Frustrated about my situation, disability and work

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Jun 1, 2022
In the first half of this year I was redoubling my efforts to get on disability. I wanted more records, more concrete proof, and read some advice for people with more visible conditions and mistakenly took it to heart: get a functional capacity test. they measured how much i could move around and handle weight and repetitive tasks, though really none of what they measured ever took it to the level a job actually would... but either way, most everything was marked down normal. I can stand, I can walk around, I can carry 10 lbs for a minute. The only thing that stood out was a lack of endurance. They referred me to physical therapy for that - the whole One Month my insurance would allow - and it was a good experience, but it just kind of felt like I was trying to drain the ocean with a bucket, and the only changes that happened was that I was getting better at the futile attempt.

but anyways. I was then alerted that I needed to renew my food stamps. they'd recently changed it so you had to get a doctor to sign off on work exemption every year. i sent the form to my doctor, she took her sweet goddamn time, eventually brought it out to me at a general physical appointment i had months later. it had the functional capacity test's results stapled to the back. "can work with restrictions" was marked. under "designate restrictions", she just wrote "refer to attachment". the attachment that said I had no physical restrictions. She said something about how she "wants to be honest" and "won't lie" and gave me the form. I sent it in because I needed food. They send me to work.

It was two days a week, four hour shifts. They always had more workers than they needed so there was a lot of downtime. It was doable and everyone there said I was a really good worker. it only "paid" $80/month for transportation (and bussing did take a third of that), but otherwise it was fine. but I barely remember any of it. It's four months of nothing. At work I was shutting everything off and the rest of the time I was living it all instead of recovering. I thought it would get easier. Everyone's always telling me I'd be fine if I just tried, so I tried. i tried really hard and it just got me to the point where i wasn't aware of the days, i missed all my medical appointments, i was smoking weed every other day just for the pain, and i kept waking up in a state of stress and rushing to get ready to get to an appointment only to realize I didn't have anything within weeks. I couldn't relax, I couldn't think, I was constantly afraid and trying to ignore everything because if I let it in it would be too much.

I was also working with a state-sponsored job agent (I'm apparently only disabled enough for Job Help, not food stamps or disability) and lined up a really promising job at a local zoo. They had 4 hour shifts available, so I thought it wouldn't be much worse than what I was already doing, and it would actually be paying me. In my last week before starting the job at the zoo, they put out the first schedule I was on, and they had me scheduled for 8 hours, 3 days in a row. and at this point I was like "..... I guess I can try it anyway..." and my job agent told me " know that'll be too much for you. disclose your disability and ask for reasonable accommodation in the form of fewer hours". so i did, i messaged the scheduler essentially that. On my last day at the food-stamps-assigned-job I'm getting ready to head in and I get a call from the zoo's HR department saying "open availability was a requirement of the job" and telling me I'm fired. I was planning on taking a break from working if the zoo job didn't work out anyway (but I expected that to be... a little later...) so I let my last day still be my last day. but i was trying not to cry all through it.

(my roommates work extra during the holidays, and were fine with covering me through a month or so of no stamps. I'm very lucky for that. I wouldn't be able to take a break at all otherwise.)

I vented about the whole zoo thing to some friends and they said that's probably a violation of the equal employment opportunity laws and I should send a report or something. i think oh, yeah! there are protections against just getting fired for asking for reasonable accommodation! and I'm going to send a report. The report is not finalized and doesn't do anything until you have a scheduled phone interview. There are no open available dates for a scheduled phone interview, all the way out to six months from now. The time limit for submitting a report is six months. .... and that's it. there's not actually protections against getting fired for asking for reasonable accommodation.

It really feels like I'm just at the whim of whoever has a little more power than me. America acts like it has avenues for care and justice but they've all been brick walls. At least when I went back to my doctor after months of working, obviously doing terribly, she rethought her decision and might be reinstating my work exemption... maybe, maybe, maybe, maybe... but good god, the amount of times medical professionals have been like "well I volunteer with the ACTUALLY DISABLED ((the FREAKS without LIMBS)), and i see YOU so YOUNG AND HEALTHY i just don't want you NOT WORKING!" and i just have to nod and smile because what am I to them, I'm just some idiot who doesn't want to work, i just have to take whatever punches they throw at me and apologize for existing and claiming to be in pain. i just have to keep hoping the universe will stop telling me NO and i'll maybe, eventually, hopefully, maybe maybe maybe maybe, be able to eke out a meager and pathetic existence WITHOUT grinding my body into dust and an early grave, by the grace of the gods - the gods being literally anyone with a degree.

