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Disability Experiences: Writings and Perspectives

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Why doesn't the world care?

July 17, 2013
The following personal experience offers insight into the frustration people face with the challenge of chronic health problems and disability from work and not being able to obtain the services they need to help. Unfortunately, when people who can no longer work are denied benefits, where can they turn for help? Amelia describes her life with chronic debilitating illness and disability and her frustration of being denied assistance by Medicaid. People face misunderstanding and discrimination when their disability is invisible. Thank you to Amelia for sharing her experience for the benefit of all of us. Visit our FAQ section as we try to find solutions to the hardest but unfortunately most common problems faced by people with disabilities.

From Amelia:

Because my disability is mental, I face discrimination and frustration every day. I have been denied Medicaid over five times in the past 13 years, only receiving it once when I was diagnosed with cancer. Once the cancer went into remission, my Medicaid was removed because I no longer had the disabling condition they gave me the Medicaid for - and now I am in the process of re-applying with my other health conditions that I have been consistently denied for (Severe arthritis, degenerative disc disease, Bipolar I, Borderline Personality Disorder, and a string of other conditions that are related to my Type 2 Diabetes).

I have also been denied SSDI five times in the last 13 years for the same reason - I have conditions lasting over 12 months but they don't result in death and are not perceived as keeping me from being able to hold a job. I also have a Master's degree which I worked very hard to get, only to break down at my first real job. This doesn't matter - neither does the fact that I dropped out of college twice and almost failed once. The only reason I completed college was rigorous weekly therapy and my therapist wrote a letter to the college board vouching for me. Why doesn't any of that matter?

This last process of SSDI application has been with a lawyer. I've been denied until I had to face a judge on a television and a vocational expert who was speaking to us by phone and said I could perform jobs that I am completely unable to perform due to my arthritis and the condition of my back. When I stated this, I was shot down. I was treated like a criminal and a liar.

I just received my denial for Medicaid disability today and have to go through the appeals process again. I feel worn out; hopeless. I had my hearing for SSDI this month and await their denial as well. From my understanding, this is the last time I can apply for SSDI - this decision is final.

I take over 20 medicines a day and am consistently bedridden. I need help to shower and to do most daily tasks because of my back and arthritis. I have frequent bouts of depression and suicide attempts or self-harming behavior. I have been in therapy since I was a child and take medications to keep me under control. Even so, I still have days where I explode and am unsafe to myself and others. I have not held a job for more than a year my entire life due to my instability (unless I transferred to another department to keep employment for another year). I have problems with bosses, subordinates, and people in general and I always have.

When I found out I had cancer in 2009, it was on the tail of losing my fourth child. I don't have any children and after my hysterectomy, I now live barren and it has defeated me in ways that other parts of my life have not. The cancer is in remission, but I have since faced pre-cancer in my liver, mouth, and on my skin with biopsies and removals and am now due or checkups with all four of my oncologists but cannot get any health care because I have not worked for over two years and have no health insurance. So, I am getting sicker every day and more scared every day and there is nothing I or anyone can do.

Do you know why? Because I didn't spend all those years wracking up tens of thousands of dollars getting necessary healthcare the right way. I now know that I should have had my eye on disability every time I visited a doctor or therapist. I should have had it documented consistently why I was disabled or how I was disabled or what was disabling. Let's not discuss the number of doctors who refused to even help me with disability because I'm "young and should buck it up." I even had a primary care doctor who fought against me getting disability for years because of that very reason.

Have an illness that was documented in childhood and has always been disabling? Well, every doctor visit had better mention it - even if you are there for the flu. This is what I face - I am a liar because every single piece of paper does not document a disability but a plethora of smaller issues (that added together equal a life of disability but singly mean nothing). Being in and out of inpatient therapies my entire life means nothing either, apparently, because I couldn't afford any healthcare at all the last couple of years so my family had to keep me alive while I cut myself, overdosed, and went nuts on a monthly basis for those years. Is it documented? NO, so it doesn't matter and it doesn't count.

Basically, and I know no one will read this entire thing because it's depressing and negative but I must vent, if you want to learn something from my experience - have every single disabling condition well-documented at every visit, rack up over 100,00 dollars in debt for healthcare (I racked up 75,000 with no insurance and that apparently wasn't enough for them), and hire a lawyer from the beginning. However, if you are under 50 and educated, even those things probably will not be enough. I don't understand how someone can get disability for mere depression and I can't get it with all of these conditions and more severe mental illness than that - why doesn't the world care?

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