A thing that people not yet disabled don't get, is that being disabled is a full time job. Endless paperwork and deadlines and bureaucratic minutia to process and navigate and stress over, etc
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And not to mention the three different types of physical therapy I have to do almost every day or I get worse.
And unless you’re somehow lucky enough to get on disability you gotta work a job too! All with a tiny fraction of the energy you had before you got sick
Its so depressing that its this bad without even touching on the strain of actually having a disability. Its a full time job just to deal with the means testing our societies puts up to prevent people from getting the help they need before you even consider the actual work of taking care of yourself
This endless flood of work, humiliating and dehumanizing work, enacts a toll. You are forced to become less of yourself: there is just not enough time or energy to devote to everything else.
Two fucking YEARS of constantly wrestling with the Social Security Disability system at a time when I had like ten seconds of executive function per day, all so I could get paid roughly what I made as an unlicensed first-year teacher at the lowest-paying private high school in Columbia, SC in 1985
I find the amount of hoops you have to jump through to get help with ADHD are so ridiculous given ADHD an executive function disorder & jumping through hoops can be exceedingly difficult. It shows that even the people who are supposed to help haven’t really thought things through.
It was very refreshing, when recently at my uni, all I had to do to get help for ADHD, was fill out a form saying I have a neurological disorder & provide a letter from my doctor. The uni did the rest.
I just took on harassing HUD on behalf of my partner because the local housing manager isn't enforcing rules against smoking and weed indoors and she's getting daily migraines from our neighbors hotboxing. And despite feeling very strongly about the issue, I had to snooze the reminder today.
every damn word of this. it took 6 months to even get an idea of a diagnosis and every step is so arduous. it's definitely a contributing factor to my recent awful breakup. I'm still very much figuring out how to live
I'm sorry it took so long for a diagnosis. Living with it is extremely difficult. Get a therapist if you can. It will help with the hopelessness that you may feel.
I feel that. Half spent half my life chasing an answer and at this point I've had so many blood tests that my left elbow has needle scars. Apparently that's not meant to happen but idk. The phlebotomists can see them so it's not in my head 🥴
I mentioned it to one of the phlebotomists and she was like "oh the needles don't scar - they're quite small!" then she saw and was so confused 🤭 Love to be chronically ill
My dad has terminal glioblastoma brain tumors & we filed SSI in April & havent heard shit. He even has good insurance but we still got chucked out of the hospital with no wheelchair even tho he cant walk anymore. I've been chasing medical equipment for 4 fucking weeks without success.
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And unless you’re somehow lucky enough to get on disability you gotta work a job too! All with a tiny fraction of the energy you had before you got sick
Hours, weeks, months spent processing paperwork and making phone calls, waiting. Endless appointments and deadlines.
It may be evil, degrading, dehumanizing, and destructive to the moral fabric of our society, but it’s also expensive and unnecessary.
Everything will take far, far longer and with more frustration than you expected.
You will spend 6 months at a time navigating a time-consuming process at a time, leaving only heaps of paperwork to show for it.
When it happens, it will be when you have to decide between doing the dishes or taking a shower.
Tomorrow maybe I can deal with my own SSI appeal.
Maybe.
It took 6 months for her to get on Medicaid to pay for the first round of chemo.
And that was WITH doctors, nurses, and staff helping her. My stepdad was also doing the paperwork, but he, a fucking genius, was lost doing it.
Smartest man I knew.