I keep looking into disability and healthcare policies in other countries. and then I look at immigration policies and see they won't let you in unless you work. because even the best countries only really care about their own people. I was born somewhere cruel, so I belong to it. like rebranded, larger scale feudalism. I'm stuck in this place where everyone thinks all I want to do is sit around with my thumb up my ass and throw me into the meat grinder because they ~Believe in Me~ and equate participation in capitalism with moral rightness. I want to slam my head against a brick wall. I want to spin a cocoon and liquefy into something different. I want to crawl into a hole and never come out. I have literally no power over anything, and having hope in any system or my ability to uphold it has only pushed me into enough suffering to burn months of memory.

I'm an artist... I make digital art, I crochet, knit, paint, draw, write, build, create... When I have at least some control over my own time, routine, and pain management, I'm almost always doing something... but it's not for money, so it's not good enough. it's not warped into the niche of Commercial Revenue, so it doesn't count. (and isn't it widely known enough to be a JOKE, how hard it is to make a living off art?...) God forbid art be for its own sake. God forbid anyone my age with no missing limbs not be flipping burgers instead.

Even if I didn't do anything, even if I just wanted to sit around all day with my thumb in my ass, I still deserve to eat, don't i? people shouldn't be measured by their Production ... The Point of a Society, of a Government, should be to allow people to just Exist, even if they can't or don't do anything else. but that's such a Wild and Crazy belief! because it doesn't make money.

I don't have a conclusion to this. Thanks if you read it all. I'm really tired.
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@jasper_b , I am sorry to hear you are going through all of this. I don't know if it helps or not, but your story is not unique and you have a lot of dissatisfied company in your struggles. Maybe some of us here will be able to offer support and, perhaps, helpful suggestions.

Disability payment is notoriously hard to get in the USA, but most other countries, except for those that have true national health care, are not better.
And, as you have discovered, immigration to another country unless you have that citizenship, is not easy.

The catch 22 that you are experiencing is common, and is the result (my opinion) of a completely broken health care system. Rules that contradict each other, red tape, backlogs, it goes on and on. There's very little you can do about it.

I think it might be worth your while to combine your efforts to get some form of disability with a concentrated search for work that you actually can do on a regular basis. May jobs can be done from home these days, and many of them, while not being well paying, at least offer you the chance to work when you can and take time off when needed. These are not fascinating jobs, but a job is a job and if you don't have to do physical work and can stay home, getting into different positions and drinking tea or whatever helps you, it would help.

Another thing you can do is, if you do some research and find work that you wouldn't mind doing and it's from home and pays enough but requires training, you can start taking community college or trade classes (online, maybe).

My thought is that maybe you will simply have to take matters into your own hands the same as we need to do in terms of dealing with our fibromyalgia. Sure, it might take a year or even 2 to get the training, doing it from home or taking one or two classes a week soo you can manage it, but my feeling is always this: The time will go by anyway. At the end of that time you can either be in the same situation you are in now or you could have a certificate that allows you to support yourself reasonably from home and live a decent life despite your disability.

Maybe these ideas don't work for you and someone else will have one that does. Hang in there. A solution is out there.
@sunkacola I've always shied away from at-home work, mostly because I had a year of online schooling in the 7th grade that was pretty much a freefall nosedive, but I'm an adult now... I'll look into it. i'm not super confident i'll ever have the cash for any courses, but that's another option for the future. thank you for the support and advice
You are most welcome.
If the courses cost too much, I'd look into what your area has in the way of helping people to learn a trade. For instance, Goodwill Industries have a job program and also help people find ways to finance training if they are disabled in some way. You could even talk to the school if it is local and ask them if they have any such program.

I would encourage you not to think that the dollar number in the brochure or online is flat-out non-negotiable, because sometimes it is. Financial aid, etc. You could also find whatever organization(s) in your area help disabled people and talk to them. Some of them have money available to help people get training so they can become a vital part of the workforce, which is in everyone's best interests..

