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Mon Apr 1, 2013, 08:12 PM

On Being Disabled [View all]

Last edited Thu Apr 4, 2013, 10:08 AM - Edit history (2)

I don't know why I felt compelled to do this, but I'd like to repost a reply I wrote to someone a few nights ago concerning people "scamming" the disability system. As I've frequently mentioned, I am disabled myself with an incurable pain condition. The day after tomorrow, I have to make the all-day trip to the University of Miami for a pain management visit, a trip which always strikes terror into my heart due to the distance. Perhaps that's why it's on my mind. Perhaps it's also because, as my condition gradually but surely worsens, one of the items on my bucket list is to advocate for the disabled before a large audience. I wish I could do it before a government panel, in fact, but the nearest congressman in Florida who might support it is Alan Grayson - not in my district, so I don't know how to contact him directly.

So, here it is. Read it through, think it over, perhaps learn something you didn't know. The disabled live a Hell most people can't imagine, and that's understandable, because the human mind wasn't made to process the things our bodies are dealing with. Still, trying to understand goes a long way, much more so than pity.


It took me over two years plus a really good lawyer and University-level doctors to get approved. That was on my third try, when I went before the Administrative Law Judge (who actually had to look me in the eye as I told my story instead of rubber stamping a denial).

You can't just walk into the local SS office and get SSI/SSDI. It is a grueling, excruciatingly complex and delayed process for anyone who does not have the most severely obvious disabilities, such as paraplegia or something like that. I had a double whammy in that I am only 28. My disability first began to present at 17, went chronic in my mid twenties. I also have a disability which is rare and little known, an 'invisible' illness only very well educated doctors can see the signs of. I'll get back to that latter point in a bit, because it's important.

My first two applications were denied almost as a matter of course. On the second time around, even though I was going to a University-level specialist, they had me see a SS doctor. A homeopath who really had no clue what my condition was or how deeply the pain and pharmacy of medications impact my life. In the end, I was required to go before a judge on the third try, which is where most people have their best shot. Remember, this wasn't weeks or months. This was years of persistence, of languishing in my illness as the bureaucracy sought ways of denying me.

I was fortunate. When I went before the judge, my evidence and the credentials of my doctors overwhelmed the fact that I had a rare, invisible condition. The ruling was fully favorable. However, in order to get there, I had to stand before a conference table of strangers and relate every minute detail of my condition. My pain is pelvic in nature, and I mean everything pelvic, so you can imagine how humiliating that experience was.

As I became ill when I was young, I didn't have the work credits for SSDI, so I had to take SSI. I'm grateful because Medicaid came with it and pays for my many medications. Otherwise, I get $710/mo. That is the cap. I receive the cap because I have an agreement with SS that I'll pay my parents what's called Fair Share, or an equation based upon total expenses of the household. In my case, that's $370/mo. So, right there, you have my funds reduced to $340/mo. Ironically, I was keeping more money without paying fair share, but at least this helps my folks.

You must then consider the expenses that small amount of remaining disability funding has to go toward. Dental care, for example, is not covered unless you want to go to county health to get your tooth yanked. I have to maintain a very expensive diet consisting of various dried fruits and whole wheat in order to keep my gut moving, due to all of the pills. Then, you have clothes. You have gas bills to get to the doctor. So many things. If you're very lucky, you might manage to scrimp away a little each month and eventually buy something for yourself, like a book or a video game. Something to keep you sane while you're housebound.

Oh, and then there's the reviews. The medical reviews to prove that, yeah, your body's still torturing you. The financial reviews where they intrusively examine your expenses to see if you've ever violated the rules. I keep a book which notes everything I pay for. Every. Single. Receipt.

Now, about the invisible illness thing. The term refers to people who have disabling illnesses not readily apparent to the naked eye. When we think of the disabled, we think of people who are mangled or whose bodies are obviously not functional in some way. People don't tend to consider that someone may have a neuropathy, a degenerative spinal condition, a hip issue, or any other number of things. In my case, I have Chronic Pelvic Pain Syndrome with Pelvic Floor Myofascial Dysfunction. If you were to look at me, I'd seem as healthy as can be, yet I'm in constant pain. I walk with a cane so that I can catch myself when the neuropathic shocks come. I lay down and stand because I'm unable to sit. I dread going to the bathroom because the pain in the aftermath means having to sit in the tub for some relief.

Don't judge the disabled. No matter how they look to you (and we do get very good at hiding our illnesses - most of us don't want the attention or pity), they may be living a Hell you can't begin to imagine.

EDIT: Wow. I didn't quite expect this level of recognition from my post, but I'm grateful for the well wishes and suggestions! I know my choice of words may have been rather blunt at points, yet I feel that's the only way to get through to some people.

So, since it was suggested to me, I'm going to do a shameless plug. Want to make me happy? Check out the following post and help me out if you can, please (please, please, please): http://www.democraticunderground.com/1018352086

It's an odd request, but it's better than staring at the ceiling all day, as in my case. Thanks.

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Reply On Being Disabled [View all]
Akoto Apr 2013 OP
freshwest Apr 2013 #1
duffyduff Apr 2013 #2
Akoto Apr 2013 #4
duffyduff Apr 2013 #7
Akoto Apr 2013 #8
duffyduff Apr 2013 #11
undeterred Apr 2013 #3
M0rpheus Apr 2013 #5
KT2000 Apr 2013 #6
sigmasix Apr 2013 #76
KT2000 Apr 2013 #77
Starry Messenger Apr 2013 #9
thucythucy Apr 2013 #10
mike978 Apr 2013 #49
Iwillnevergiveup Apr 2013 #12
Zorra Apr 2013 #13
brewens Apr 2013 #14
Ms. Toad Apr 2013 #16
riverbendviewgal Apr 2013 #42
Ms. Toad Apr 2013 #44
riverbendviewgal Apr 2013 #48
TexasBushwhacker Apr 2013 #21
kickysnana Apr 2013 #24
Bluenorthwest Apr 2013 #29
brewens Apr 2013 #65
Bluenorthwest Apr 2013 #68
Mr.Pain Apr 2013 #15
progressoid Apr 2013 #22
thucythucy Apr 2013 #32
No Vested Interest Apr 2013 #60
Mr.Pain Apr 2013 #80
No Vested Interest Apr 2013 #81
Mr.Pain Apr 2013 #83
GiveMeFreedom Apr 2013 #17
Voice for Peace Apr 2013 #36
liberal_at_heart Apr 2013 #18
Hekate Apr 2013 #19
Kurovski Apr 2013 #20
DonCoquixote Apr 2013 #23
OneGrassRoot Apr 2013 #26
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grantcart Apr 2013 #33
Voice for Peace Apr 2013 #37
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grilled onions Apr 2013 #27
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Akoto Apr 2013 #66
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Voice for Peace Apr 2013 #38
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