About Debra Rafson

I’m a writer, patient advocate, and disabled chronic illness warrior who believes in telling the truth about what it means to live in a body that doesn’t follow the rules. My work explores chronic illness, disability, and the emotional realities of navigating complex medical systems.

My Story

My journey with chronic illness began long before I had the language for it. After years of unexplained symptoms, I was diagnosed with Hypertrophic Cardiomyopathy (HCM), a genetic heart condition that eventually required open heart surgery and an ICD (pacemaker/defibrillator). Accepting that I needed surgery was its own story — one I’m now writing into a memoir.

I was later diagnosed with multiple additional chronic conditions, including Lyme, Osteoporosis, and Sleep Apnea, and became disabled due to an autoimmune sensory neuropathy. I’ve learned a lot in my medical journey that I share in my writing in order to help others going through similar experiences.

Why I Write

I write to make sense of the chaos, to connect with others who feel unseen, and to challenge the cultural narratives around illness and disability. My Substack newsletter, What’s Her Problem?, is where I explore these themes through essays, interviews, opinion pieces, and more.

Advocacy & Leadership

I’m a Discussion Group Leader and Ambassador for the Hypertrophic Cardiomyopathy Association (HCMA), as well as a WomenHeart Champion.

Professional Background

Before writing and patient advocacy, I spent years in theatre production and administration, beginning as a Stage Manager and eventually becoming a Managing Director. I’ve also worked extensively in higher education administration. I bring that organizational rigor and storytelling instinct to everything I do.

Credentials

• Founder, The Open Hearted Advocate LLC
• Co‑founder, Reasonable Accommodations LLC
• HCMA Ambassador & Discussion Group Leader
• WomenHeart Champion
• Harvard Medical School Media and Medicine Certificate Program Alum
• Bachelor of Arts in Spanish Language and Literature
• Master of Science in Arts Administration
• Graduate Certificate in Human Resource Management