More Than a Bleed: The Unseen Emotional Landscape of Hemophilia

 It's funny, you know? When people hear 'haemophilia,' they usually just think of bleeding. Like, a lot of bleeding. And yeah, that's a huge part of it. I've had my fair share of bleeds, from the 'oops, I bumped into a table' kind to the 'uh oh, this is a big one' kind. But what most people don't see, what they don't get, is everything else that comes with it.

It's like living with a shadow that's always there. It's the constant worry in the back of your mind. 'What if I fall?' 'What if I get hurt?' 'What if I have a bleed and I'm all alone?' It's the fear that a simple, everyday thing could turn into a major medical emergency. It's the anxiety that never really goes away.

And then there's the guilt. Oh, the guilt. I've felt it so many times. The guilt of holding my family back from doing things. The guilt of my parents having to worry about me all the time. The guilt of feeling like a burden. It's a heavyweight to carry, and it's something that's not easy to talk about.

But it's not all doom and gloom. Living with haemophilia has taught me so much. It's taught me to be strong, to be resilient. It's taught me to appreciate the good days, the days when I feel 'normal.' It's taught me to be grateful for my amazing support system – my family, my friends, my doctors and nurses. They're the ones who help me get through the tough times.

And you know what? It's also connected me to an incredible community. A community of people who just 'get it.' We share our stories, our struggles, our hopes. We laugh together, we cry together. We're a family, and that's something I wouldn't trade for anything.

So yeah, haemophilia is more than just a bleed. It's a whole emotional rollercoaster. It's fear and anxiety, but it's also strength and resilience. It's guilt and sadness, but it's also love and community. It's my life, and I'm learning to embrace all of it.