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. In this first episode, I share my story, why I started this podcast, and what Fine, But Not Fine is all about. We’ll talk about the realities of life with a rare disease, from insurance battles to career challenges, and why saying “I’m fine” doesn’t always mean we are. If you’ve ever felt unseen in your healthcare journey, this podcast is for you. Let’s talk, vent, and figure it out together.
Fine, But Not Fine – Introduction, Ep. 1 – The Fine, But Not Fine Podcast
Transcript
Welcome to Fine, But Not Fine
You look fine, but you’re not fine, and that’s exactly what we’re here to talk about. Welcome to Fine, But Not Fine, the podcast about navigating rare disease, healthcare battles, and the messy reality of chronic illness. I’m Kelly Paul, and I’ve been living with Mycosis Fungoide since 2015. This is a space for real talk, real experiences, and practical advice, because surviving is one thing, but figuring out how to actually live, that’s the hard part.
Why I Started this Podcast
Hey everyone, and welcome to the very first episode of Fine, But Not Fine. I’m Kelly Paul, and I’m excited to finally be sitting here recording this. But I’m doing it because I know firsthand how isolating, frustrating and overwhelming it can be to navigate life with a rare disease. If that’s you, if you’ve ever felt like you’re constantly fighting for care, struggling for insurance, or wondering how your health will impact your career, then you’re in the right place. This podcast is for you.
The Call That Changed Everything: My Diagnosis with Mycosis Fungoides
So let me take you back to the year 2015. My husband was out of town, and I was home alone when my doctor calle. It was a Thursday evening at 6 pm, and I saw my doctor’s number flash up on my screen. And you know what I did? I ignored it. I knew deep down that whatever was coming was not good news, and I just wasn’t ready to hear it. I told myself, I’ll deal with it later. But of course, later came, whether I was ready or not.
The next time my doctor called, it was Friday morning, right before I was supposed to walk into a critical work meeting, which I did attend, by the way. I had two choices, send it to voicemail again and go into the meeting like nothing had changed, or answer it and face whatever this was. I picked up.
And let me tell you, my doctor was amazing. He walked me through everything. Explained that I had Mycosis Fungoides, a form of cutaneous T-cell lymphoma. He told me what it was, what it wasn’t, what my next steps were, and likely how things would progress over the years. And he said something that really, really stuck with me, and I’m paraphrasing, but he said, I know you won’t remember half of what I’m telling you right now, so I’m going to call you back on Monday after you’ve had time to sit with this, and you can ask me all the questions that have come into your mind.
Sticky Notes and Scattered Thoughts: The First Moments of Processing a Rare, Incurable Disease
And he was right. I didn’t remember most of it, but what I did do was grab the closest thing I could find sticky notes, and started writing, and I still have those notes today, messy, scattered thoughts from the moment my life changed. Questions I didn’t even understand yet, a list of things I thought I needed to do, but had no idea how to begin.
Those sticky notes were my first attempt at processing what it meant to have a rare and incurable disease. Over the years, I’ve learned so much, often the hard way, about navigating healthcare, dealing with insurance, and balancing a career while managing a chronic illness.
What I’ve Faced Since That Day: Insurance Denials, Medical Mistrust, and Fighting for Care
I have fought prior authorization, had claims denied, dealt with doctors who did not take me seriously, and had to make some really difficult decisions about my health. And I know I am not alone.
You are Not Alone
That is why I started this podcast because I wish I had someone to guide me through all of this when I was first diagnosed, and I want to share what I have learned to help others feel less alone, and talk about the things we don’t always hear enough about, like how rare diseases impact work, relationships, finances and mental health.
What You Can Expect From This Podcast: Real Talk on Healthcare, Insurance, Work, Mental Health, and Advocacy
So what can you expect from this podcast? Well, it’s going to be real, honest, sometimes a little raw. I’ll be covering topics such as how to advocate for yourself in the healthcare system, dealing with insurance denials and prior authorizations, navigating career growth with a rare disease. Should you disclose? What about accommodations?, The mental and emotional side of living with an incurable illness, and most importantly, how to turn our struggles into something powerful: advocacy, awareness, and change.
Most episodes will be just me sharing my experiences and breaking things down in a way that’s practical and actionable. And I’ll also bring in occasional guests who can add their perspectives.
Subscribe, Share, and Help Grow the Conversation
Before I wrap up this first episode, I just want to say, if you’re listening to this and you have a rare disease or you love someone who does, you are not alone. I see you. I understand. And this space? It’s for us.
If you found any of this relatable, I’d love for you to subscribe so you don’t miss future episodes. If there’s a specific topic you want me to cover, let me know. And if you know someone who might find this podcast helpful, please share it with them. I’ll see you next time on a fine but not fine.
Thanks for listening to Fine, But Not Fine. If this episode resonated with you, subscribe so you don’t miss what’s next. And if you’ve got a story, question, or just need to vent, reach out. I’d love to hear from you. Until next time, take care and keep on going.