Letters to my Younger Self: Leah Morris

Welcome back to our series "Letters to my younger self".

If you could, what would you tell a younger you? What advice would you give? What tips could a younger you use to deal with the struggles you know are coming?

In this series, RARE Youth Revolution is reaching out to some of the slightly older members of our community who know what it is like to grow up with a rare disease.

By writing letters to their younger selves, we hope that they can offer some advice and guidance that benefits all young people with rare diseases.

Dear younger me, 

You’ve been through so much, some I wish you didn’t have to go through. And while some made you stronger, others left you feeling like life wouldn’t get better. 

You were just three years old when doctors diagnosed you with MPS Type 6. What was meant to be a tonsillectomy turned into something more complicated—you never really recovered the way everyone expected. One appointment turned into many, tests piled up, and you saw many specialists. Eventually, the answers came with a diagnosis, and with it, four words you couldn’t yet understand, but would change the rest of your life: “There is no cure.”

You’re going to grow up feeling different sometimes. Hospitals will become a second home, and you’ll be expected to understand medical terms and make grown-up decisions. You’ll spend a lot of time in waiting rooms, sometimes even your life will feel like a waiting room, while your world feels like it’s stopped, everyone else’s will keep spinning. You didn’t understand what was happening, but you were brave in ways no one your age should ever have to be. And that bravery and determination have never left you.

“...Sometimes even your life will feel like a waiting room…”

Things will feel really hard, it’ll come and go in waves, and it might seem like you’re always falling behind or missing out on what everyone else your age is doing—grades, parties, friends, milestones. But I want you to know that your life will be full of achievements too, just a different kind. While others might get top marks or awards, you’ll learn how to get through days that most people couldn’t imagine handling. You’ll become brave, determined when things feel impossible, and resilient every time life knocks you down or another medical mystery gets thrown at you. These aren’t the kind of achievements that come with certificates or medals, but they matter a lot. You won’t walk the same path, you won’t have a ‘normal’ childhood, but the strength you’ll carry, the compassion you’ll grow, the courage you’ll find in everyday, and the quiet victories you’ll win—they’re just as real and just as worthy as any other achievement.

I know how lonely it felt growing up. From the outside, it probably looked like you were just quiet, socially awkward, anxious, shy, or just different. But you knew it was more than that. While other kids ran around causing trouble or passed notes in class, you were stuck between hospital visits and fatigue, trying to understand a body that didn’t work like everyone else’s. The only notes passed to you were hospital letters and bad news for a while. You wanted to join in, you really did, but the space between you and them always felt a little too wide. 

Making friends wasn’t easy. Sometimes it didn’t happen at all. You mostly had online friends, voices in a headset, chat bubbles on a screen. And I know that hurt in ways you couldn’t put into words. You wondered constantly if something was wrong with you, if maybe you just didn’t belong. But I want to tell you something now that I wish you could have known then—there was never anything wrong with you. You’re perfect as you are. You were just following a different path, one that required a quiet kind of strength. Over time, you’ll learn how to enjoy your own company. The silence that once felt like loneliness will start to feel like peace. You’ll discover the strength in doing things at your own pace, in creating your own world when the outside one feels too heavy. Online friends are still real friends. They’ll understand you in ways others can’t, because sometimes, friendship isn’t about the distance—about depth and connection. 

You’ll grow into someone who doesn’t need a crowd to feel seen. You’ll laugh at your own jokes and build a life that fits you, not one that tries to fit into everyone else’s mold. And when the right people do come along, and they will if you give it time, you’ll know they’re staying, not because you changed to belong, but because you were always enough as you are. You never needed to change. 

“You’re not broken, and you’re never alone. You’re growing into who you’re meant to be...”

Don’t be afraid of asking for help—your disability will mean accepting you will need help occasionally, sometimes more than others. But that doesn’t make you a burden—your illness is a burden on you. You didn’t choose to carry something so heavy, but that doesn’t mean you yourself are a burden. You’ll have moments where you surprise yourself. You’ll laugh more than you think. You don’t know it now, but you’ll start an online community for other people who feel like you. You’ll make people feel seen and safe because you understand what it’s like to be chronically ill. And most importantly, you will not be defined by your illness. It’s part of your story, of course—but it’s not the whole book, only a chapter. 

You’re not broken, and you’re never alone. You’re growing into who you’re meant to be—it’s just taking a little longer than most. You’re someone who’s kind, someone who keeps showing up, even when it’s hard. That’s not just enough. That’s an achievement in itself when life is hard, and others will see that too!

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