You ask me that infamous question…”What’s it like living with a rare disorder?”
But, do you really want to know?
You don’t really want to know what it was like to be the kid who had six surgeries, endless doctors appointments, was bullied throughout school, or what it was like to lose my eyesight in high school and the ordeal that followed in order to regain it back. What it was like to think back and ponder the fact that I almost didn’t make it to my high school graduation. That two months before those honor cords were placed around my neck, I attempted to end my life.
You don’t really want to know what it’s like to have to unwrap and rewrap wounds when hopping into the shower, a process that takes about an hour from start to finish every morning.
You don’t really want to know what it feels like when a bandage slips causing the gauze to stick to the wound, what it feels like to rip it off in order to redo the bandage.
You don’t really want to know how much blood has escaped my veins or that my body is so accustomed to the physical pain that my tolerance for it is much too high.
You don’t really want to know what it feels like to be stared at as you’re going about your business grocery shopping. How others make snarky or belittling comments under their breath, they think they’re being sneaky, but my sonar ears hear every word.
You don’t really want to know how much energy it takes to make sure those ignorant comments just ping right off of my bulletproof exterior, or how many scars are on my tongue from biting back my replies.
You don’t really want to know how much creativity I drill into everyday skills so that I can independently live my every day life.
You don’t really want to know what type of mental damage occurs when you’re labeled as physically damaged. The dark thoughts that eat at your mind, the restraint to not take your own life away from your family and friends. How hard it truly is to hold back the midnight tears, to push down all of that social negative shit.
You don’t really want to know what it’s like trying to breakdown your walls and remain genuine in a world that breathes out their negative vibes.
You don’t really want to know what it’s like to see couples in love and know that it doesn’t matter how much you dream of being in a healthy, genuinely loving relationship, in the end it is just a dream. That the storyline of Love And Other Drugs or Me & You is just Hollywood, not inspiration to keep searching for your soulmate. To hold onto the hopes that there is a guy out there that will look right past the outer exterior, he’ll see me for me, a mere wish placed upon a penny.
You don’t really want to know what 24 hours of living my life consists of. You don’t want to know why I keep fighting, why I want to help others. You don’t really want to know the real me and that’s ok…
But, don’t falsely act like you want to know, that you actually care. That’s just wrong.
So, before you ask me what it’s like living with a rare disorder, make sure you really want to know.
Make no mistake, I live in a prison
That I built myself, it is my religion
And they say that I am the sick boy
Easy to say, when you don’t take the risk, boy
Welcome to the narcissism
Where we’re united under our indifference… -The Chainsmokers