When I first wrote about applying for disability, I mentioned a standard practice of the Social Security Administration: default semi-automatic denials of disability claims. On average, it takes 3-5 years for someone who is disabled to be awarded benefits. This routine dragging out of claims affects me and many others financially and emotionally and also feels immoral and unjust. The disability process has been intentionally crafted to be as difficult as possible to navigate and even survive, yet this program was founded for the purpose of helping people live better lives.
The following letter is my formal response to a denial of my first claim. To be clear, many claims are denied twice before moving to a hearing with a judge. I am sharing this publicly because I want to expose the vulnerability so many go through as they seek disability – as they seek resources so they might live longer, healthier, fuller lives in the face of significant barriers to a substantial work-life.
Before I share my letter, here are some reasons I was told I am not disabled under the rules of the Social Security Administration:
“Although you experience back pain… [and] have a history of neuropathy, which is limiting, the records show that you are able to walk and move about in a satisfactory manner and that your condition imposes no major limitation upon your ability to function… Although you indicate you have insomnia, this is not disabling. …you are HSV-2 positive; however, at this time you have no significant complications of HSV-2. While you experience some occasional fatigue, you are able to get about and perform work activities.”
“Though you may experience symptoms of mental problems, your records show that you are able to think, communicate, and act in your own interest. …you are able to adjust to ordinary emotional stresses and get along with others, as well as to do your usual activities and to remember and follow basic instructions.”
“…it is determined that you should be able to…frequently lift 10 pounds, stand and walk up to 6 hours in a normal 8 hour work day, and sit for about 6 hours in a normal work day. …you would be restricted from occasional climbing ropes…You would also be restricted from frequent climbing of ramps and stairs…”
“Based on psychiatric evidence… you have the ability to maintain the pace, persistence, and concentration needed to perform unskilled work over a forty hour week and adapt to changes in routine.”
Even though I expected this denial, my initial response to the letter was, “You don’t know me!” I spent a few weeks beating my pillow, overwhelmingly frustrated and baffled that someone who has never seen me face to face could judge me with such confidence, before sitting down to write this letter.
July 20, 2016
Dear Social Security Administration Disability Determination Analyst(s),
I would like to share what it is like to live in my body. I respectfully ask that you read this statement and consider it an equal addition to my medical records. I want you to see me as a whole person while you decide what you truly believe benefits my life.
I remember what it felt like to push myself beyond my limits by choice. I was a college soccer player, a marathon runner, and a professional mover; but this was years ago. Now, because of multiple debilitating diseases and conditions I am forced beyond my limits just to survive each day. I have watched as my ability to work has fallen from 50+ to 30 to 20 to 15 to 5 hours or less per week. I am no longer even able to care for myself at home. This is the last direction I ever imagined my life would go.
I do not simply experience back pain. I endure constant, excruciating, debilitating pain in my back, SI joints, shoulders, hands, fingers, and knees. While I am ambulatory, I am unable to stand for longer than 7-10 minutes without agony and using a cane for support. On rare good days I am able to walk several blocks or even ride my bike, but what I do outside my home is an accumulation of all the energy I can summon over several days. Most people do not see when I return home and I am in agony, doing everything I can to be comfortable and to recover. I was once a from-scratch-meal-or-bust kind of person; now I cannot stand long enough without pain to wait for a four-minute microwave meal. My dishes remain dirty, dirt and detritus covers my floors, and a mustering load of laundry sits forgotten in the washing machine for days. This is not laziness; I cannot wash, clean, cook, fold when every moment is pain and fatigue and brain fog. It is impossible to imagine transferring these inabilities to any semblance of a sustainable work-life.
