Applying for disability is a demeaning, humiliating, invasive process.
I’ve heard it could take as little as three months to be awarded federal disability benefits, but I would probably have to be literally dying. I’ve heard it’s possible it could take six months to a year. “It’s possible” in the world of bureaucracy is nothing to lean on. Most people trudge through two to five years of endless forms, initial decisions, appeals, reconsiderations, and hearings before becoming card-carrying members of the unofficial federal disability club – if they’re successful. In kind terms, the Social Security Administration (SSA) drags its feet more for those who are younger, more educated, and healthier-looking. The SSA is less likely to award disability to those who have worked recently or, ironically, to those who have worked fewer years. Additionally, the lesser known or more abstract the disability as well as the more physical (as opposed to mental), the less willing the SSA is to acknowledge a disability. These are facts I have been told by staff at my attorney’s office, and all but one of them apply to my case.
(here’s a link with some stuff that makes sense)
As if I hadn’t already made the most difficult decision of my life to accept my inability to work, applying for disability takes it one step further, forcing me to accept every single other thing I can no longer do, even those I am not ready to accept. I still have dreams of being healthy, so please don’t take what’s left away from me too.
My reality has been muted by the towering, sound-proof piles of paperwork that sprout legs and chase me while I toss and turn at night. I have to prove to the Social Security Administration that I am unable to work, but also that I can no longer function independently. I have to prove I no longer have a life despite all I have done to maintain a semblance of living. I feel I am on the middle school debate team and I’ve been assigned the side I don’t agree with; in order to win I have to admit that I am incapable of the freedoms I embraced in yesteryears. I have to do more than just admit them – I have to fully believe my inabilities enough to prove them true to strangers. I have to believe I’m less than I ever imagined I would be so that others will believe me too.
The piles of paperwork litter my kitchen table as I struggle to answer questions about my (in)ability to interact with people, go outside, take care of my health, and accomplish chores.
I feel I am exaggerating when I say I cannot clean my home, even though as I write the answer I can see the piles of dirty dishes in my sink, smell the trash, and feel the gritty bits of dirt and detritus gathering on my floor.
I feel I am exaggerating when I say I used to cook but can’t anymore, simply because I still want to cook. As I write the answer I look at the recycling bin full of receptacles for microwave meals. I open my fridge and see the empty drawers that were once overflowing with fresh vegetables to cook. I finally gave up on buying them; weeks would pass as they shriveled and I ate microwave-heated, sodium-rich soy gravy nuggets.
I still dream of from-scratch meals and crave the crunch of a perfectly cooked stem of fresh broccoli, yet I archive these thoughts as I tell the Social Security Administration I can no longer do these things.
Saying I can’t work is easy. I understand now that I can’t. It’s the other parts of the disability process I struggle with. Home life. My personal activities. Big Brother has his magnifying glass held aloft to observe every move I make – to see if, as a beautiful, healthy-appearing 29-year-old, I really do have trouble lowering myself to the toilet many mornings. To see if my friends really help wash my dishes. To see if I can ride my bike a mile across town and use the evidence to claim I have no physical problems. To see me interact for two minutes with a stranger without having a panic attack and use it to claim I have no mental trauma. To watch me sleep, to see if I have insomnia and nightmares. Come on over, Big Brother, the sheets won’t be clean.
I know I am disabled and cannot work, but I haven’t given up hope for the other parts of my life. I haven’t forgotten what it is like to cry while cutting onions. I haven’t forgotten the warmth of the dishwater as I scrub away a meal that I made from scratch. I haven’t forgotten coming home to pleasant smells and a clean floor. I haven’t forgotten the joy of spending an evening out with friends, or a day trip to the ocean. I haven’t forgotten the freedom and power of running several miles. I haven’t forgotten, and that is what keeps me from accepting the losses I never imagined were possible.
I remember how whole I felt before, and now I am left with broken pieces – pieces I hold on to so dearly, like broken pottery.
I have learned, by looking at myself through the eyes of the Social Security Administration, that I am nothing more than my disease – yet I am simultaneously defined by everything I have lost.
Time and time again, I am painfully reminded that having a life outside my disability is simply unacceptable – if I am disabled, it must be my only identity. Every moment I must be available to stand naked in front of Big Brother’s magnifying glass for an invasive, full-body review before the conveyor belt jolts me to the next box to check on a government form.
If I need disability benefits, I better be able to prove I am worthy of occupying the lowest rung of the ladder in a bureaucratic nation which, by the way, means I work harder than the rest just to keep from falling.
But I won’t give up. While this process is taking everything I have, I will not give up. Because people with disabilities don’t give up. We don’t have the option.
