I am a hemophiliac. I say that plainly, because for a long time I couldn’t. For years, my bleeding disorder was something I wanted to neglect. I hated what it interrupted, managed it privately, and had little interest in explaining myself to a world that wouldn’t understand anyway.
In those early years, hemophilia was simply a series of inconveniences: failed infusion attempts, ankles instead of arms because the veins weren’t cooperating, no access to a community of advocates who understood what we were navigating. Nothing dramatic. Just quietly different.
But school made it dramatic. On a day I was excused from school for a religious holiday, my school convened an assembly, without me present, to educate the entire student body about my bleeding disorder and how to behave around me. No more ball hockey at lunch. Extra caution around the snow pile in the yard. I came back to find I had become someone to be managed, not played with.
Hemophilia wasn’t common in the family. And when you’re the only one who is different, exclusion finds you, not out of cruelty, but out of a gap in understanding nobody had thought to fill. I was different, and different was less.
What grew out of that was a fierce, almost reckless desire to be normal. To defy every restriction placed on me. I played every sport imaginable. I played tackle football on Thanksgiving. Was it advisable? No. Was it the most liberating thing I had ever done? Absolutely.
Defiance, it turns out, is not the same thing as belonging.
Eventually, we landed in Canada. My mom, who had always been a formidable advocate, quickly found her footing, connecting with Hemophilia Ontario, seeking out every program and resource available. I was ten, maybe eleven, and I was going to camp.
What I remember most about my first time at YMCA Wanakita is the place itself: sprawling grounds, multiple waterfronts, rock climbing, the kind of facility that makes you feel like you’ve been dropped into the best summer of your life.
But I’ll be honest: it wasn’t magical. I was late to the party. A lot of these kids had been coming since the junior age group, had their friendships already formed. I was an outsider in my own cabin, half-accepted at best. I came home and didn’t look back.
A lot of people don’t have a great first camp and never return. If that’s you, keep reading.
Two years later, I went back. Thirteen now, a senior camper, and everything clicked differently. I made friends fast. But then I met Sean.
Sean was my counsellor. He also had a bleeding disorder. And he was everything I had been trying to become on my own: athletic, charismatic, completely unencumbered by his diagnosis. He moved through the world without apology, without shame, without any of the resentment I’d been dragging around for years.
What he gave me, without ever making it a lesson, was hemophilia pride. The confidence to carry my diagnosis in public. To answer “Oh, you’re a hemo?” with a prideful yes instead of a flinch. To understand that the resilience I’d built wasn’t in spite of my bleeding disorder. It was because of it.
The Full Circle I Almost Missed
After camp, I became a Student Counsellor at Wanakita for two summers. Before I could use my training as a Counsellor, my family moved. In subsequent summers, I chose my hometown friends over the camp experience, and that was that. It felt fine at the time.
It stung later though. The friendships I didn’t build. The skills I didn’t develop. The network I didn’t grow into. It’s the kind of structural decision you only recognize in hindsight.
Years later, I returned to Hemophilia Ontario: Community Camp, then YAMP, the Youth Adventure Mentorship Program, camp outside of summer camp, for those who couldn’t make it, needed a first look, or simply needed another way in. Coming back as an adult, I wasn’t mourning what I’d missed. I was getting to be what I once needed.
What I found at both was a warm welcome, and children navigating the exact same journey I once had, kids finding their people the same way I found mine. And there I was, getting to be part of it.
That’s when I understood what Jordan and Luke, two longtime Wanakita Counsellors, were building. They gave summer after summer to Wanakita, to this community, to kids like me, and instead of stepping back, they are doing it all over again. YAMP is their second act: a mentorship pipeline, a parallel to summer camp, a place where your bleeding disorder stops being a source of shame and becomes a source of identity and pride.
The Shoulder Worth Tapping
This one goes out to you, the person who has learned to manage their bleeding disorder and moved on. Don’t let that be the whole story. The community that shaped us needs people who lived it. Show up for the kid who is where you once were. Our history, our resilience, our identity as a community: that continuity doesn’t sustain itself.
