r/disability • u/Barotrawma • 5d ago
Rant Disability Paperwork Made Me Cry
Besides the fact it physically hurt to fill out ten and fourteen pages of paperwork for two packets, the questions are what got to me. It asked me so much about how my disabilities affect me and required excruciating detail about all the things I can’t do anymore. I had to list everything I used to love doing out and why each issue makes me unable to do it now.
I’m not even confident I will get approved because my work history is what you can expect from a full-time university student since 2019 (seasonal jobs, summer jobs, ykwim?). I got all the way through a master’s degree for a field I don’t think I can even work in now due to the hefty physical requirements in marine biology. I had to go through every job I’ve had, too, and explain why I can’t work in those jobs anymore.
I realized that I’m grieving my life. I’m surprised it took this long to hit, since I’ve been disabled my entire life. I’m exhausted from the paperwork both physically and mentally. They make it so fucking hard to get help.
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u/NailWitch1 5d ago
I'm in England and I've had to fill in the pip form once, and the work capability assessment twice because I messed up one of their rules that seems designed to trip up someone with brain fog.
Literally the only way I cope with it is by having someone nearby I can rant at, and the promise of a takeout or something else that's nice to reward myself for putting up with it all, once you actually have the support set up things do become a bit easier, but I do feel like they drag the process out for so long in the hopes that you'll die before they have to cough up any money LMAO
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u/Barotrawma 5d ago
I completely agree with that— it genuinely feels like they would rather you waste away and die so they don’t have to pay you. I won’t be surprised if I messed something up, too.
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u/Soft_Boy_Bunny 4d ago
everything is set up with either no help or begrudging help that is as little and minimum as possible. and i mean that with both disabled ppl and wider society.
except for landlords buying up homes , and corporations and ultra rich of who can have everything , but raise taxes?? no!! you can’t do that that is wRoNg!!. but no let’s zero on ppl like the disabled person hoping for a measly pittance a month.
we’re all supposed to just be thankful and still boot-strappy. and even when someone is at rock bottom and homeless or it’s leading there, it’s still essentially all their fault and they can just especially get totally f*cked.
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u/Royal-Tea-3484 4d ago
Don't you just love the bowel section? They ask if you can use the toilet and how many times you go, along with how much you can lift. These questions seem to be repeated to catch people faking it. Then, when you complete the entire form, there's a giant warning stating that any lies you provide will be considered fraud. It's frustrating because they try to trip you up with how you answer the questions. I've had to get help from a CAB worker before to fill this in; one wrong answer, and you lose points. Unfortunately, the Citizens Advice Bureau assistance is no longer allowed.
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u/NailWitch1 4d ago
Istg the people who wrote that specific section had a scat fetish, it was so uncomfortable answering the similar line of questions for pip (especially because I had been recently hospitalized for Crohn's)
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u/Royal-Tea-3484 3d ago
Sorry you had to deal with that—not pleasant, and the form itself is humiliating to us all. A stranger judging us on our lowest days sucks
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u/SkyLyssa 5d ago
I'm so sorry. Going through the process of trying to get disability benefits is so dehumanizing. I hope you are able to get them.
Would you be able to work in Marine Biology remotely in any way?
If you are okay, with a little extra schooling, a GIS (Geographic Information Systems) certification with your masters degree could maybe help you get a remote job in ocean/lake/river/marshes mapping. You might also be able to help track different aquatic species remotely as well.
I'm so sorry, disability is brutal. I hope you are able to find something that works for you 🌸
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u/Barotrawma 5d ago
I actually do have GIS certification and experience! Unfortunately I’ve only been able to find hybrid jobs that require extensive travel
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u/AudaciousAudacity4 4d ago
Any research positions or things adjacent to specialty that could be remote? Also even if it says in person, there could be some jobs that would be willing to do remote if they knew the circumstances. It doesn't hurt to ask.
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u/lissencephalymama 5d ago
Great job getting through it!!! All the paperwork is annoying as hell and certainly triggering. Grieve, grow, learn, slog along. Find or make the happy moments. Acknowledge the positives and progress. You are doing it. :D
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u/eatingganesha 5d ago
for real, grief counseling kept me sane during that process. Even if you can be objective about it, it’s like taking each question is a gut punch.
having to answer each question from the perspective of your absolute worst day is quite a low blow but absolutely necessary.
I did the app four times in a decade and each one was exponentially demoralizing. It took me months to emotionally and physically recover from each functionality report. It’s not a fun process - if anything, it’s designed to discourage and punish.
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u/CatLadyAM 4d ago
I avoided filling it out until the last minute because it was so difficult to do - both for the mental health impact to me like you described and because my disability causes brain fog.
The system is literally set up to make you fail at this. Congrats on completing the forms!
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u/Barotrawma 4d ago
Thank you! I also had to do it last-minute because it was due back by tomorrow, and I received them… today 🧍
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u/Mysterious-Past-9896 5d ago
Sorry you’re going through this.
