Notes from the Desk of Hemophiliac

We often talk about hemophilia in terms of numbers: factor levels, joint bleeds, infusion schedules, and recovery times. But there is a set of numbers we rarely whisper about, even though they shape our lives just as much as our bloodwork does. Did you know that nearly 60% of people living with hemophilia experience depression , and almost 65% struggle with anxiety ? If you are nodding your head right now, know this: You aren't "failing" at having a chronic illness. You are navigating a silent storm that many see, but few truly understand. The Deception of "Looking Fine" There’s a unique kind of exhaustion that comes from looking perfectly healthy on the outside while fighting a war on the inside. As the saying goes: “The most deceiving part of having a bleeding disorder is that we could appear fine on the outside but could be battling so much on the inside.” We’ve become masters of the "I’m okay" smile. We push through the fatigue, the insomnia, and t...

You know, living with haemophilia, it's like being constantly at sea. One minute, things are calm, and the next, a huge wave of worry just crashes over you. It's not just about the bleeds, is it? It's about the constant, nagging fear that something *could* happen, at any moment. That's the real ocean of worry I live in. I remember when I was younger, I'd try to push those worries away. I'd tell myself, "Don't think about it, just live your life!" But it's hard, isn't it? Every bump, every bruise, every little ache sends my mind racing. Is this a bleed? Is it going to be a bad one? Will I end up in the ER again? It's exhausting, honestly. And it's not just my own health I worry about. I see my family, my parents, and my partner, and I know they worry too. Sometimes I feel like I'm a burden, even though I know they'd never say that. We're all in this together, and their worry just adds to mine. It's a heavy weight to c...