Saturday, March 3, 2012

When the Inability to Sit is "Not" a Disability

I have decided that applying for social security disability is one of the most dehumanizing experiences a person can have. I was denied disability again only two months after appealing my first denial. The denial determination explanation gives the almost exact same explanation as my first denial. It says "we realize that your condition prevents you from doing any of your past work (nursing), but it does not prevent you from doing work which requires less physical effort." Apparently there are a significant number of jobs that exist in the national economy for the occupation of a table worker, check weigher, and button reclaimer that I would be well suited for. I've been looking, but I can't seem to find any of these jobs!

I'm glad the disability examiner seems to know more about my health condition and my capabilities than I do. They insist (saying in both determination explanations) that I am able to do sedentary work because I can tolerate sitting for 6 hours out of an 8 hour work period even though my reason for applying for disability is because I cannot sit. I explained that I can only tolerate sitting for about 20-30 minutes (and that's with pain) with my cushion on a good day. I further explained that if after 30 minutes my pain level is a 7, for example, I cannot just stand up for a few minutes and then sit back down for my pain to decrease. When I stand my pain does usually decrease, until I have stood in one position for very long and then my legs begin burning, but after standing I cannot sit back down at my pre-sitting pain level. If the pain was a 7 when I stood up, when I sit back down it will quickly become a 7 again and only increase until I finally stop sitting for several hours. For example, if I go to church and sit 30+ minutes (pushing myself) through Sunday school that will likely be my sitting capacity for the day.

But the inability to sit is not a disability really accepted by the SSA. My condition is not clear-cut, as I've discussed before. There are specific listings and criterion that a disability must fit under prior to being approved, and as it currently stands my symptoms and diagnoses do not really fit under any of these listings. One would think I would fall under the category of "major dysfunction of a joint (do to any cause)" or "peripheral neuropathy", but under both of these listings a person must be unable to ambulate (or walk) effectively. It's as if the ability to stand in one position or sit for more than a few minutes is not necessary to hold a job? What can of job would allow a person to lie down every few minutes, other than maybe working from home (which unfortunately my background and training do not allow). I can still walk, praise God, but not long distances and even going for a short shopping trip can be difficult for me on some days due to leg and low back pain.

It seems that my case has been denied primarily because of my age and education level, which is why they haven't even looked at the massive amount of paperwork I have completed and continue to say that I can perform sedentary work, despite the fact I cannot sit. Unfortunately pain, illness, or disability does not only affect the aged and uneducated! The first attorney we spoke with explained that unfortunately SSA disability is a system. It is often a system that is abused, therefore, it cannot afford to pay benefits to someone like me who is still very young and may need to draw aid for a long time.

The sad thing is, it's $1,000 per month. It's not a huge amount of money (in the western world). Why would I really choose to stop working so I could make $1,000/month when I could easily make $40,000+/year as a nurse?! Who would do that? Who can live off $12,000 a year?! I hope and pray I do not have to live long term on disability, if I am ever granted it, but currently if it were not for savings and financial help from family/friends we would not be able to pay our medical bills. Last month alone we had over $2,000 in medical bills and medical related travel. All we hope to do is use a disability check to pay for my medical care until my husband can either get a better paying job or I get better.

We thought we had found an attorney to take my case, but he is not experienced enough in disability to feel confident with a complicated case like mine. We plan to meet with a case worker from a large firm on Monday to discuss my case. The next step is to apply for a hearing to meet before a judge and basically plead my case, however, it will be at least 8-12 months before we will get a hearing date. I only have about a month left to file for the hearing so we are praying this firm will take my case. They handle around 250-300 cases a year and have about an 85-90% success rate so we are hopeful they will be knowledgeable enough to help me. But in reality it boils down to whether the judge will have compassion on me or not. It's easy to stamp "denied" on some paperwork, but much harder to look someone in the eye and tell them, "we don't believe you."

