Finding Light in the Shadows: My Journey with Chronic Illness

When You’re the Potato (And Now, Also 45)

When you get a chronic illness diagnosis, you expect fireworks—maybe a brass band playing Hallelujah in triumphant unison. But for many of us, it's more like a game of medical hot potato. Except, surprise! You're the potato. And the relief you thought would wash over you turns into a realization that you're now just bouncing between specialists, each one looking at you like you're a puzzle missing a few key pieces.

For those of us with conditions like Ehlers-Danlos Syndrome (EDS), getting a diagnosis is akin to scaling Everest. You endure years of unexplained pain, baffled doctors, and those dreaded phrases: “It’s all in your head” or “Maybe you’re just anxious.” So, when a diagnosis finally comes, there is relief—at first. Someone sees you, validates your struggle. You’re no longer invisible. But what follows can be crushing: the diagnosis isn’t a golden ticket. It’s often just the beginning of another exhausting journey through endless referrals and waitlists.

For me, there was a moment when I had to stop and recalibrate. I’d fought so hard for my diagnosis, only to find myself worn out and demoralized. I’d reached the point where I gave up for a while—mentally and emotionally. That’s when my world shifted, and I owe much of that to two very important factors: my partner, Sam, and my incredible friend, Victoria.

Friendship, Healing, and the Power of a Good Pivot

Victoria came into my life when I least expected it, through a mutual friend. We hit it off almost immediately, and she introduced me to the world of spiritual healing. It’s no exaggeration to say that this friendship changed my life. Meditation became my lifeline—a way to quiet my overwhelmed mind when the world and my health felt too chaotic to manage.

Sam, of course, has been my rock throughout this journey. His unwavering support and patience have kept me grounded during my darkest days. Between his strength and Victoria’s guidance, I slowly found a path forward again.

However, finding peace doesn’t mean I’ve stopped being busy. These days, I’m channeling my energy into a new project: building a website to support others living with chronic illness. When I first gave up work, I was content to sink into my sofa and devour books. But that comfort soon gave way to restless energy. I was bursting with all this information, and I started noticing how many people were struggling with the same battles I’d faced. That’s when the website idea came to life.

A Haven for Connection: The Lantern’s Rest (Coming Soon!)

One part of the website I’m particularly excited about is a chat room I’ve named The Lantern’s Rest. I admit, I stole the name from one of Sam’s books—and no, I’m not sorry! The name captures exactly what I want this space to be: a warm, safe place where people can come together, share their stories, and find support.

It’s not live yet, but it’s coming soon—and I can’t wait.

While I love writing articles and sharing insights, I’m most looking forward to the people I’ll meet through the site. Chronic illness can be so isolating, and sometimes all you need is someone who truly understands what you’re going through. I hope The Lantern’s Rest will become that space for many people—a refuge where they can feel seen and heard.

As part of this new chapter, I’m also excited to share that a podcast, Unremarkable Me, is in the early stages of development. It should be available toward the end of the year and will focus on sharing stories, advice, and insights from the chronic illness community.

Potions, Foot Soaks, and the Magic of Self-Care

Outside of writing and managing the website, I’ve also developed a bit of a hobby creating tonics, teas, and other remedies. I make a foot soak that’s absolutely divine—seriously, it leaves your feet as soft as a baby’s bum. and filp flop ready. It’s another way I’ve found to care for myself and others, and I’m considering sharing some of these recipes on the site. Self-care isn’t just about bubble baths and candles (though I’m a fan of those too); it’s about finding little rituals that bring you comfort and joy.

Finding Purpose in the Chaos

Looking back, I’ve learned that the road to acceptance isn’t linear. There were times when I thought I’d never find my footing again. But through friendship, creativity, and a bit of stubbornness, I’ve carved out a new path—one where I can hopefully help others along their journey.

For anyone out there who feels stuck or invisible, please know this: your story matters. There is a community out there for you, a light waiting to guide you through the shadows. Sometimes, you just have to build that lantern yourself.

And today? Well—today is my 45th birthday. I’m not entirely sure whether I’m feeling weird about turning 45 because I’m now officially old, or because the fact I’ve actually made it this far feels surreal. Maybe it’s both. Either way, I’m here, I’m breathing, and yes—there will absolutely be cake today.

Stay Strong and be kind to yourself my chronically ill friends.