The pain rips and it sears and it rapes my marrow. Occasionally I will forget what it is, how severely it affects me, how much it kills all stamina I have for life. It is not a mere headache or inconvienience, no it is my life, the ruler of my body. I don’t have enough evil in my body to wish this for my worst enemy.
This does not only attack your body, it attacks your psyche it makes you question your sanity and your life. I wonder when I’m not in pain if I’m just making this up, if I perpetuate something that’s really just an insignificant problem, but then I remember it by the cold skin and the sharp jabs of constant pain in my joints, and the rough, scraping pain in the very core of my bones. Some doctors say that a way to know if a patient is faking is if they are too specific in their descriptions about pain, I say that’s bullshit. I know my body I know my pain, it takes hours and hours and sometimes days out of my life, so I know how it really feels, I know the perfect description of this horrible condition. I can’t fake that.

I try to listen to music, to breathe deeply and calmly, to pretend it isn’t really there, to watch Family Guy episodes on my mp3 player, but all of these attempts to distract me are just that; attempts. It never goes away, not on it’s own, it requires milligrams upon milligrams of strong narcotics to erradicate the worst of it, but it doesn’t go away.

I would kill to just have arthritis. I would kill to just have rickets. I would kill to have a bad back or a sprained ankle or a broken arm. I wish I just had colds and the flu. I don’t and I won’t, I think I might always have this condition. Does that frighten me? Absolutely. How am I going to take care of children with this debilitating disease? Will I be able to? I don’t even want to know these answers; they’re too scary.

I am jealous of those with cancer. YES I SAID IT. I know I could be flooded with angry comments from survivors and friends of survivors of breast and testicular and brain and lung cancers, but it is the truth. I envy the diagnosis. I want something palpable, something real, something visible. I want to lose my hair, to be gaunt and tremble, just so SOMEBODY KNOWS I AM HURTING. So somebody knows I am real, and my pain is real, and my struggle is very, very real.