On my denial explanations they say that my account of my pain is only partially credible meaning basically they don't believe me because there's no "proof" of my pain. But who or what can really measure pain? Does a "negative" MRI mean that a person should not be in pain? Two people with the exact same injury will not rate their pain exactly the same; why is that? What about depression, is there any way to prove that a person is depressed? How can we be sure they aren't pretending or exaggerating?

Even with our advanced modern Western medicine, there are many things about the human body that are not understood. Ironically these mysteries often cause dehumanization when in reality they are what make humans so fearfully and wonderfully made. Afterall, who marvels at what he completely understands? Thankfully my worth does not come from a disability examiner or in the ability to work and be "normal". My purpose and value is found in the One who intricately knitted me together in my mother's womb and who knows every hair on my head. My condition has not escaped His notice or His plan. In this I find peace and hope.

"For you formed my inward parts; you knitted me together in my mother's womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them."  Psalm 139:13-16 

"Are not two sparrows sold for a penny? And not one of them will fall to the ground apart from your Father. But even the hairs of your head are all numbered. Fear not, therefore; you are of more value than many sparrows." Matthew 10:29-31


  1. I'm so sorry you're going through this. You're in my thoughts.

  2. I have read those sentences you quoted in almost every denial letter I have come across. It's SSA's typical response, and of course it's nonsense. I know it's so discouraging, but most cases end up having to go to the hearing level. You can go ahead and file your request for a hearing before you meet with the attorney. You don't need an attorney to do that, and that would be one less month you'd have to wait for that hearing date. I will pray that the meeting with the case worker goes well and that you find a good attorney to help you. I am so sorry you're going through this, and I know the process is frustrating. Don't give up!

  3. Thank you so much for this post. It must be so tough to write about, but people need to realize how dehumanizing this experience is.

    Good point: "Ironically these mysteries often cause dehumanization when in reality they are what make humans so fearfully and wonderfully made."

  4. I have a chronic painful sitting condition. I actually qualified for disability (without the need for an attorney) based upon my back disk degeneration (unrelated to the sitting problem).. Even with financial help and not working, I am in constant pain. No one understands how simply sitting can hurt so much. My heart goes out to you.

  5. I'm so sorry to read that you have sitting disability! I have that also. I cannot sit for more than around 5 min. you're welcome to read what other people with sitting disability have said in my online support group:

    There are so many people with reduced ability to set. The problem is most of them are isolated in their home. They think they are alone with this problem. They are not!

  6. I solved the SSD denial problem with my sitting disability (pudendal nerve neuralgia) by moving to another state. Judges in some states--mine was New Jersey--are under special pressure to deny certain percentages of candidates. In NJ there were too many applicants and many fraudulent claims that I just couldn't fight my way through. When I originally applied for SSD in 1986, I couldn't sit even 5". I was denied and denied on appeal. In desperation (against doctors' orders), I tried to go back to work in 1995, failed after a few months, worsening my condition. I reapplied for SSD again, was denied, then denied on appeal on the sole basis, according to the judge, that I didn't take enough pain pills. Finally I moved to North Carolina in 2001, reapplied, and found a sympathetic judge who spent the time to read my decades-long doctor reports and listen to me before finally granting me SSD, This was EIGHTEEN YEARS after I actually became so devastatingly disabled, unable to virtually leave my house because of my inability to sit.

  7. I am so glad for you that you eventually got an understanding judge - but it is really sad that it took so long.
    I also have a sitting disability (coccydinia and pelvic pain) and find all seats uncomfortable; I don't sit on soft seats at all. Sitting causes me immediate pain - which continues when I stand again. It can be really excruciating - so I avoid sitting completely. Hard seats I can tolerate for a few minutes.
    I sit on a car tyre inner-tube to travel (rest my coccyx area in the hole of the tyre) - I can only manage about half an hour travelling.
    (I have been like this for 4 years).
    I hope your condition improves - it is good to know there are others who understand.