The Fine, But Not Fine Podcast
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. 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. Resources: Cutaneous Lymphoma Foundation (https://www.clfoundation.org), International Society for Cutaneous Lymphoma (https://cutaneouslymphoma.org), Lymphoma Research Foundation (lymphoma.org), National Organization for Rare Diseases (rarediseases.org).
Episodes
Rare lymphomas are hard to build an awareness campaign around — and a global awareness day does matter. Why one day of visibility does what three thousand patients a year can't do alone.
This episode is about telling clients, partners, and vendors about a cancer diagnosis. I share how I read someone before I decide, what I actually say, and why I still wonder whether I say too much.
Most people with mycosis fungoides spend 2–6 years being told it’s “just eczema.” I wasn’t one of them. And it wasn’t because I got biopsied early (I did, and it was wrong). I got diagnosed in 4–6 months because I accidentally landed with a dermatologist who knew what to look for, chose the right biopsy site, and knew that early biopsies often can’t confirm it. In this episode, I walk...
A patch showed up on my lower eyelid practically overnight. Itchy, red, scaly — and it could have been almost anything.
Having mycosis fungoides doesn't make you immune to ordinary skin problems. It just turns every ordinary skin problem into a question. And answering that q...
Most hard things come with a finish line — six rounds, twelve weeks, "get through this and you're on the other side." I don't get that sentence. My treatment doesn't end; it just continues, for as long as my body needs it. This episode is about treatment fatigue, not the kind where one appointment is brutal, but the kind where the hard part is the forever of it. And how I've learned to carry that without letting it stop me.
When you treat a cancer that can't be cured, you don't just manage the disease, you manage what the treatment does to the rest of you. My liver numbers climbed high enough that I had to come off my medication entirely. This episode is the cascade that followed: the referral, months of waiting, vials of blood, a FibroScan, and the relief of an answer.
150 in-office treatment appointments in a single year. Three days a week, every week, driving to another city because there's no NBUVB light where I live — or where I work. In this episode, I'm talking about what treatment actually costs: the miles, the time, the scheduling, the money. And the harder question underneath all of it — whose job actually lets them do this? Because not everyone has the flexibility I do. And ...
What does it actually look like to walk into a state legislature and fight for rare disease patients? This episode, I share what I learned from two days advocating at the NC Legislature with the Everylife Foundation for Rare Diseases — what surprised me about how state lawmakers think, why the knowledge gap isn't what I expected, and what a single staffer's comment about a stack of one-pagers taught me about what advocacy act...
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.
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 patie...
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 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 har...
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 depen...
Managing multiple doctors with a rare disease or chronic illness is complicated, confusing, and honestly, exhausting. In this episode, I talk about what it’s really like to juggle doctors who don’t talk to each other — from conflicting advice and duplicate lab tests to the emotional toll of telling your story over and over again. I share the strategies that help me stay (somewhat) sane, like keeping my own records...
The holidays don’t have to be perfect to be joyful, especially when you're living with a rare disease or chronic illness. In this episode, I share how I’ve learned to let go of stress, overspending, and obligation — from going out for Thanksgiving dinner to skipping holiday travel — and focus instead on peace, connection, and real joy.
In this episode, I open up about rare disease fatigue—physical exhaustion from treatment, the emotional weight of constant advocacy, and the endless admin grind of managing care. I share what triggers burnout, how I cope through energy management, creativity, and support, and why hitting a wall isn’t failure—it’s a signal to rest and rebuild.
In this episode, I explore what it really means to change jobs when you’re living with a chronic illness. For me, it’s not just about a new role—it’s about whether my health and my coverage will hold steady. I talk through the tough parts and I share how to plan ahead so you don’t get caught in a coverage gap, and the emotional weight of navigating it all. I also walk through my own solution—a jo...
Traveling with a rare disease isn’t simple—especially when your medication has to stay cold. In this episode, I share the real challenges of flying with Mycosis Fungoides, from packing syringes and sharps containers to navigating TSA rules. I talk about the hotel fridge disaster that forced me to upgrade to a TSA-approved cooler and why planning ahead is the key to stress-free travel. Most of all, I remind you: don&rsqu...
In this episode, I share what volunteering has taught me while living with Mycosis Fungoides. From the General Federation of Women’s Clubs to the Cutaneous Lymphoma Foundation, I’ve seen how giving back builds connection, skills, and visibility—but only if you protect your energy. I talk about choosing roles that lift you up, setting boundaries, and how volunteering reminds me I’m more than my illness.
In this episode, I share a recent experience that was far more than “scanxiety.” After a routine check-in revealed rapidly spreading skin patches, extreme fatigue, drenching sweats, and liver numbers that tripled in four weeks, my doctor paused my treatment and ordered a PET/CT scan to see if my Mycosis Fungoides had spread internally.
I walk you through the fear that set in—fear that felt different from worry&mda...
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