I’m Debra Rafson — a writer, patient advocate, and disabled chronic illness warrior. I explore the realities of chronic illness, disability, and navigating complex medical conditions and systems through storytelling, advocacy, and lived experience. I’m also the creator of the Substack newsletter What’s Her Problem? and the author of a memoir (in progress) about my journey with the genetic heart condition Hypertrophic Cardiomyopathy (HCM).

About Me

I believe in the power of storytelling, and I know telling my own stories makes a difference. I write about the messy, meaningful, and often absurd realities of chronic illness and disability. My work blends personal narrative, advocacy, and cultural commentary to help others feel seen in their medical journeys.

What I Write

My Substack newsletter, What’s Her Problem?, tackles issues at the heart of chronic illness and disability through essays, interviews, opinion pieces, and more. The audio version of each issue is available as a podcast, and Interview Series episodes are also available to watch on YouTube. I am available for freelance writing opportunities as well.

Advocacy Work

I’m the founder of The Open Hearted Advocate LLC, where I offer writing, speaking, brand partnership, patient advocacy, and podcast guest services. I advocate for other heart disease patients as a Discussion Group Leader and Ambassador for the Hypertrophic Cardiomyopathy Association (HCMA) and as a WomenHeart Champion.

Professional Background

Before becoming a writer and patient advocate, I spent many years as a theatrical Stage Manager, arts administrator, and higher education professional. I bring that organizational and storytelling background into my advocacy work.

Current Projects

I’m writing a memoir about my Hypertrophic Cardiomyopathy (HCM) diagnosis and the long road to accepting that I needed open heart surgery.