I am in the final stages of my final shot at getting Social Security Disability. I have had ME/CFS for 10 years, applied to Social Security several years ago, and have already been rejected twice. My lawyer is helping me to prepare for my final hearing, before a judge (by video), next month. My chances are slim because Delaware has the 3rd lowest approval rates for disability of the 50 states. Lucky us. It really comes down to which of the four disability judges you get; some are known for turning down almost everyone. That is just so wrong, that in the end, it doesn't matter what the merits of your case are but which judge you get.
I met with my lawyer a few weeks ago, and he explained that my case was weak because it relies mostly on self-reporting my limitations - I wrote a narrative explaining what I can and can't do and how the post-exertional crashes and OI restrict my activity level, made copies of 10 years' worth of calendars, data, and graphs, and submitted letters from my doctors. Despite all this, my case has now been rejected twice, so I am trying to strengthen my case with more medical evidence (like my recent OI test ). Ironically, you have to work very hard in order to prove that you can not work.
Beside the physical consequences of having to put so much effort into filling out forms, gathering and copying documents, requesting letters, etc., I am finding that the emotional cost of applying for disability is much greater than I expected.
For starters, there is the very degrading and dehumanizing aspect of simply not being believed. I have tried for 10 years to carve out a second career as a freelance writer in accordance with my limitations, and I have been unsuccessful in earning enough money to contribute anything significant to my family's income. I would give anything to be able to be productive again! And yet, after submitting all of this evidence of my disability, two sets of reviewers have now told me that I am perfectly capable of working full-time as a consultant, like I used to. Really?? So, even though sitting in someone's living room for a 2-hour book group leaves me exhausted and useless the next day, Social Security says I am able to manage 8-hour days spent on my feet auditing or teaching or leading groups of people. It's so absurd it is almost funny...except it's not funny when it is happening to you.
My lawyer suggested getting one more set of letters from my two primary doctors, along with two more forms for them to fill out, specifically stating that I can not sit up for more than 2 hours without needing to lie down and rest so I am unable to manage even a sedentary job. I met with my primary care doctor yesterday, and she was wonderfully supportive. She is also angry with Social Security for not accepting all the previous evidence submitted. She typed another letter, while I was sitting there, which leaves no doubt that I can not work. She explained to me that she rarely writes this sort of letter, even though she is asked frequently. She said, "It is rare that a patient is so disabled that they really can't manage any job at all. I wish the judge could look through the records and see how rarely I have supported a disability claim." But she did it for me.
When I got home from her office, I found a letter from my CFS specialist waiting in the mailbox for me. She is also getting frustrated with this ridiculous process and wrote a very strongly worded letter to go with the form. It was exactly what I had asked for. So, why did it make me want to cry?
Despite 10 years' of daily experience telling me this, it is still disturbing to read in black and white, "...I deem her prognosis to be poor and recommend total and permanent disability." Having to face the reality that my illness is severe and permanent is heart-breaking. I think my primary care doctor (who knows me well) realized this because she said to me very gently, "I'm going to write that your illness is permanent so there is no question of the need for disability, OK?"
There are so many things I want to do with my life! I want to write another book but have not found the energy or productive time to get further than the first chapter and outline, after five years of trying. I want to go backpacking again and take long hikes through remote wilderness with my family. I want to exercise - oh, how I want to exercise! I almost started crying yesterday when I drove past a sign for Zumba classes - I would love Zumba! I want to spend time with my friends and family and really enjoy myself and them, instead of always having to be so careful. I want to write and travel and hike and, yes...work! I used to define myself in part by my professional success. I became an expert in my field, wrote a book, gave talks at conferences and meetings; I enjoyed my work and was proud of my success. Knowing that is all in the past is heart-breaking.
I think this is all hitting me extra hard because I haven't been feeling well lately. In fact, in preparation for my doctor's appointment yesterday, I looked back over the last two months (still keeping those records!) and realized I've been worse since the beginning of September. So, that makes the emotional stuff harder because I am even more limited and restricted than usual.
I think this process of applying for disability would be difficult even if the process itself were perfect; it's hard to face your limitations in such stark terms. But the fact that the process is incredibly messed up just makes everything so much worse. It is humiliating to keep trying to prove how disabled you are, when it seems like no matter what the evidence shows, you will be rejected and not believed.
Well, one way or another, it will be over a month from now, but I think the grieving will go on.