More than a label

I wrote this for anyone who is going through the same diagnostic dilemma which I did for 18 years. Twenty years ago they gave it a name A name that I thought was meant to remain “Polymyositis,” neat and clean But nothing about me fit in between Bloodwork whispers, biopsies speak Patterns emerging they didn’t see What they called it was just a start A blurry map of a breaking heart Now my patience is wearing thin Was I ever where they said I’d been? So do we keep the name, or let it go? Was it ever real, or just all we could know? If the science moves on, where do I stand— A footnote lost in a changing plan? IMNM, IBM, ASyS, is it me? But no one rewrites what they wrote on me If polymyositis fades away, Do I finally exist—or just drift astray? New papers say what I’ve felt for years Different pathways, different fears Autoantibodies draw the lines Between the truths and the old designs But codes stay frozen, charts unchanged Doctors inherit what’s misarranged A label passed like a quiet mistake While better names are theirs to take If knowledge grows but systems stall Who answers when we fall? So do we keep the name, or let it go? Was it ever real, or just all we could know? If the science moves on, where do I stand— A footnote lost in a changing plan? IMNM, IBM, ASyS, is it me? But no one rewrites what they wrote on me If polymyositis fades away, Do I finally exist—or just drift astray? I am not a relic of outdated lines Not a placeholder for older times I am data, I am change, I am proof That truth evolves beyond its youth Say it clearly, say it right Name the disease we’re learning to fight Don’t leave us stranded between what’s known And what the system has outgrown Let the old name rest, let it be replaced With something honest, something faced If we’ve learned enough to redraw the chart Then start again—don’t tear it apart IMNM, IBM, ASys—let it be Just give the right name to me And if polymyositis slips away, Let it take the doubt with it someday I’m still here, even if the name is gone More than a label I leaned upon Call it progress, call it grace— Just don’t erase me in its place