The Fine, But Not Fine Podcast

Inside Rare Disease Week: Taking Advocacy to Capitol Hill (Part 2), Ep. 30

In Part 2 of my Rare Disease Week experience, I take you inside what it’s actually like meeting with lawmakers and their staff on Capitol Hill. I talk about how patient stories influence policy, how advocacy conversations unfold, and why showing up matters for the rare disease community.

Inside Rare Disease Week: A Patient Advocate on Capitol Hill (Part 1), Ep. 29

I just returned from Rare Disease Week in Washington, DC, where patients, caregivers, and advocates come together to push for change in the healthcare system. In this episode, I share what federal advocacy actually looks like—from packed briefing rooms to meetings on Capitol Hill—and why these conversations matter so much for people living with rare diseases. I talk about what surprised me, what I learned, and why patient voices are essential in shaping healthcare policy.

Going to DC for Rare Disease Week - Ep. 28

This episode is the “before.” Before I head to Washington, DC for Rare Disease Week on Capitol Hill, I share why I said yes, how I’ve prepared, and what I’ll be advocating for as a rare disease patient. We talk about insurance denials, the Protect Rare Act, and how advocacy can look different for each of us—at the national, state, or local level.

One Year Anniversary of Fine, But Not Fine - Ep. 27

One year into Fine, But Not Fine, I’m reflecting on why I started this podcast, what I planned for, and what surprised me along the way. This episode isn’t a highlight reel—it’s an honest look at living with chronic illness inside a healthcare and insurance system that asks too much of patients. I talk about anger, advocacy, learning to live with uncertainty, and the quiet truth that even when things are hard, life keeps on living.

The First Time Cancer Interrupted My Job - Ep. 26

In this episode, I share a day that looked fine on the outside—but quietly changed something in me. A cancer treatment and a work crisis collided, and for the first time in ten years, I couldn’t keep my illness and my job in separate lanes. Nothing broke, but the fear did. This is an honest reflection on capacity versus commitment, the invisible stakes of health and work, and what it feels like when the margin you depend on suddenly disappears. There’s no takeaway—just the truth of sitting with it.