Dissability increase on Melissa Harris-Perry. WTF did you think was

[Akoto]

14. Hello! As a young person on disability, this is bullshit.

Scam the system? Please. 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.