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.Â
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.
Where to Listen
-
Reading Test Results Before Your Doctor: MyChart, Pathology Reports and the Wait – Ep. 40
Why do test results show up in MyChart before your doctor calls? I share what I’ve learned about pathology reports, patient portals, and handling the wait.
-
FSA Open Enrollment With Cancer: Forecasting My Own Body – Ep. 39
Choosing your FSA amount during open enrollment is harder with a chronic illness or incurable cancer. I have a prognosis for mycosis fungoides, but no timeline. That turns the annual benefits form into a forecast of my own health. This episode covers how I estimate medical expenses, why I fund for a stable year instead of the worst case, and why chronic illness costs get so little community support. Transcript Every year, somewhere around, I don’t know, October, November, I sit at my desk and I open my benefits portal at work, and it, it asks me a question, and…
-
World Lymphoma Day Belongs to the Rare Ones Too – Ep. 38
Transcript Today is September 15th, World Lymphoma Day. At least it is if you’re listening to this podcast on the actual day it drops. And really, roughly about 80,000 people in the United States will be diagnosed with a non-Hodgkin lymphoma this year, and somewhere around 3,000 of them will have the kind that I have, a cutaneous lymphoma, and that works out to, eh, roughly 4%, right? So I am just this minuscule percentage of what today is about, but I show up for it because it’s very important. Now 80,000 people, as I said, is a lot, and…
-
Did I Really Have to Say That? Disclosing a Cancer Diagnosis at Work – Ep. 37
Telling clients about a cancer diagnosis. How I decide who needs to know, what I say, and why I still wonder if it’s too much.
-
Why Mycosis Fungoides Takes Years to Diagnose: What I’ve Learned – Ep. 36
Mycosis fungoides typically takes years to diagnose. Mine took four months. What actually made the difference, and why it isn’t something I can recommend.
-
The Mycosis Fungoides Rule Out – Ep. 35
How do you know if a new spot is mycosis fungoides? My eyelid biopsy, the 7-day pathology wait, and what happens next with cutaneous T-cell lymphoma.
-
Treatment Fatigue: Doing the Hard Thing Forever with No Finish Line – Ep. 34
How do you keep doing treatment when there’s no cure and no finish line? On treatment fatigue, chronic illness, and building a life in the meantime.
-
High Liver Enzymes on Interferon: Why I Had to Stop Treatment
When interferon raised my liver enzymes, I had to stop cancer treatment and see a liver specialist. The waiting, the testing, and getting real answers.
-
150 Appointments: What Rare Disease Treatment Actually Costs, Ep. 32
150 in-office appointments in a single year for rare disease treatment. 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 that matters.
-
Two Days in the Halls of Power – Ep. 31
State legislators know rare disease exists. They don’t know what it costs you to live with it. That’s the gap — and how patients can fill it.
-
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.
-
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.
-
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.
-
One Year Anniversary of Fine, But Not Fine – Ep. 27
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.
-
The First Time Cancer Interrupted My Job – Ep. 26
A candid episode about the day cancer treatment and work collided. No advice, no silver lining—just an honest reflection on capacity, fear, and the invisible stakes of chronic illness.
- Resources
What is Mycosis Fungoides?
Mycosis Fungoides is a rare form of Cutaneous T-Cell Lymphoma (CTCL), a type of cancer that originates in the white blood cells and primarily affects the skin. It’s chronic and currently incurable, but manageable for many patients over a long period of time. I’ve been living with it since 2015, and despite the word “lymphoma,” it looks nothing like what most people picture when they hear “cancer.”
What is Cutaneous T-Cell Lymphoma (CTCL)?
Cutaneous T-Cell Lymphoma is a rare blood cancer where abnormal T-cells — a type of white blood cell — accumulate in the skin. Mycosis Fungoides is the most common form. Because it presents on the skin rather than as a tumor, it’s frequently misdiagnosed for years, often mistaken for eczema or psoriasis. It’s estimated to affect fewer than 3 in 1,000,000 people, which makes it a true rare disease.
Is Mycosis Fungoides curable?
Currently, no. Mycosis Fungoides is considered incurable, but it is treatable and many patients live with it for decades. Treatment focuses on managing symptoms and slowing progression — phototherapy, topical treatments, systemic therapies, and in some cases clinical trials. The goal is a good quality of life, not a countdown. That’s a distinction that took me a long time to make peace with.
What is the Fine, But Not Fine podcast about?
Fine, But Not Fine is a podcast about the real experience of living with a rare disease — not the inspirational highlight reel, but the actual day-to-day: insurance denials, navigating a medical team, the cost of treatment, what happens when your job and your health collide, and how to find moments of joy anyway. I started it because I couldn’t find the honest version of this conversation anywhere, so I decided to have it myself.
Who hosts Fine, But Not Fine?
I’m Kelly Paul — a rare disease patient, advocate, marketer, and the person behind this podcast. I was diagnosed with Mycosis Fungoides in 2015 and have spent the years since learning how to live a full life alongside an incurable illness. I serve on the Board of Directors of the Cutaneous Lymphoma Foundation and have advocated for rare disease patients on Capitol Hill. This podcast is where I put everything I wish I’d known at diagnosis.
Who is this podcast for?
Anyone navigating a rare disease or chronic illness — whether you’re newly diagnosed, years in, supporting someone you love, or working in healthcare and wanting the patient’s honest perspective. You don’t need to have Mycosis Fungoides to find something here. The insurance battles, the exhaustion, the identity shifts, the weird humor that gets you through — those are universal.
How do I listen to Fine, But Not Fine?
The podcast is available on Apple Podcasts, Amazon Music, iHeart Radio, PodBean, and YouTube. You can also listen directly on this site — every episode is posted here with show notes. Subscribe wherever you listen so you don’t miss new episodes.
How do I connect with other rare disease patients?
Start with the organizations that know this space best: the Cutaneous Lymphoma Foundation (clfoundation.org) and the National Organization for Rare Diseases (rarediseases.org) both have community resources. You can also join the Fine, But Not Fine email list — it’s a small but real community of people who get it. And if you’re on social media, find me — I’m not hard to reach and I actually respond.