There comes a moment in every life when you realize this: if you don’t claim your own story, someone else will write it for you.
From a young age, I made a quiet but deliberate choice: my Juvenile Rheumatoid Arthritis (JRA), now called Juvenile Idiopathic Arthritis (JIA), wasn’t going to decide who I was. Not my diagnosis, my limitations, or the assumptions people made the moment they saw my braces, casts or my gait. I learned early that if I didn’t define myself, someone else would happily do it for me.
We all do this, in one way or another. When we meet someone new, our instinct is to sort and categorize. Not out of malice, but out of a human need to understand the world quickly. We start with broad categories: gender, age, ethnicity. Then, as we interact, those categories soften and shift. We begin to see the person instead of the label.
“We all get sorted before we get seen.”
I remember an episode of the tv show Bones where Angela, Hodgins, and Zack spent the entire episode trying to figure out the gender of a visiting forensic specialist. It wasn’t judgment; it was curiosity, that “need to know” reflex we all carry. We want the world to make sense. We want people to fit into boxes we recognize.
When People Start Playing Guess‑Who
And it’s not just my JIA that people try to decode. Being biracial adds another layer to the assumptions people make before I’ve even opened my mouth. Most people look at me and land somewhere between Italian, Portuguese, or Spanish. They’re not sure, but they’re confident enough to guess.
Meanwhile, I’ve been President of a Black charitable community group and a speaker for the Ontario Black History Society. More than once, I’d arrive at an event or speaking engagement only to be mistaken for a guest, a volunteer, or someone who wandered into the wrong room. The look of surprise when I stepped up to the podium never got old.
It was a strange kind of invisibility. Being seen and mis-seen at the same time. People thought they were placing me, but really, they were erasing entire parts of me without even realizing it.
Again, these moments aren’t malicious. They’re just another reminder of how quickly people try to place you, label you, understand you, even when they get it wrong.
And it’s exactly why I learned, early on, that I need to know who I am before anyone else decides for me. It sounds simple, but it’s taken years to understand how much intention that actually requires.
So Who Am I?
A work in progress? Absolutely. A sum of my experiences? Definitely! But also, the choices I’ve made about how to carry them. I am shaped by my JIA, but I am not defined by it. I am informed by my past, but I am not limited to it. And every year, every setback, every reinvention adds another layer to the answer.
I’m still learning who I am, and I suspect I always will be. But the most important part is this: I get to decide. Not the diagnosis, the assumptions. and not the room I walk into.
Me.
Knowing who I am is one thing. Navigating how others interpret me is another.
When Curiosity Gets a Bit Carried Away
There are stories I could tell, so many stories, about how people reacted to my restrictions. Both the tender moments and the ones that still make me shake my head. Children were often curious in the way children are; blunt, honest, unfiltered. Adults, though, were a different story. Some were kind. Some were uncomfortable. And some felt strangely entitled to information about my body.
Strangers would walk right up to me and ask, “What’s wrong with your leg?” No greeting. No context. No sense that they were speaking to an actual human being. Just the question.
I wanted to give them the benefit of the doubt. I wanted to believe they were concerned, that they were trying to understand. That maybe they were even wondering if there was a way they could help. But the truth is, most of the time it felt less like concern and more like curiosity dressed up as permission.
When Curiosity Puts On a Friendly Mask
Those moments taught me something important: when you live with a visible difference, people often feel they have access to your story before you’ve offered it. Their curiosity could be kind, clumsy, or intrusive. Sometimes all at once. And while I tried to give people the benefit of the doubt, it didn’t change the reality that their questions arrived before their humanity.
This isn’t just a chronic illness thing. Anyone who’s ever lived in a body that others felt entitled to interpret will understand this.
That’s why knowing who I was, and who I wasn’t, mattered so much.
“If you’ve ever had to reclaim your own story, you already know what I mean.”
I couldn’t control how others interpreted my gait, or my limitations, but I could control the narrative I carried into every room.
And the truth is, I’ve never been a finished product.
My identity has never lived in a single box. It’s always been a blend; of cultures, of experiences, of limitations and strengths. Learning to hold all of that at once has been its own kind of education.
And while I’ve spent years learning how to define myself before anyone else can, I also know I’m not the only one who’s had to navigate this strange mix of visibility and misunderstanding. The stares. The questions. The assumptions. The moments when someone you’ve never met feels entitled to your story before they’ve even learned your name.
So I’m curious. Is there anyone out there who knows what I mean? Anyone who’s lived inside a body that others felt free to interpret, explain, or question? Anyone who’s had to decide, again and again, who they are beyond the labels people reach for?
If so, I’m glad you’re here.
Even if your story looks nothing like mine, every voice that joins this conversation makes the world a little kinder for the next person who walks into a room already carrying a label they didn’t choose.
So, here’s to walking into every room, not as a label, but as ourselves.
Author’s Note:
Lately I’ve been starting my mornings with I Celebrate Me by Ingarose. I first came across it on Instagram, and it stopped me in my tracks in the best way. It’s become one of those songs that quietly sets the tone for the day, especially when I need a reminder to stand in my own story. In my humble opinion, if you’re looking for something that helps you reconnect with your own strength, it’s a beautiful place to begin.