Notes from the Desk of Hemophiliac

For the longest time, I felt like I was playing a supporting role in a movie about my own life. My role? "The Patient." My script was simple: listen to the doctors, take the medication, and just… exist. It is a strange, hollow feeling, isn't it? Being defined by a condition rather than the person living with it. For years, I felt like a passenger in my own body, watching the scenery go by while someone else held the steering wheel. But recently, I embarked on a journey that changed everything: I found my voice. If you have ever felt small in a sterile doctor’s office or overwhelmed by medical jargon, I want you to know that you aren't alone. And more importantly, I want you to know that there is a way out of the passenger seat. The Shadow of Silence When I was younger, my world was shielded by my parents. They were my advocates, my fiercest defenders. They fought the battles, translated the medical language, and ensured I got the best care possible. I will be forever ...

Living with hemophilia isn't just about managing a bleeding disorder. It's about carrying an invisible weight that few people understand: the constant, nagging fear of "what if." What if I bump into something? What if I get a bleed that won't stop? What if I can't be there for my family because of this condition? If you're living with hemophilia or caring for someone who is, you know this burden intimately. The fear of the unknown can feel overwhelming, even paralyzing. But here's what I've learned through my own journey: those fears don't have to win. The Evolution of Fear: From Childhood to Adulthood When I was younger, every bruise felt catastrophic. Every scraped knee seemed like the end of the world. My parents did their best to protect me, wrapping me in layers of caution and concern. But you can't bubble-wrap a kid forever, and that protective instinct, while loving, sometimes amplified my own anxieties. As I grew older, the fear evo...

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...

Looking Back at Myself: Finding Who I Am with Haemophilia It's funny, isn't it? When you live with something like haemophilia, it doesn't just affect your body; it really gets into your head and heart too. For so long, I felt like my identity was just... 'the kid with haemophilia.' It was like looking in a mirror and only seeing the condition, not the person behind it. And honestly, that can be a really tough place to be. I remember feeling so different from my friends. They'd be running around, playing sports, and I'd be sitting on the sidelines, worried about a bleed or just feeling too tired. It made me question so much about myself. Am I strong enough? Am I capable? Will anyone ever see past this thing I have? Those doubts can really eat at you, you know? But over time, something started to shift. It wasn't a sudden, dramatic change, more like a slow dawning. I began to realise that haemophilia is a part of my story, but it's not the *whole...

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 ...

What is pain? Pain is a sensation which is uncomfortable and makes us feel miserable comparing the conditions of us with others. It is a unique condition which provides unique perspectives on life. Pain makes us, break us, remould us and help us to rebound ourselves if taken sensibly and intuitively. The suffering which is brought by the pain is the indication: it is a pure clear indication: “I will make you or break you, let me know how I will treat you.” Pain also works as a cleaner or intensifier. It is a catalyst which makes things very clear and distils us. It is very painful that we are suffering from the years from the various types of pains but never understand how it will help.  Maker or Breaker:  There are two approaches to handle these pains: either we endure them and curse the luck, or we understand the significance of occurrences of the patterns and make meanings out of them. Many people drag their life throughout in pain and curse their fate and desti...