Familial Mediterranean Fever - A life in intervals.
There's a rhythm to my life, but it's not the kind most people know. It isn't marked by work schedules or weekend plans. It's measured in flares, unexpected, unforgiving and inescapable.
I was nine when I was diagnosed with Familial Mediterranean Fever (FMF). Back then, I didn't fully grasp what it meant. I only knew that pain ruled my life. My chest and stomach felt like they were being squeezed from the inside out, the kind of pain that made breathing a conscious effort and sleeping a distant dream. The doctors prescribed colchicine assuring me it would help. And maybe it did, but never enough.
For years the attacks followed a relentless pattern. Three to five days of agony. A brief moment of peace. Then it would start all over again.
By 19, my chest flares finally eased, but my lower abdomen became the new battleground, switching sides unpredictably, never letting me forget.
At 22 the pain escalated beyond anything I had experienced before. It wasn't just severe; it was unbearable. Hospitals became a routine stop, not because I wanted to be there, but because I had no choice. I couldn't breathe through the pain anymore. Every few months I found myself in a hospital bed, hooked up to an IV, waiting for relief that never came fast enough.
For over a decade I played by FMF's rules, pushing through the pain, adjusting my life around the flares, and trying to pretend that this was normal. By 35, the attacks slowed to once every three months, but they hit harder than ever, knocking me down for days at a time. The cycle never stopped, it only changed its pace.
Then at 40, something shifted. A new specialist, a new test, a new revelation. I carried the Met694Val (M694V) mutation, the most severe form of FMF.
No wonder colchicine had never been enough. No wonder the pain had ruled my life for so long. That's when they introduced me to a biologic. And just like that the rhythm of my life changed. Now at 43 the flares are rare. Not gone, but manageable. The pain that once dictated my every move has faded into the background. I still have bad days but they don't define me anymore.
But FMF leaves scars beyond the physical.
I've lost time, years spent recovering from attacks that stole days, weeks, months. I've lost friendships, people who drifted away when I became "too much". I've endured unsolicited advice, the endless suggestions about diet, exercise, or miracle cures, as if hadn't already tried everything.
But what I haven't lost is my ability to adapt. FMF will always be a part of me but it no longer owns me. My life isn't built around flares anymore, it's built around moments. Some are quiet, some are painful, but all of them are mine. And for now, that's enough.
Nabil, Australia, Familial Mediterranean Fever (FMF)
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