Fine, But Not Fine - Introduction, Ep. 1

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.

Episode Transcript

Kelly Paul (00:01):
You look fine, but you're not fine, and that's
exactly what we're here to talkabout. Welcome to Fine, But Not
Fine, the podcast aboutnavigating rare disease,
healthcare battles, and themessy reality of chronic
illness. I'm Kelly Paul, andI've been living with mycosis
fungoide since 2015. This is aspace for real talk, real

(00:24):
experiences, and practicaladvice, because surviving is one
thing, but figuring out how toactually live, that's the hard
part.
Hey everyone, and welcome to thevery first episode of Fine, But
Not Fine. I'm Kelly Paul, andI'm excited to finally be

(00:47):
sitting here recording this. ButI'm doing it because I know
firsthand how isolating,frustrating and overwhelming it
can be to navigate life with arare disease. If that's you, if
you've ever felt like you'reconstantly fighting for care,
struggling for insurance, orwondering how your health will
impact your career, then you'rein the right place. This podcast

(01:10):
is for you.
So let me take you back to theyear 2015. My husband was out of
town, and I was home alone whenmy doctor calle. It was a
Thursday evening at 6 pm, and Isaw my doctor's number flash up
on my screen. And you know whatI did? I ignored it. I knew deep

(01:34):
down that whatever was comingwas not good news, and I just
wasn't ready to hear it. I toldmyself, 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 walkinto a critical work meeting,

(01:57):
which I did attend, by the way.I had two choices, send it to
voicemail again and go into themeeting like nothing had
changed, or answer it and facewhatever this was. I picked up.
And let me tell you, my doctorwas amazing. He walked me

(02:18):
through everything. Explainedthat I had Mycosis Fungoides, a
form of cutaneous T-celllymphoma. He told me what it
was, what it wasn't, what mynext steps were, and likely how
things would progress over theyears. And he said something
that really, really stuck withme, and I'm paraphrasing, but he

(02:42):
said, I know you won't rememberhalf of what I'm telling you
right now, so I'm going to callyou back on Monday after you've
had time to sit with this, andyou can ask me all the questions
that have come into your mind.
And he was right. I didn'tremember most of it, but what I
did do was grab the closestthing I could find sticky notes,

(03:02):
and started writing, and I stillhave those notes today, messy,
scattered thoughts from themoment my life changed.
Questions I didn't evenunderstand yet, a list of things
I thought I needed to do, buthad no idea how to begin.
Those sticky notes were my firstattempt at processing what it

(03:26):
meant to have a rare andincurable disease. Over the
years, I've learned so much,often the hard way, about
navigating healthcare, dealingwith insurance, and balancing a
career while managing a chronicillness.
I have fought priorauthorization, had claims

(03:48):
denied, dealt with doctors whodid not take me seriously, and
had to make some reallydifficult decisions about my
health. And I know I am notalone.
That is why I started thispodcast because I wish I had
someone to guide me through allof this when I was first

(04:08):
diagnosed, and I want to sharewhat I have learned to help
others feel less alone, and talkabout the things we don't always
hear enough about, like how rarediseases impact work,
relationships, finances andmental health.
So what can you expect from thispodcast? Well, it's going to be

(04:31):
real, honest, sometimes a littleraw. I'll be covering topics
such as how to advocate foryourself in the healthcare
system, dealing with insurancedenials and prior
authorizations, navigatingcareer growth with a rare
disease. Should you disclose?What about accommodations?, The

(04:53):
mental and emotional side ofliving with an incurable
illness, and most importantly,how to turn our struggles into

something powerful (05:01):
advocacy, awareness, and change.
Most episodes will be just mesharing my experiences and
breaking things down in a waythat's practical and actionable.
And I'll also bring inoccasional guests who can add
their perspectives. Before Iwrap up this first episode, I

(05:24):
just want to say, if you'relistening to this and you have a
rare disease or you love someonewho does, you are not alone. I
see you. I understand. And thisspace? It's for us.
If you found any of thisrelatable, I'd love for you to
subscribe so you don't missfuture episodes. If there's a

(05:46):
specific topic you want me tocover, let me know. And if you
know someone who might find thispodcast helpful, please share it
with them. I'll see you nexttime on a fine but not fine.
Thanks for listening to fine,but not fine. If this episode
resonated with you, subscribe soyou don't miss what's next. And

(06:09):
if you've got a story, question,or just need to vent, reach out.
I'd love to hear from you. Untilnext time, take care and keep on
going.