t’s been ten years since I was diagnosed with Mycosis Fungoides—and no, there hasn’t been a miracle cure or a neat treatment roadmap. In this episode, I’m opening up about what a decade with a rare, chronic illness really looks like. I’m sharing the raw truth: the path is winding, unpredictable, and often lonely.

But I’ve also learned that surviving isn’t enough. You’ve got to find a way to live—loudly, bravely, and with purpose. I talk about the urgent need for better treatments, the painfully slow pace of progress, and why I’ve stepped up as a voice for change. This episode is for anyone who’s ever felt stuck in the waiting room of medicine or invisible in their own story. You’re not alone—and you don’t have to be quiet about it.

Ten Years Later and I'm Still Here – Ep. 18 – The Fine, But Not Fine Podcast

It's been ten years since I was diagnosed with Mycosis Fungoides, and no there hasn't been a miracle cure or a neat treatment roadmap. In this episode, I open up about what a decade with a rare, chronic illness really looks like. I've learned that surviving isn't enough. You've got to find a way to live, loudly, bravely, and with purpose. And it's why I've stepped up as a voice for change.

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.

Ten Years Living with a Rare Diagnosis

Ten years ago, I was given a diagnosis that was difficult to pronounce, 10 years — a decade, that is long enough for a third grader to become a college student, okay, for career to evolve, or, heck even change, for body to change. I certainly know mine has, but it’s not just my skin that’s changed. It’s how I see time treatment and what it means to live with something negative that just doesn’t go away. It’s really, it’s kind of sobering, really.

Then vs. Now: How My Perspective Has Shifted

So I’ve been thinking a lot about then versus now. So then, even though my doctor explained to me how things would go, really, really well, I somehow convinced myself that there was a track, you know, a clear plan, try a treatment, see results, stabilize, it would all line up. Now I know there really is no straight track. It can be a zigzag through hopeful, starts, disappointing stops, adapting and readapting.

Understanding Early Stage Doesn’t Mean Easy

And then I thought early stage really meant less serious, and it does. But now I know that stage 1A doesn’t mean it’s light or easy. It can be sneaky, persistent, shifting, but still slow, and that itch? For real, it’s different than pain, but somehow it’s not.

A Decade of Treatments and Tough Lessons

And in 10 years, treatment is kind of like walking on a treadmill that doesn’t have a stop button. I have been through narrow band ultraviolet B light (NBUVB) treatment. I’ve had topicals that are things like steroids, meclorethamine and Valchlor. I’ve had systemic treatments that include methotrexate, targetin, which is, I think, bexarotene, and now Pegasys Interferon. And each of these really does have its moment of glory. Well, methotrexate didn’t for me, because I don’t even think I made it 14 days before I was removed because of the impact to my liver.

The Cycle: What Works Until It Doesn’t

But the reality is for me anyway, that they work until they don’t, and then we try the next one. And I do find I have to remind myself that the goal for treatment for what I have, Mycosis Fungoides, is to improve quality of life by relieving symptoms, preventing migration to other organs, and if it all goes well enough, eliminating or reducing the number of cancerous cells in the skin and blood.

The Frustration of Slow Progress

Now, one thing I did think would happen by now, more treatment progress, maybe even getting closer to a cure. I mean, it’s been a decade, right? But the reality is that treatment options just haven’t expanded much. Phototherapy, things like narrow band UVB radiation or PUVA, which another type of treatment, topical steroids, topical nitrogen mustard, bexarotene, methotr, interferon, electron beam radiation. These were around a decade ago and are still the go to options now, and most of us will cycle through combinations over time. What works for a while it can stop, and that pattern really has not changed at all. Right?

Yes, There Have Been Some Advances

There have been some new developments, but they’re mostly for the advanced stages of Mycosis Fungoides, and I’m glad they’re happening, right? These are things like, and I’m going to tell you right now I’m not pronouncing these correctly, correctly. Brentuximab, mogamulizumab, that was proved in 2018 is genuinely a new option. There are clinical trials looking at inhibitors and monoclonal antibodies, most still in the testing phase. And there’s this topical resiquimod in others that just aren’t FDA approved yet. You know one thing I’ve learned, progress feels really slow when you’re the one waiting for it.

Reflections From Year Ten

So what I’ve learned as I reflect on this week 10 years ago when I was diagnosed. The body changes, and the mind adapts. Resilience, that is not a superhero trait, it’s a quiet muscle, and it is built slowly over years. And you can learn how to advocate, how to say no and to make space for joy. I did that just this week. Medication makes me tired, and there was something I really wanted to do, but I knew I had to say no in order to retain my sanity as I go through the work week, right? You also learn how to keep living with the question mark hanging overhead, right?

Looking Ahead—With Eyes Wide Open

And the reality is I have no idea what the next 10 years will bring, but the we’re 10 years in from my diagnosis, and we still have no cure, right? What I do know is I’m probably going to need new treatments at some point. What I’m on now may hold or it may not, because that’s the rhythm of this disease. But I’m not stuck in dread. I’ve got options, I’ve got experience, and I’ve learned to ask questions, it’s surprising how hard that can be sometimes. And I know what side effects I’m willing to tolerate and which just aren’t worth it. I also have a steadier voice, more lived in perspective, and an understanding of what it means to live in the in between.

From Living to Leading

I’ve also learned that when you have a rare disease, you don’t just live it. You actually end up leading something too and that’s because you lead by educating, by sharing, by pushing for funding, research and visibility. And our leadership in education, that can be the reason patients down the line will have more options than we did when we were first diagnosed.

To Anyone Just Starting Out

So if you’re listening and you’re where I was 10 years ago, know this: your voice matters, even if it’s shaky, even as you try to figure things out. And if you’re 10 years in like me, you’ve earned your weariness, but you’ve also earned your strength.

More Than Surviving—Building Something From It

I’m not just living with Mycosis Fungoides. I’m actually building something out of it, and I hope you are too.

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.