I started this poem several months ago before an admission, when I was in extreme agony and I saved at on my computer, but never had a chance to finish it. While going through files on my computer, I came across this piece and I figured I might as well finish it. It is a vent of sorts in some parts of it.
If only you knew what it is like to be in so much pain that sometimes you lay in bed at night praying for God to end your pain.
If only you knew how hard I try to conceal my pain and illness; to look like a typical young adult, but still be known as the “sick girl” anyway.
If only you knew of the self-consciousness that floods my typically very confident self when I am given a look of sheer pity, disgust, ridicule, etc.
If only you knew how much it hurt to have friends try to keep me from going to a conference with them, because they were afraid that I would end up in the ER. The lack of trust in me and my decision making abilities was extremely disheartening.
If only you knew how hard I have to push myself to take nasty medications and endure more pain to try and eliminate pain.
If only you knew just how tired I am of fighting. Of taking handfuls of medications day in and day out. Being poked and prodded.
If only you knew how emotionally difficult it was for me to apply for a handicap placard. Seeing the word “Permanent” on the placard was just another reminder that this battle is not a sprint, but rather ultra-marathon. It is even harder to use it when I know I need it.
If only you knew the challenges of feeling like you are walking on a bed of coals while being stabbed, crushed, and frozen. Being able to walk while in excruciating pain is a skills, but walking without pain is a great blessing.
If only you knew how I much I wish I could escape from my shattered body, as I look back on the days when pain wasn’t forever. I wish I could go back to my former self. The girl that didn’t have to worry about the consequences of doing everyday tasks or hanging out with friends. The girl that could run like the wind whenever she pleased and dreamed of being a great basketball player. The girl who didn’t have to watch her hair fall out in clumps and who didn’t have to hear the small screams of children or the shocked eyes of doctors and nurses when her legs turned.
So the next time you volunteer to take my pain from me, please remember this. My pain is like nothing you could ever possibly imagine. Because I know this, I’d never let you take this pain. Not even for five minutes. No one could last a lifetime in this body. A lifetime of fear of what is going to malfunction next because something is always malfunctioning. I scream on this rollercoaster of pain that no one can seem to get me off. The emergency brakes have long since broke. Even if you think you could bear it, I’m here to tell you that you can’t, because truly even the people with the disease can’t stand it. No one can. If only you knew.
I am a 20 year old junior at the college of my dreams. I am studying Emergency Medicine and Communication Rhetoric and minoring in the Administration of Justice and National Preparedness and Emergency Management certificate. At some point, I want to go and get my paramedic certification when my health allows. I have several chronic illnesses and this blog and website serves as a place for me to share my journey fighting CRPS and my other conditions. I hope that this blog can also serve as an outlet for raising awareness for rare diseases. Thanks for reading and I hope you enjoy! Feel free to comment; I'd love to know what you think!