The Truths of a Chronically Ill Individual
I have dreams, though they may sound simple. I have dreams of laying in a vibrant field of grass with the warmth of the sun beaming onto my face. I have dreams of walking to the store without writing the list of the things I need or reading it over and over in the back of my mind so that I don’t forget. I have dreams of seeing the world with a steady vision—without the static or blur filtering over everything I see. I have dreams of living a life in which I feel truly alive.
You can’t see how desperately I want to go back to sleep, even though I know no amount of sleep could ever make me feel rested—-but I get up anyway and try to make the best of my day. Even if that means simply just getting up to shower, or even just survive the day.
You can’t see how hard I struggle just to get more than a bite of my breakfast in the morning. Nobody sees that more than half the time I have to take a pill to successfully eat a full meal.
You can’t see how my legs shake as I try to go up or down a set of stairs. Or how my hands consistently tremor, making it impossible to do many things without struggling.
You can’t see the way I rely on my bed or whatever is closest to me to help me get dressed every day.
You can’t feel the tightness in my chest or knees, or the fire blazing down my spine.
You can’t see through the distorted lens of my own blurry vision
You don’t know how many times I’ve watched the clock’s pendulum sway back and forth while I remain feeling numb and empty laying on my couch—how it taunts me and reminds me that life will continue to move on without me.
You don’t know the way I struggle to string together my own thoughts into words in simple conversation. Or the frustration of having my own brain fail me so frequently.
You can’t feel the full-body hangovers after doing something that I knew would push me too far-—because I had no choice.
You don’t know how I constantly feel like I’m rotting from the inside out, like there is poison spewing out of my organs.
You don’t know how sometimes in the back of my mind, I wonder if this is what it feels like before you die. How I wonder if I’m even going to make it to grow old with my fiancé.
You don’t know how most days I wake up with nothing to look forward to
You don’t know how I experience anxiety every day from the idea that others are judging every choice that I make.
These are the truths of a chronically ill individual. For those of you who struggle with illness, know that the people who judge you have never been put in a position where they have to do whatever it takes just to survive every day.
I may be sick but I still have dreams—-dreams that I am actively working toward at my own pace, because I have no choice. They may seem small, or maybe it may seem like I’m not trying that hard, but maybe that’s just because you’re not looking close enough.
Do you have a question about axial spondyloarthritis you have been trying to get answered?