One Year Anniversary of Fine, But Not Fine – Ep. 27
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 hard, life keeps on living.
One Year Anniversary of Fine, But Not Fine – Ep. 27 – The Fine, But Not Fine Podcast
Podcast Transcript
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, health care battles, and the messy reality of chronic illness. I’m Kelly Paul, and I’ve been living with Mycosis Fungoides 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.
Hey, y’all today’s episode marks one full year of Fine, But Not Fine, and I want to thank you all for listening. You know, this podcast didn’t happen by accident. I actually made a plan. I mapped out episodes, I looked at really what I’d already lived through, and realized that I did have more than enough material to fill an entire year. I was determined to do this, not because it felt fun or therapeutic, but because I couldn’t find the conversations I needed when I was diagnosed, and I knew other people were probably looking for them too.
You know, living with a rare disease, it trains you to plan, you plan appointments, you plan treatments, you plan energy, you plan insurance like it’s a second unpaid job. And so planning a podcast made sense to me. It felt like taking back just a tiny bit of control in a system that just doesn’t offer much of it.
Now I thought this podcast would be mostly educational. I thought I’d explain my disease, break down treatments, talk through scans and side effects, and maybe make some of the medical stuff feel a little bit less overwhelming. And I did do that, but pretty quickly I realized something else was shaping almost every episode, and that’s that the hardest parts of living with chronic illness aren’t always about the illness itself. They’re about the systems around it, health care, insurance, employment access. Those systems quietly determine what care we get when we get it, and whether we can afford to keep going.
There were a few moments this year when the tone of this podcast changed, when I could not stay neutral anymore. One of those moments was really that advice to my just diagnosed self, and that episode wasn’t meant to be inspirational. It really came from a place of honesty I didn’t realize I still needed. Because if I could go back and talk to that version of myself, I would not give her optimism. I’d give her permission that, permission to be scared, permission to be angry, permission to stop trying to do illness the right way. And that episode reminded me that what helps most isn’t advice. It’s actual honesty, you know, saying the quiet parts out loud so someone else doesn’t feel broken for thinking them.
Another turning point came when my standard treatment was denied, not experimental, not optional. Standard of care level here, and I was so angry and so done, and I had to take that all the way to the state insurance commissioner to get that insurance denial overturned, which, when you really think about it, is absurd. A patient should not have to escalate care to that level to receive what their doctor has already prescribed, and that experience changed how I talk about insurance, because once you’ve had a fight that hard, it’s impossible to pretend the system is just inefficient or confusing. It is obstructive, and it places the burden squarely on the sick person to push back.
And then there’s a frustration that isn’t tied to just one episode, but it shows up everywhere. Health insurance being expensive, health insurance being inefficient, health insurance being tied to your job, and I am genuinely grateful that my employer pays such a large portion of my monthly premium. I know that is not common, and at the same time, I am completely over a system where access to care depends on whether you can keep working in the same way, at the same pace, without interruption.
Both things can be true. Gratitude does not cancel out frustration and privilege does not erase injustice. Naming that tension out loud matters, because so many people live inside it quietly.
There’s something else I’ve learned this year that doesn’t fit neatly into an episode title, but it’s been here really the whole time, and that’s that life keeps on living, even when you’re in treatment, even when you’re fighting insurance. Or you’re exhausted or scared or angry, life does not pause because you’re dealing with something big. It just doesn’t.
There were days this year where I recorded an episode, closed my laptop and immediately went back into regular life. It could be work, emails, errands, conversations that had nothing to do with cancer or care or coverage, and sometimes that felt grounding, sometimes it felt unfair and sometimes it felt surreal, because you can be escalating a denial to the state insurance commissioner and still have to show up to a meeting the next morning.
You can be advocating at a high level and still need to decide what you’re going to eat for dinner. You can be living with something life altering and also living a life that doesn’t look dramatic from the outside, and that duality is kind of been one of the strange parts of this year. I didn’t stop being a person when I got sick. I didn’t stop wanting things. I didn’t stop living a life alongside all of this. And that matters, especially if you’re listening and feel like your life is supposed to be on hold until you feel better or stronger or more certain It doesn’t work that way. Life keeps on living, and we learn how to live inside that reality one imperfect day at a time.
And somewhere along the way, this podcast stopped being just about information and kind of became about validation, validation that we’re not weak for being exhausted, we’re not dramatic for being angry, and we’re not failing because this is hard.
Making this podcast gave me a place to talk in really full sentences and not symptom summaries, right? It’s a place to name fear, frustration, and fatigue without actually fixing them, and it created connection, real connection, the kind that reminds one you’re not navigating this alone, even when it feels isolating.
And this is no surprise. I didn’t start this podcast to be inspirational. I started it to be useful. Useful to someone who just got diagnosed and feels like the floor dropped out from under them. Useful to the person fighting insurance for the first time or seeing their first denial and not knowing what to do. Useful for the person who is exhausted and wondering, why on earth does this all feel so heavy.
If this podcast helps someone realize their frustration makes sense, their fear is reasonable, and their exhaustion is not a personal failure, then it’s doing exactly what I hoped it would do. That’s where advocacy starts for me. It’s not in perfection, it’s not in polish, it’s in honesty.
A year in I do not feel cured, fixed, or finished. What I feel is clearer, clearer about how broken this system is, clearer about why advocacy is so critical, clearer about the fact that patients should not have to fight this hard just to receive care, and clearer about my voice in all of this. I may not be able to change everything, but I can keep telling the truth about what it costs to live this way while life keeps on living.
So this is one year of Fine, But Not Fine, one year of planning, one year of determination, one year of frustration, clarity, and connection.
If you’re listening and you’re tired, I see you, and if you’re angry, you’re not wrong. And if you’re still here, still living your life alongside all of this that matters, I truly thank you for being here with me.
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.