What disease isn’t, right? I know. But, sarcoidosis is the devil I happen to know and know intimately. This particular devil is the one I am saddled with. I’ve come to know all its black magic and evil witchery. I’ve come to anticipate its tricks and sleight of hand.
Why do I call this disease a devil, full of dubious undeniable deception? An excellent question but one not easily answered as this disease is a great mimicker, a shady character, prankster, a liar and a faker, fooling me to believe in the wildly unpredictable promise of easy recovery, a happy ending.
Often masking itself as cancer or MS or some other terrifying disease, I am left feeling a false sense of relief that it’s only sarcoidosis. Even many doctors are fooled by this demon destroyer, knowing so little about it and believing the hype that high doses of steroids will exorcise it from the body. High doses of steroids, an easy fix…until it too begins to decay my body and my soul from the inside out. And when steroids don’t work, how about some chemo therapy. Don’t worry, it’s a low dose, they say. It won’t hurt you, they say. Funny though, how they send me for blood work every six weeks, just to make sure my liver doesn’t cease to function. Funny how ghastly I feel on a low dose of chemo therapy.
Even the hope of remission is a lie. This disease may ebb, but the ravages it leaves in its wake are sometimes as bad as the disease itself…nerve damage, brain fog, weakness, unyielding joint and bone pain, scarred and failing organs. One way or another this disease does not leave. It has marked me for life. I cannot escape its taunting evil grasp.
Soon I learn in new and annoying ways, that this devil is as cruel and sadistic as they come. This devil hides itself so deeply inside me, that no one notices it. No one can see it or feel it but me. “You don’t look sick” becomes a common comment, one so familiar that even I begin to doubt myself, feeling stripped of my sanity because my inside and outside no longer match.
This disease is the devil I know. I’ve become accustom to its pranks, the way it lulls me into believing I am healing, only to turn around and knock me down with a flare so powerful, the Hoover dam could not stop it from flooding my body. Oh, this is the devil I know because right after a good day, I will have a wretched one. I will have a day so bad, I wish I would die. Yet, this disease is so evil that it has taught me how to do this with a smile on face. It has made me a master of its disguises. I have become its puppet. A faker too.
I hate this confounding, misleading, disruptive devil with every fiber of my being. But, it is the devil I have had to learn to tame. It is the devil I have had to learn to co-exist with, a devil not of my own making but a devil I know will never leave me.
It is a devil I must accept.