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In the quiet turmoil of each day
Living with CRPS and Advanced Wet Macular Degeneration: A Journey Through Unyielding Pain and Loss
I live every day burdened by not one, but two life-altering battles. The relentless agony of CRPS—a disease that followed a botched surgery and irrevocably altered my course—remains a constant reminder of how quickly my world can break apart. Unlike type I, which can strike without warning, my type II carries with it the indelible evidence of past trauma, a wound that refuses to heal.
The toll of CRPS goes far beyond physical torment. I have lost my job, my home, and the relationships that once anchored me—my wife and children have gradually withdrawn, leaving me in isolation and despair. Often dubbed “the suicide disease,” CRPS claims its nickname through staggering realities: patients face a nearly five-fold increase in suicide risk, with some studies pointing to roughly one suicide for every 1,800 individuals. In my darkest moments—especially during extreme flares—the thought of ending it all crosses my mind, an echo of the silent, shared struggle that countless others endure.
As if the physical pain weren’t enough, I now fight another battle: the creeping devastation of advanced wet macular degeneration. My vision, once a vibrant window to the world, is dimming and distorting before my eyes. The subtle details of a loved one’s smile, the vivid hues of a sunset—all are fading into a blur of shadows. This loss of sight forces me to navigate a world that is increasingly unrecognizable, adding another layer of isolation and fear to an already fragile existence.
In my interactions, I often pretend that I am not in pain. When someone I truly value—someone whose laughter and warmth have the remarkable power to momentarily lift my spirits—asks how I’m doing, I hide both the searing pain in my body and the despair in my eyes caused by my vision loss. I do this in a desperate effort to shield them from constant pity, to allow a glimmer of normalcy in our conversation. In truth, it’s their presence that soothes my emotional exhaustion, providing a brief escape from the never-ending realities of a progressive, incurable disease.
Starting new relationships or forging friendships now comes with the burden of explaining a complex dual narrative: one of relentless physical agony and another of profound, encroaching darkness. The vulnerability required is immense, and all too often, the well-meaning yet misguided advice—that I simply need to try harder—feels like a dismissal of the intricate and unresolvable challenges we face. Such comments, coupled with a false sense of pity, do nothing to heal the wounds or slow the progression of either CRPS or macular degeneration.
I make these posts not just to vent or complain but to raise awareness about two very rare and persistently misunderstood conditions. Far too many medical professionals have little working knowledge of CRPS or the intricacies of advanced wet macular degeneration. As a result, patients like me are left navigating a treatment landscape where expert guidance is scarce and misconceptions run rampant. By sharing my story, I hope to illuminate the harsh realities that define my daily existence—and the existence of many others—urging both the medical community and the wider public to foster a deeper understanding and more compassionate support.
In the quiet turmoil of each day, I cling to the fleeting moments of connection—the laughter of a friend, the warmth of shared memories, and the unspoken support that reminds me there is still life beyond the pain and fading images. Though my body and vision may continue to deteriorate, these genuine connections are invaluable in softening the harsh edges of a future that all too often feels grim.
03/29/2025
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