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BeingCharis 
I was repeatedly denied disability with cancer for which I had to travel every 3 months out of state for due to it’s rareness, passing out from POTS and being on daily continuous IV fluids, and 16 other health issues. It took 2 years to win with an attorney. I have so much trauma from the process. It’s now been 6 years of no improvement and I’ve been pulled for a full medical review. See once we are deemed disabled we must continue to be dehumanized and must continue to PROVE we are disabled. The maddening part? They asked me to list every doctor I have seen in the last year. So I did. The examiner sent a records request directly to the doctor’s office instead of the hospital system where records are housed. So they got back “no records”. They called me and said I had 7 days to respond to them but failed to leave me a call back number. And when I called the field office they had the wrong number to the examiner. I didn’t finally receive a letter 2 days before my deadline. It gets worse. I say I want to help them get records. Nope. You can’t do that. THEY have to request the records. But I did it anyway. I uploaded every damn page to the SSA gov website and then called the field office and told them to attach it to my file. I got the examiners fax number and flooded it with files. Not today Satan. Not today. See, if they don’t get records on you withing their arbitrary timeline they WILL cease you and then you have to appeal and go through all the shit again. It’s a nightmare. I am now 6 days late in changing my central line dressing, I haven’t eaten or slept in a week. All my energy has went to re- proving disability. And god forbid you ever have a good day. If you do -they will say you aren’t disabled.
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I just went through this process and found your article. The whole thing was frankly, traumatic. I relate to every word you wrote, it is giving voice to the experience I am only just beginning to find my own words for. Thank you.
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Admitting disability is a soul sucking process. I’m not looking forward to the day I return to that place. I will say though the SSA application process is awful. I help people get their benefits and there are a few tips. First is hire an SSA lawyer who practices in your state, their few is capped and confined to your back pay.
The second is that the medical records you provide are extremely important. When I did my short and long term disability claims (through my employer) every single note my doctors had written matter, as well as how that note was spun! I was also miraculously approved when I send in my extensive and nutty notes from my hospitalization that fall.
Wishing you the best with it, it really is an absolutely terrible process.
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Fantastic words as always ☺
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I have AS. I like to say that it doesn’t have me, but there are many days when that is just not true. My last day of work was March 13, 2015. I applied for SSDI on March 26, 2015. My initial application was denied. I appealed. Denied again. I am now waiting for a hearing date. My attorney tells me it could be as long as 12 more months before my hearing is even scheduled, much less before I am actually standing before a judge. I had a short term disability policy that covered the AS diagnosis for one year. That has been exhausted. Fortunately, or unfortunately depending on how you look at it, I have several other diagnoses to choose from. If the insurance company will take it. Even so, that policy pays $33.33 per day, which equals $1000 per month. Tell me, who could live on that? If it weren’t for family and friends who have stepped up to support me, financially, physically, spiritually and mentally, I can very well see myself living in a cardboard box under a bridge. No, I take that back; I wouldn’t be here anymore to live anywhere. Every month when those bills roll in I think to myself, ok, that’s it, I’ve just GOT to go back to work. And then I have a completely sleepless night because the pain is so bad. And the next day my head is full of fog and I can’t think straight. And the pain is still so distracting that I find myself talking gibberish to my friends on the phone. And I can’t stand up long enough to shower. Or even manage to put socks and shoes on without assistance. Or the barometric pressure drops and I’m in a full blown flare for a week. “Oh hi, Mr. Employer, I’m such a catch, you should hire me immediately! BUT…if it rains or turns colder, I won’t be able to make it in to work. Or sometimes I have pain at night so I can’t sleep, so I won’t be able to make it in to work. Or my back suddenly starts to spasm, blah, blah, blah. But hey, I’m a great catch as an employee!”
Yeah, right.
So I will fight the good fight. Right along beside you. Because I, too, have no other choice.
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I’m so sad to hear there are so many similar stories and experiences with this disability fight. I want to do a study on people’s experiences while fighting for disability that highlights the harshness of it.
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Hit the nail on the head again! Do I really have to admit out loud all of my failings? And do I really have to feel guilty on the very few days that I actually can do something? And by something I mean the huge accomplishment of showering, grocery shopping and cooking a simple meal all on the same day. Is it considered being a liar if I hold onto a little hope that I can be able to do normal things like maybe clean my bathroom instead of using chlorox wipes on the toilet and calling it good enough. Because it was plenty hard enough to admit I was no longer able to feel like a contributing member of society, now you want me to admit I can no longer care for myself in a way that wouldn’t make my grandmother roll over in her grave knowing how unclean my home is.
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Thank you for sharing this here, Kathi. These are such powerful words.
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