By Kambiz Roghanchi
Livingston, New Jersey, February: A frosty gust nipped at my skin, but the real chill crept from within. Crimson tendrils snaked up my arms, an alien map drawn by my own traitorous immune system. These Gottron’s papules, these fevered blossoms of war, were the first whispers of a coup. My body, once a trusted fortress, was under siege, my own defenses turned against me.
The enemy had a name, a cold clinical one—Dermatomyositis.
Doctors, trained to vanquish unseen foes, saw a textbook case. But I saw anarchy, my muscles turned traitorous battlegrounds, my skin painted with the scarlet scars of betrayal. The calendar became a tally of stolen dreams: no more hikes with my boyfriend, no more lazy mornings basking in stolen sunlight.
Before, my immune system was a silent roommate, its workings as hidden as the plumbing behind the walls. Now, it roared with the fury of a dragon, spewing cytokines as fire, my very tissues its fuel. Every morning, the mirror became a battlefield, each rash a fresh skirmish won by the enemy. The bathroom—once a sanctuary—transformed into a war room, where I assessed the damage, a medic surveying the fallen.
Yet, in this crucible, a warrior was forged. I learned the enemy’s language, deciphering the code of my body. I became the cartographer of my own ravaged landscape, charting the treacherous paths of fatigue and pain. Each medication was a precarious truce, each flare-up a declaration of renewed hostilities.
Living with dermatomyositis is not a passive battle; it’s a relentless dance with pain, a constant negotiation with fear. But within this struggle, a fierce resilience blooms. I cherish the good days, the moments of stolen sunlight, the laughter that echoes despite the ache in my muscles. I find solace in the shared stories of fellow warriors, their battles forging a kinship in the trenches of autoimmunity.
This is not a tale of triumph or surrender, but of an ongoing war. A war I fight not just for myself, but for the countless others facing invisible enemies within. For them, I raise my voice, a defiant banner against the tyranny of illness. For them, I fight, a warrior in my own skin, living within the walls of my enemy’s fortress, but never yielding its dominion.
Kambiz Roghanchi, born and raised in New Jersey, was diagnosed with refractory dermatomyositis in 2021. Currently pursuing a degree in social work with a focus on the chronically ill, Kambiz is also an avid poet, finding solace and treatment in writing about his journey with the disease.