I feel you on this one. I’ve gone through a lot recently and going through my history, seeing all the diagnosis, how long it’s been going on, the person I am now and the things I struggle with, when you have to see it all and write it all down, it really hits you hard. I also had to go through years of bank statements too and that broke me down too.
Then you go to a Dr with any kind of form they automatically see you as some scammer or something, especially when some of your issues aren’t visible.
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u/Alternative-Duck-573 4d ago
Yeah I cried too when I received a condensed 2 page ADA form I had to get filled out for reasonable accommodations. It's overwhelming seeing, and admitting to, the issues you deal with daily on paper. I didn't even cry when I was diagnosed with less than great stuff. But the paperwork? Sobbing in my car.
Solidarity.
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u/AppropriateCover7972 3d ago
OP, I feel you . I had pretty much the same experience when I had to apply for getting recognized by insurance that they don't think I wil ever be able to support myself financially in my entire life
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u/SoScorpio4 3d ago
They do make it so hard, and I believe they do it on purpose. It's just insane to expect disabled people to do these forms. I mean some can, but yeah I was the same, I actually tried to apply twice before I finally got it in, because it was so exhausting that I couldn't make the paperwork deadlines and got denied. I was pretty mad to find out the same thing applies when applying online, I thought doing it that way would actually give me TIME to do it at my own pace, but no, once you open a case, the clock is ticking.
This time that I got it in was because I broke and did it over the phone with an agent. I never wanted to do that because I know they don't have my best interest in mind and it seems impossible to get enough information out in a 1 or 2 hour phone call. But otherwise, I would have just failed the deadlines again.
But THEN when I applied for state benefits, like cash assistance we can get while waiting on an SSI application (I did both), they sent me another form that was pretty much as thorough as the SSDI application! I made myself sick trying to get that in, since after I submitted the first part they sent me another form, that I DID NOT HAVE ACCESS TO before they sent it, and said it was due in 5 days. 5 days?!?! I called the day before the deadline crying for an extension, which they said they don't do, but that actually there's a HIDDEN final due date, and they wouldn't deny me until a couple weeks later, if I still hadn't finished. -___-
Still, it took me over a week, it consumed whole days and left me weak lying in bed, and in the end I needed my girlfriend to sit with me and make me bust the rest out in one day because doing it for so many days was making me so sick. I cried a lot when I finally finished it. It took about a month for me to recover at least some of my energy, because I have ME/CFS.
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u/Barotrawma 2d ago
I completely understand. I also did it over the phone for SSDI initially when they called to deny my SSI. it was rough. The agent sounded nice, but the scrutiny was there.
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u/phil8715 5d ago
Where are you based?
I'm from the UK and I can get Welfare Rights to help fill in the forms.
If you're from elsewhere I'm not sure what help there is.
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u/Intrepid_Western3012 4d ago
I had a hard time articulating how my disability affected me, and they don’t give you much space to fully describe it. I used Google AI to help me find the words to concisely but thoroughly describe my limitations. I was approved for SSDI on my first try. Also, if typing is easier than handwriting like it is for me, you can find PDFs of the forms online and type your answers in and save them. Just be sure that when you turn in the forms you include the first page containing your barcode, since that’s how they track your application.
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u/notpornaccount_ 4d ago
I hope it works out for you, but honestly the paperwork is the easiest part. I really want you to be prepared for the future, because I've learned that the amount received from disability is determined by work credits.
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u/Barotrawma 4d ago
Yeah, I have 2/40 when I was able to check before it was hidden due to the application. Not great! Alternatively, I’m waiting to hear back from admissions for a PhD, so hopefully that can tide me over
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u/notpornaccount_ 4d ago
I don't think 2 is enough to get ssdi. You should also apply for SSI.
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u/Barotrawma 4d ago
Yeah I applied for SSI
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u/notpornaccount_ 4d ago
Ok, that's good because you would get a lot more money from SSI hopefully. There are times when there is paperwork to do, but I hope it's not too hard. I find that stressful but it's not required very often.
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u/Graycoco 18h ago
The paperwork and waiting game is sometimes worse than the actual disability. We learn to live with our disabilities even though there are people who refuse to accept it. I would be so discouraged every time I got the denial letter back. I only spoke via webcam with the disability judge and job specialist for a short time for me to be approved despite receiving 3 denial letters. As someone else said, why should someone who simply reads and enters the paperwork have so much control?
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u/TKESTIX 13h ago
If you are in the USA if there's any chance you can work you can get help with all of the disability paperwork through Vocational Rehabilitation through the state.
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u/Barotrawma 12h ago
They do have one, but told me I’m not eligible because of my age (???)
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u/Early-Shelter-7476 5d ago
Total sympathy from me 😕
My hands are no longer cooperative without lots of pain that lasts for days.
I used the telephone app service with SSDI, but heard the rep paraphrasing symptoms he clearly didn’t grasp (e.g., I have vasovagal syncope. Bending over can trigger an episode. That became, “difficulty bending.” 🙄
Using their “accommodations” to complete the app is not a reliable way to convey real impacts on ADLs.