I Am Still Here: A Voice from the Rare Side
By Jim Kuhn, a rare warrior living with Sarcoidosis
Living with a rare disease means straddling two worlds: the life I once imagined and the reality I never asked for. For years, I carried a silent pain no one could see, learning to keep moving through an invisible world. Doctors tilted their heads and ran their tests. They handed me uncertainty disguised as reassurance: ‘You are fine.’ But I knew I was anything but ‘fine.’ My body was telling a story no one else could hear—or see.
When the diagnosis finally came, it was both a relief and a heartbreak. At last, my pain had a name—but that name was rare, strange, and terrifyingly lonely. There was no clear treatment plan, no promise of a cure. Rare meant uncharted territory. Rare meant becoming my own advocate, my own researcher, my own warrior.
Some days, I feel strong. I rise above the ache, turn my pain into purpose, and fight for others walking this same path. Other days, I crumble. The pain is heavy, the fatigue is relentless, and the isolation cuts deep.
But even in these hardest and lowest moments, I have learned something powerful: I am still here.
This disease may shape my life, but it does not define me. I have discovered strength I never knew I had. I’ve learned to find small flashes of hope where I once saw none — in a quiet morning when everything hurts, in a message from another patient, in the simple fact that my story still matters.
I am not invisible. I am not broken.
I am rare.
I am resilient.
I am still here.
And for everyone walking this same fragile road — you are still here too.
