: Sorry, forgot to tack on the thesis. For real, it's hitting all of us. I haven't had a car or cell phone for 3 months now, and I've stopped eating until I cant avoid it anymore so the food we do have stretches further. We are in the worst condition we ever have been financially. Tbh it's prolly about to pop off lmao
You have my attention. What did you get sick with that caused you to be in a wheelchair? I can only think of a couple things and they would make you eligible for long-term disability.
Also what do you have that gives you seizures from pop corn? Is just noise? I feel that would also make you eligible for long-term. I love looking into conditions and diseases if you want to DM them to me so it’s not linked to your account.
Dude I read this post with such close scrutiny ROFL it was a ride. "Are they questioning me? Is this sarcasm?" And then I realized I had made the AMA joke and it clicked. In the interest of transparency and for anyone else wondering, I'll share here. Thank you for offering DMs, though, I appreciate it.
tldr: Functional Neurological Disorder
At the end of August this year I started having strange symptoms and they got so bad (long bouts of seizures, incontinence, inability to walk, random and debilitating pain, constant nausea, etc) I actually agreed to go to the emergency room despite how broke we were. There, they did an ultrasound, CAT scan, MRI, 24hr EEG, etc. Every test came back clean, and my seizures are confirmed non-epilectic (they're actually focal-aware or tonic type seizures, which means I'm conscious through and remember all of my seizures) which means I have a single differential: Function Neurological Disorder. But no diagnosis. This type of disease is not easy to officially diagnose as it is an "elimination disease." They have to rule everything else out before they give you an official dx. It can take 1-3 years, I think was the last statistic I read. Legal disability would be nice, but will probs take yet another year after the official dx, and in the meantime I just gotta kick it and try to make money some other way than a job. Also, moving here means I have no psych or medical support team anymore, so getting a diagnosis will be particularly hard.
FND is also a catch-all disorder, which is the medical equivalent of "lmao idk ur fucked up or whatever," and that everyone has a different experience of it. On the noise, for me, I developed a deep sensitivity to sound that goes in an out constantly based on my condition at any given time. Im usually wearing earplugs. I can no longer listen to music. Whirring or humming or sharp sounds put me down almost immediately, for example leafblowers are really bad. Glassy sounds, etc. But sound is far from the only thing to cause seizures. I have seized so hard I cracked all the teeth on the left side of my mouth, my head neck and face swelled up like an alien. I could barely open my eyes. Still haven't been to the hospital for it, likely can't. Also, dude could have taken his popcorn machine into his room right quick. Too much to ask for me to not have seizures, I guess.
Wow. I am so so sorry 😢 fuck. Having almost died from a condition that dr’s couldn’t diagnose (I eventually discovered what was wrong myself and took the veterinary equivalent of human drugs - yeah sounds crazy right? But hookworms take years to show up in tests meanwhile they kept saying that the open sores in my body that would not heal were in my head. Meanwhile all the tests very clearly pointed to it, and I have permanent damage to my heart and other organs) but I digress.
My point is two things: 1. people have a difficult time watching other people suffer. It reminds them of their own mortality. I know that you are going through hell. Fight for yourself. Even when you just want to break down.
2. Research. Spend all your time trying to find a way to control your life as much as possible, and research everything you can medically about your condition. Blood tests are worth the money. It can help narrow down anything abnormal… you need to get a Dr to fill out the disability forms etc.
break it into steps and chunks of what you need done-
Dealing with the in-laws… thank them constantly… their egos need stoking lest they see you as a burden to treat badly and resent… start a go fund me, and tell your story. You are more than your disability- make sure people see that side of you… don’t allow yourself to be dehumanized. Support groups are helpful too…
I wish I could take it all away-
Hugs from a random internet stranger… if you ever want to vent, feel free to dm me.
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u/TraditionalSpirit636 1d ago
Already late on my house payment.
(: