I spent five years fighting the government for disability. It was the most dehumanizing process I have ever experienced. I was forced to open every page of my life to be scrutinized by total strangers, begging them to believe I was sick.
One of many disadvantages to autoimmune polyglandular syndrome (APS type 1), an extremely rare disease, is nobody has heard of it, nor do they have any basis upon which to make any decisions.
I have already fought this battle time and again with family, friends and doctors. When it takes an average of seven years to receive a proper diagnosis, you tire of the constant need to prove yourself.
Sometimes the worst part of having a rare, chronic illness isn’t the endless doctors’ appointments, missing important events, feeling like death, or even the knowledge that it will never end.
There are days when you simply need validation, the compassion and understanding of others — whether they be family, friends, doctors or bureaucrats. When that doesn’t occur, you are expected to reach deep down into your already exhausted soul and extract a hefty dose of strength and continue to fight. Unfortunately, you may be too tired to pick yourself up and battle those external enemies, because you have spent all your energy on the war raging inside your own body.
I have wielded my sword for many years on my own behalf, and I no longer have the will to even pick it up against someone else. I vow to be the best person I can be, a warrior for and against myself, but I refuse to ask for or expect validation. I have been stoic; today I allow myself to be content with what and who I have, without mourning what I don’t. I am fortunate to have a supportive husband, a beautiful daughter and good friends.
I know the path I’ve traveled, and only I can choose the road I continue down. I will forge an alternate route, and at the end of my journey, I will know beyond any doubt I was the one who accomplished what I did, with the love and understanding of my own village.
The very same government that funds the National Institute of Health (NIH), where I am treated, may have determined I am not disabled, but I know better. I no longer need nor want their validation.
It is now entirely up to me, and I will not waste anymore precious energy fighting an impossible enemy. Our system is broken, and too many of us fall through its cracks.
It took more emotional effort to attempt to prove a negative –not being able to work — than it did to accept my illness and its limitations. That irony is not lost on me.
I have been forced to do so much on my own; I will simply add this to my list.
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Author: Renee D Webb