This podcast 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’renewly 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. 

Advice I'd Give My Newly Diagnosed Self – Eps. 10 – The Fine, But Not Fine Podcast

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. 

Transcript – Eps. 10

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 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.

A Letter to My Newly Diagnosed Self

Today’s episode is a letter to the version of me who had just been diagnosed with Mycosis Fungoides. 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.

You Don’t Have to Understand Everything Right Now

You do not have to understand everything right now. It’s okay that this feels like a tidal wave of new terms, treatments, appointments and fears. You do not need to have it all figured out today. You are not failing. This is just how it starts.

Allow Yourself to Feel Everything

You are allowed to feel everything, grief, anger, confusion, relief that it has a name, fear for the future, yes, even resentment. Don’t rush to find the silver lining. Just feel it, all of it. You’re human.

Be Cautious With Online Research

And Google is not your best friend. You are going to fall into research rabbit holes. I am telling you it is normal, but a lot of what you’ll find just may not apply to you, academic research papers, holy cow, those are difficult to understand, and they’re generally not uber current. Worst case scenarios will be frightening. Best case can feel like false hope. Trust your doctor, build your team. Be careful about the kind of energy you bring in. Be thoughtful to where you are and where you want to go.

Advocate for Yourself

Advocate like hell, even if your voice shakes. You may need to push for referrals. You may have to fight insurance, and you will have to ask more questions than you’re comfortable with, and it’s going to feel awkward at first, but let me tell you what, your future self will thank you. You deserve answers, and you deserve to be heard, treat, but don’t lose yourself.

Balance Treatment with Living

You are going to feel pressure to follow your treatment plan like it is some kind of crazy religion, every dose, every appointment, every restriction, every single side effect. You’ll think being militant about it makes you strong, that it proves you want to get better, but here’s what you don’t know yet, treatment isn’t the only thing that matters. Living your life still matters too.

Accept Support from Loved Ones

You are not a burden. People who love you want to be there, let them. And the ones who fade away. I mean, that’s sucks, but it’s not your fault, and some people just cannot handle being around others who are sick and facing an unknown future.

Understand Others’ Reactions

Your loved ones are terrified too, your diagnosis did not just happen to you, it happened to everyone who loves you, your partner, your parents, your siblings, your closest friends, they are all grieving in their own way. Most will stay really strong for you, but it may come off as calm, distant or awkward, but it’s often just fear and disguise.
Your friends may not know what to say. You might hear cliches or silence, but it is not because they don’t care. It’s because they are absolutely terrified of saying the wrong thing. They’re watching someone they love face something they can’t fix, and that its own kind of helplessness gives them grace.

You Are Still Valuable at Work

At work, you are still valuable, even if your capacity shifts. You may have to work differently. You may need flexibility, but illness does not erase your insights, leadership, creativity or worth if your workplace can. See that it says more about them than it does you.

You Will Second Guess, A Lot

You are going to second guess a lot. You’re going to question so many of your decisions going forward, every treatment choice, every time you say yes or no to something, you’re going to wonder if you’re doing the right thing for your body, your career, your relationships, your future. And you you’re going to make decisions that are not perfect, that is not failure, that’s being human in the face of uncertainty, and that’s okay.

You’ll Learn to Educate Others Kindly

You’re going to realize curiosity doesn’t always come with judgment. You’ll learn how to answer questions about your illness that protect your peace and open doors. You’ll educate with kindness, not because you owe anyone an explanation, but because you want to make things easier for the next person like you.

Your Goals Will Change

And it is okay if your goals change. You are going to look at your career, your body, your relationships and your future very differently. That’s adaptation, and it is powerful.

You Will Find Joy Again

You will laugh again. You will have really good days. Right now, though, it feels like this diagnosis has swallowed your life, but joy is not over. It may look different, but you will find it again. You’ll still dance, you’ll still binge watch your favorite show, you’ll still feel sunlight and friendship and beauty.

Your Strength is Just Beginning

To sum it all up. You don’t know it yet, but you’re about to become stronger than you ever thought 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, I promise this is not the end of your story. It’s just a harder chapter.

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 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.