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 someone needs to speak up, someone needs to fight, someone needs to show others they're not alone.

The hardest part? Maintaining professional composure while discussing deeply personal trauma. "Here's how the healthcare system failed me, packaged neatly into a 30-minute presentation with actionable takeaways." Meanwhile, my heart is racing, and my body is remembering every single moment of that failure in vivid detail.

I've learned to build recovery time into my schedule, knowing that certain types of advocacy work will require emotional recuperation. It's like planning for a hangover before you even take the first drink. Some days, the price feels too high - the flashbacks too vivid, the emotional toll too heavy. But then I get that one message from someone saying "your words helped me feel seen" and I remember why I keep doing this.

The truth is, every article I write, every speech I give, every panel I sit on comes with a side order of trauma exposure. It's not just about sharing information - it's about repeatedly confronting my own demons so others might better understand their own. Some days, I'm not sure who's helping whom anymore.

But here's what keeps me going: every time I share my story, every time I expose these wounds, I'm also reclaiming my narrative. Yes, it hurts. Yes, it costs me. Yes, sometimes I need to step back and tend to my own healing. But through this work, through this willing confrontation with my own trauma, I'm turning my pain into purpose.

So I'll keep paying this price, keep dancing with these demons, keep opening these wounds - but I'll also keep setting boundaries, keep acknowledging the cost, and keep making space for my own healing. Because maybe that's the most important advocacy message of all: that it's okay to be both a helper and someone who still needs help, both a guide and someone still finding their way.

After all, some prices are worth paying, even when they hurt like hell.

Roi Shternin is a reader-supported publication.

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