One thing I learned in my life, being a person who usually didn't make or have much money, is that it never hurts to ask. And then ask someone else. Repeat. I would state clearly and succinctly what I needed and why and ask for help. Just the facts, friendly, no emotion. If someone said no I'd ask them if they had a suggestion of someone else I could try. And I would keep going until I got what I needed or at least partially what I needed (usually) or ran completely out of options (very rarely).

It takes time and energy to do this, and that's hard for someone who is suffering from fibromyalgia. But it doesn't all have to be done in one day or even one week. Just keep looking and asking and something will open up for you.

for sure, the online work available these days is much wider and is different from what it was when you were a child, even if that was less than 20 years ago.
it is different from 10 years ago.. or even 5 yrs ago...
the last couple of years have really changed a LOT of things.

I completely agree with the above... Ask! the worst that can happen is you get told no, and if that happens, ask for other potential resources.
Ask the school, social workers, if you go to church, ask there, ask everywhere you can possibly think of, and then ask them for suggestions if that one cant help you. Local food pantries can often have information on resources you could possibly tap into - so even the most unlikely source could prove helpful in some way. Everyone at some point in their life needs a little help - even those that you might think have it all - dont be afraid to ask for it when you need it.

Growing up, we didnt have much, and as I got older, that really did not change much. I have even been homeless and no clue where my next meal was going to come from at one point in my life - but I did not give up. You should not give up either.
Hello Jasper_B:
Please allow me to share some suggestions with you.
When I was at the end of my rope, and an empty bank account, I finally was forced to follow my doctors advice and the advice of my physical therapist, I had to leave the work force. I worked for a company that shared the cost of Disability Insurance with me and I had to apply for benefits. I had emptied my bank account first seeing almost every specialty on a local state level, then traveling all over the country to see experts who were able to offer nothing in the way of a cure. But I did receive a confirmation of my Fibro Diagnosis. It turned out that the disability insurance was almost a full time job in itself. They required unbelievable amounts of paperwork and forms and filings that took every bit of what small amounts of energy I had left. The 90 day waiting period turned into 9 months before I saw a penny. Then, they required that I apply for Social Security Disability to receive benefits. Of course I was turned down by social security not once but twice. Then I was provided a lawyer by the insurance company. This made all the difference in the world. Even though I still had to do most of the work, and the lawyer just appeared in the court hearing, the judge absolutely treated the case differently after a lawyer was involved. It is just like medicine, it is a boys club and if you are not a part of it, you must find someone who is a part of it to represent you. Only then will you get the help you deserve. No, you shouldn't have to do that, but it is just the way it is. This is my suggestion and I hope you find it beneficial. Best of luck to you. I am so sorry you are experiencing this, but honestly, most of us here went through the same things. Unfortunately, there are what seems like an endless road of hurdles, but there is a light at the end of a very long tunnel. Wishing you well.
thank you @FarmerJoe . i'm definitely going to try to track down a lawyer once my current application goes to appeal. hopefully itll work out okay - i know people who can't find lawyers to take on their case, because they're convinced it's not solid enough. but im going to try my best. with time to rest
thank you @FarmerJoe . i'm definitely going to try to track down a lawyer once my current application goes to appeal. hopefully itll work out okay - i know people who can't find lawyers to take on their case, because they're convinced it's not solid enough. but im going to try my best. with time to rest

I had a very different experience with applying for SSD than FarmerJoe had... I also consider myself to be fairly lucky in that respect.
I applied for SSD on Nov 30, 2021 - the process ended up taking 10 months for my determination, and I fully expected to be denied the first time through, but I was not. I was approved in Sept this year.
the case worker at my local Social Security office was great, and helped me get through the application process.
Every situation is different, so it is very hard to predict what will happen. I hope that things go in your favor.
@cookiebaker that's amazing! I haven't known anyone to get in first try. this'll be my third
yeah, i was very surprised myself... kind of shocked actually.
Even a friend of mine that had type 1 diabetes and heart problems did not get it on the first round... so yeah.. pretty unusual, but it does happen
I wish you luck and hope you can get things sorted out soon.
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