Advice I'd Give My Newly Diagnosed Self - Eps. 10

Today’s 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’re newly 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. 

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 the messyreality of chronic illness. I'm
Kelly Paul, and I've been livingwith Mycosis Fungoides since
2015. This is a space for realtalk, real experiences and

(00:26):
practical advice, becausesurviving is one thing, but
figuring out how to actuallylive, that's the hard part.
Today's episode is a letter tothe version of me who had just
been diagnosed with Mycosis,Fungoides. She was scared,

(00:47):
overwhelmed, Googling way toomuch, and had no idea what the
next year, let alone the rest ofher life, was going to be like.
Whether you're newly diagnosedyourself or supporting someone
who is I hope this gives yousome grounding and comfort,
because if I could go back, thisis what I'd say.

(01:09):
You do not have to understandeverything right now. It's okay
that this feels like a tidalwave of new terms, treatments,
appointments and fears. You donot need to have it all figured
out today. You are not failing.This is just how it starts.

(01:31):
You are allowed to feeleverything, grief, anger,
confusion, relief that it has aname, fear for the future, yes,
even resentment. Don't rush tofind the silver lining. Just
feel it, all of it. You'rehuman.

(01:53):
And Google is not your bestfriend. You are going to fall
into research rabbit holes. I amtelling you it is normal, but a
lot of what you'll find just maynot apply to you, academic
research papers, holy cow, thoseare difficult to understand, and
they're generally not ubercurrent. Worst case scenarios

(02:16):
will be frightening. Best casecan feel like false hope. Trust
your doctor, build your team. Becareful about the kind of energy
you bring in. Be thoughtful towhere you are and where you want
to go.
Advocate like hell, even if yourvoice shakes. You may need to

(02:38):
push for referrals. You may haveto fight insurance, and you will
have to ask more questions thanyou're comfortable with, and
it's going to feel awkward atfirst, but let me tell you what,
your future self will thank you.You deserve answers, and you
deserve to be heard, treat, butdon't lose yourself.

(03:03):
You are going to feel pressureto follow your treatment plan
like it is some kind of crazyreligion, every dose, every
appointment, every restriction,every single side effect. You'll
think being militant about itmakes you strong, that it proves
you want to get better, buthere's what you don't know yet,

(03:23):
treatment isn't the only thingthat matters. Living your life
still matters too.
You are not a burden. People wholove you want to be there, let
them. And the ones who fadeaway. I mean, that's sucks, but
it's not your fault, and somepeople just cannot handle being

(03:47):
around others who are sick andfacing an unknown future.
Your loved ones are terrifiedtoo, your diagnosis did not just
happen to you, it happened toeveryone who loves you, your
partner, your parents, yoursiblings, your closest friends,
they are all grieving in theirown way. Most will stay really

(04:10):
strong for you, but it may comeoff as calm, distant or awkward,
but it's often just fear anddisguise.
Your friends may not know whatto say. You might hear cliches
or silence, but it is notbecause they don't care. It's
because they are absolutelyterrified of saying the wrong

(04:32):
thing. They're watching someonethey love face something they
can't fix, and that its own kindof helplessness gives them
grace.
At work, you are still valuable,even if your capacity shifts.
You may have to workdifferently. You may need
flexibility, but illness doesnot erase your insights,

(04:55):
leadership, creativity or worthif your workplace can. See that
it says more about them than itdoes you.
You are going to second guess alot. You're going to question so
many of your decisions goingforward, every treatment choice,
every time you say yes or no tosomething, you're going to

(05:17):
wonder if you're doing the rightthing for your body, your
career, your relationships, yourfuture. And you you're going to
make decisions that are notperfect, that is not failure,
that's being human in the faceof uncertainty, and that's okay.
You're going to realizecuriosity doesn't always come

(05:40):
with judgment. You'll learn howto answer questions about your
illness that protect your peaceand open doors. You'll educate
with kindness, not because youowe anyone an explanation, but
because you want to make thingseasier for the next person like
you.
And it is okay if your goalschange. You are going to look at

(06:05):
your career, your body, yourrelationships and your future
very differently. That'sadaptation, and it is powerful.
You will laugh again. You willhave really good days. Right
now, though, it feels like thisdiagnosis has swallowed your

(06:27):
life, but joy is not over. Itmay look different, but you will
find it again. You'll stilldance, you'll still binge watch
your favorite show, you'll stillfeel sunlight and friendship and
beauty.
To sum it all up. You don't knowit yet, but you're about to

(06:51):
become stronger than you everthought you'd have to be. You
will cry, but you'll also rise.You'll build a toolbox of
knowledge, grit and compassion.You'll meet people who get it.
You'll even start a podcast, Ipromise this is not the end of

(07:14):
your story. It's just a harderchapter.
Thanks for listening to Fine,But Not Fine. If this episode
resonated with you, subscribe soyou don't miss what's next. And
if you got a story question orjust need to vent, reach out.
I'd love to hear from you untilnext time, take care and keep on

(07:37):
going.