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.
Where to Listen
-
The Hidden Price Tag: Chronic Illness and the Financial Cost – Ep. 11
On this episode of Fine, But Not Fine, I share what it really costs to live with Mycosis Fungoides — a rare lymphoma. I spend at least $3,500 a year out-of-pocket on prescriptions and specialist visits, not counting dental, vision, or everyday medications. I dive into the hidden financial and time costs of chronic illness, the challenge of unexpected expenses, and why planning ahead is critical — even when it feels overwhelming.
-
Advice I’d Give My Newly Diagnosed Self – Eps. 10
This podcast episode is a letter to the version of me who had just been diagnosed. She was scared, overwhelmed, Googling way too much, and had no idea what the next year—let alone the rest of her life— was going to be like. Whether you’renewly diagnosed yourself or supporting someone who is, I hope this gives you some grounding and comfort. Because if I could go back, this is what I’d say.
-
Managing Medications: It’s Like a Second Job – Eps. 9
I had no idea how complex medication management was until I had a chronic and rare disease. In this episode, I talk about medication management: keeping track of doses, dealing with pharmacies, ensuring you have the right supplies, and the craziness of the side effects lists.
-
Coping With “You Should try This” Advice – Ep. 8
Ever wondered how to deal with misguided advice and intrusive questions from well-meaning people when dealing with a serious or chronic illness? In this episode, I outline strategies for rejecting bad advice and setting boundaries while maintaining kindness.
-
Prior Authorization: The Health Insurer Bureaucracy Blocking Your Care – Ep. 7
In this podcast episode, I talk about Prior Authorization, what it is, how it works, how insurers use it, and why it is a major hurdle to medical care for rare and chronic disease.
-
My Experience with Narrowband UVB (NBUVB) Light Therapy – Ep. 6
I’m sharing my journey with Narrowband UVB (NBUVB) light therapy—how I started, how I adapted, and how I made it work for me.
-
Rare Disease and Body Image – Ep. 5
In this episode, I explore the relationship between chronic illness, rare disease and body image, particularly how living in a body that doesn’t look or feel the way one wants can impact self-perception.
-
Finding the Right Doctor – Ep. 4
We tackle one of the most critical aspects of managing a rare disease: finding the right doctor. If you’ve ever left an appointment feeling unheard or dismissed, you’re not alone. Not all doctors are created equal, and building the right medical team takes effort.
-
Should You Disclose Your Rare Disease At Work? Ep. 3
In this episode of Fine, But Not Fine, we dive into one of the biggest dilemmas for people with rare and chronic illnesses: Should you tell your employer about your diagnosis? I share my personal experience with disclosure—why I chose to be open about my rare disease, how my work culture made that decision easier, and the benefits and challenges I faced. But this decision isn’t one-size-fits-all. We explore the pros and cons of disclosure, from gaining workplace accommodations and reducing stress to the risks of stigma and privacy concerns. Transcript You look fine, but you’re not fine, and that’s exactly what we’re…
-
What Is Mycosis Fungoides? – Ep. 2
Mycosis Fungoides—it sounds rare because it is. In this episode, I break down what this disease actually is, how it affects the body, and what it’s like to live with a cancer most people have never heard of.
-
Introduction
Living with a rare disease isn’t just about medical appointments and treatments—it’s about navigating a world that doesn’t always understand what you’re going through.
- 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.