Fine, But Not Fine
Hosted by Kelly Paul, who has lived with Mycosis Fungoides (a rare form of Cutaneous T-Cell Lymphoma) since 2015, this podcast dives into the real-life struggles of managing an incurable condition while still trying to live a full, meaningful life.
Fine, But Not Fine is a podcast for anyone navigating the messy, frustrating, and often invisible challenges of rare diseases, chronic illness, and the healthcare system.
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Inside Rare Disease Week: Taking Advocacy to Capitol Hill (Part 2), Ep. 30
I share what it’s like meeting with lawmakers during Rare Disease Week and how patient advocates help move rare disease policy forward on Capitol Hill.
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Inside Rare Disease Week: A Patient Advocate on Capitol Hill (Part 1), Ep. 29
What really happens during Rare Disease Week? I share my experience advocating on Capitol Hill and why patient advocates are vital in shaping rare disease policy.
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Going to DC for Rare Disease Week, Ep. 28
Before heading to DC for Rare Disease Week on Capitol Hill, I share what it means to prepare as a first-time rare disease advocate—why insurance denials matter, what the Protect Rare Act aims to change, and how patients can engage in advocacy at their own pace.
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One Year Anniversary of Fine, But Not Fine
One year into Fine, But Not Fine, I reflect on why I started this podcast, what it’s taught me about living with chronic illness, and the frustration of navigating healthcare and insurance. This episode explores advocacy, honesty, and the reality that life keeps on living—even when nothing feels resolved.
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