The Daily Price of Patient Advocacy
8 February 2025 The Daily Price of Patient Advocacy Dancing with My Demons to Help Others Find Their Way Every morning, I open my laptop and willing
8 February 2025 The Daily Price of Patient Advocacy Dancing with My Demons to Help Others Find Their Way
Every morning, I open my laptop and willingly walk into a minefield of triggers. My notifications are filled with stories of medical trauma, systemic failures, and chronic pain - echoes of my own journey that I've chosen to face daily as a patient advocate. It's like volunteering to reopen healing wounds, knowing they'll bleed again, hoping the blood trail will help others find their path.
The truth? Some days, reading another story about medical gaslighting sends me spiraling back to those dark moments in emergency rooms, fighting to be believed while my body was screaming in pain. Each PowerPoint slide I create about accessibility barriers forces me to relive countless moments of exclusion and frustration. Every presentation about the impact of chronic illness on tech careers reopens the chapter of my life where I watched my carefully planned future crumble.
Nobody tells you about the emotional hangover that comes after sharing your trauma professionally. There's no manual for managing the flood of memories that crash through your carefully constructed walls when you're trying to educate others about patient rights. It's like being a professional wound-opener, except the wounds are your own, and sometimes they take days to stop bleeding.
The cruel irony is that the very experiences that make me effective at this work are the ones I'm desperately trying to heal from. Each time I share my story, I'm essentially trading pieces of my mental health for the greater good. It's a transaction I willingly make, but the cost is real and mounting.
Some nights, after a day of advocacy work, I find myself emotionally drained, curled up in bed, trying to put myself back together. The weight of carrying not just my own trauma but absorbing others' similar experiences feels like drowning in a sea of collective pain. Yet tomorrow, I'll wake up and do it all again because so
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