Pain in my hands and fingers feels like freshly broken bones. Handshakes cause me to wince. I use compression gloves, a wrist brace (that I can’t afford), and other accommodations to help open a dryer door, chop vegetables, turn a handle, write with a pen, and more – and even then with tearful pain. Pain in my back and knees makes me unable to sit longer than 5-10 minutes without needing to constantly take pain medication, massage myself, shift my weight, get up to stretch, and elevate my legs horizontal to the floor. I used to sit in front of a computer all day without moving, now I have extreme pain if I sit for a short time.
Extreme fatigue, post-traumatic stress disorder, and major depressive disorder (recurrent, severe) keep me from regular activity that is physically or mentally demanding, including interacting with coworkers, customers, bosses, and the general public. I am unable to sustain repetitive interactions and duties without having severe physical and mental consequences both professionally and personally.
I am scared of walking down a certain street or entering a certain store because I’ve seen my abusive ex there multiple times; just being in these places triggers an impulse to hide, a tensing of my whole body, a racing pulse, and intense and blinding flashbacks. My fractured, medicated sleep is traumatized with nightmares of my abusive ex, my best friend who died under extreme trauma, my grandfather on his deathbed, and a broken childhood. Many mornings I “wake up” after having tried for 10 hours to fall asleep. Fatigue from lack of restful sleep affects my ability to function, especially my memory: I walk into the bathroom and forget to brush my teeth. I open my front door and forget I was going outside. I lock my keys in my apartment multiple times a month. I hate myself for these things.
It was mentioned in the denial letter that my insomnia is not disabling. It could be claimed that any one of my disabling conditions is not disabling on its own, but my numerous comorbidities put together create a compromised reality for me. I endure constant pain, fatigue, and emotional stress from ankylosing spondylitis; anxiety, flashbacks, panic and emotional and mental duress from PTSD and major depressive disorder; uncharacteristic pain and prolonged outbreaks from genital herpes (HSVII) because of my weakened immune system; on top of insomnia and other conditions.
These examples of my reality do not depict someone who is able to work substantially. My symptoms, compounded by medication side effects like drowsiness, dizziness, nausea, and dehydration, do not allow me to function in a work environment.
I invite you to consider the symptoms you feel when you have the flu. Your body aches all over, you are tired to the point of exhaustion even though you haven’t done anything, you can’t think well from the pain and the fatigue, and you want someone there to take care of you, but you also don’t want to be around people. You’re allowed to be sick for a few days, but people expect you to get better with rest and medication, and you usually do. But if you were to remain sick with the same symptoms forever, people would no longer pity you, even after showing them a medicine cabinet full of failed medications. They’d wonder why you don’t get better. You’d start to internalize these ideals, leading to your belief that you shouldn’t be sick. So, though you are still sick, you start acting like you are healthy just to be accepted, and subsequently become sicker. Because no one likes someone who is sick all the time, do they? These are some of the dehumanizing messages I hear weekly from those who think I should be healthy just because my illnesses and disabilities are invisible.
I still want to be human. By applying for disability, I threw in my last straw for a chance to preserve the health I have remaining, though as days tick by I watch even that “health” trickle through the hourglass. I implore you to consider the power of your role in deciding mine, and so many others’ futures, and help me maintain my humanity by awarding me Social Security Disability Insurance benefits based on my incontrovertible inability to support and sustain myself with work. All I want is to live a life where I can focus on my health and try to find some meaning. I also want peace. And I want the same for you – peace, as you leave work today, as you go home to your life, where you can forget about this work until tomorrow.
Thank you for your consideration.
Readers: I am not going to give up my fight for disability. I also wouldn’t be able to do it alone. If you are reading this and scared out of your mind from applying, please don’t be scared. Just know going into this battle that you cannot give up – you now know what to expect. I highly suggest hiring a Disability Attorney. A majority of Disability Attorneys do not get paid unless they win your case, and the fee is limited to 25% of the past-due benefits you are awarded, up to a maximum of $6,000. Note that the attorney will be paid only out of your past-due benefits, or “backpay.” If no back-dated benefits are awarded, the attorney will not receive a fee.