The Relief of Belief
For my fellow comrades who have lived through the trials and tribulations of trying to make the world see us as we truly are, sick and in need of help, you understand more than anyone how hard this life is.
We didn’t choose it. Chronic pain is not something we asked for. Invisible illness isn’t something we wanted. Autoimmune diseases are not a life choice. And yet everyday we are treated like this is our fault. Like we brought these horrendous ailments on ourselves because of our diets, our amount or lack of exercise, our unwillingness to just “get over it”. We are judged, shamed, treated with prejudices, mocked, and generally frowned upon because of one simple fact: we are sick.
There is not one day that goes by where I am not asked why I’m not doing more to help myself. I cannot explain the depth of my exhaustion and exasperation at the ineptitude and rudeness of these individuals. I do not know how much longer I can continue to be polite and forgiving towards those who push their unsolicited “advice” on me. I have been sick for over three years now with this incurable disease, and in this time have met less than three people who share it with me. These three people are the only people, besides my doctors and others with similar chronic ailments, that are permitted to give me advice on how I should take care of my body.
As I’ve stated countless times before, having experienced a migraine is not the same as experiencing daily chronic pain. Neither is being tired after a long day at work, the same as being too exhausted by your disease to get out of bed. That being said, No, I don’t feel lucky that I get to take a lot of naps. I am happy that your cousin’s best friend cured their cancer with herbal tea, but I’m sorry, that’s really not the same thing as what I’m going through. I also understand how much You hate BigPharma, and how they are ruining the world with their drugs and high price points, but you have to understand that I can’t just stop taking my medications. I could die. Seriously.
Is that fact something you can at least wrap your mind around? Or is my life less important than your beliefs?
Speaking of beliefs..
When I first filed for Social Security I had to live off the belief that there was someone out there that would see me for who I am, and what has happened to me, and help me. Little did I know how hard that concept would be for people. How cold hard facts placed right in front of someone’s face could still be pushed aside, ignored.
Initially, not only was my disease not taken seriously by the Social Security Department, but also by friends and family who could see my ailments first hand. How could anyone dispute what their own eyes could see? My swollen fingers weren’t supposed to be the shade of eggplants. A healthy woman in her early thirties shouldn’t cringe when she stands up from a chair. And even if the physical sight wasn’t enough, shouldn’t the fact that trained professionals were prescribing me STRONG medications be a clue??
Two years of chronic pain, heavy medications, failed treatments, and sweat and tears… And in those two years I was denied by the Social Security Administration three times for “insufficient evidence of disability”. Ridiculous. Three pointless denials before I broke down and hired a lawyer to save my own sanity. And still another year followed slowly before I was even given a chance to plead my case to a live person, and not a stack of papers.
And tell me why my illness, my disease, is looked at by one person, and that person decides if I’m sick or not? The system scares me, to be honest. Three years of agony, and my financial and medical future is decided on by one person whom I’ve never met before. Someone who hasn’t seen my daily struggle, can’t see me when I’m in the ER every month, isn’t with me as I take my thrice daily handful of pills, and wasn’t by my side in March when I lay on the bathroom floor unable to move.
The idea that something so important is based on a decision of one person is scary. But all I needed was one person to believe me. Just one. One person would seal my fate, no matter what.
On May 11th, 2016 a letter was written to me. It’s contents were the decisions of one man, and one man only. My hands shook as I opened the envelope, and I can honestly say that I’ve never felt such paralyzing fear in my entire life. Three years of waiting. Three years of wondering why people could not see what was happening to me. Wasn’t it as painfully obvious to the world as it was to me?
Letter in hand, I read the text. And then I read it again. And then again. Tears spilled over my lower lids, and I hastily brushed them away, only at that moment realizing my very public placement inside my favorite coffee shop.
Notice of Decision: Fully Favorable
Three years. Three years for one person to finally look at me and decide I needed help. No, not decide. Know.
And following this statement of decision was a declaration of why this one person came to the conclusion they did. It’s a very long declaration, so I won’t be quoting the whole thing. But there are a few lines that really spoke to me, and led me to greatly respect the person who wrote them…
“I give great weight to these findings as supported with the overall medical record and findings of the claimant’s Rheumatologist, and agree completely with the testimonials given by (said) doctors.”
Finally. After three years of appeals, and chasing down doctors notes, labs, and medical records, there is one person in the Social Security Administration that sees how sick I am. And not only sees, but understands what I’ve been through. The relief of that acknowledgement was immeasurable. And to make it even better, (not that it was necessary to, but gosh was it wonderful anyways) a personal testimony of how my case was wrongly denied.
“….the State agency consultants did not adequately consider the claimant’s impairments, and rendered their opinions prior to completion of the medical record…”
Upon completion of the letter I initially thought I’d be angry at the fact I’d been wrongly denied for three years prior to my approval. But I found instead that I was only elated that I had finally found peace. Peace through the fact that the one person that I needed on my side, came through for me. I cannot quite put into words what it feels like to finally be believed. To say it’s a relief would be a gross understatement, but for now, it will have to do.
Three years for someone to believe I was truly sick and truly needed the help. They made their choice based on extensive medical record and the testimony of my doctors and myself. That’s what they needed to determine their ruling. What is it, do you think, that my friends and family need to make theirs?
To be clear, I am extremely grateful that after three years a judge has finally ruled in my favor regarding Social Security benefits and Medicare. I will however not be receiving said benefits for quite some time as told to me by the administration. I am lucky to have gotten them, yes, and now get to play the new waiting game of When do my benefits start? I’ve been told I can look forward to them in the next six months. Phew, long time! And because of this extensive waiting period, my donation page is still open for financial help and support. I thank everyone who has been a part of my journey for Social Security Disability help!
For financial support: http://www.gofundme.com/sixthousandsteps
Posted on June 1, 2016, in The Journey and tagged alone, chronic illness, chronic pain, family, invisible illness, loneliness, rheumatoid arthritis, Rheumatoid Disease, sick. Bookmark the permalink. Leave a comment.