The hidden value of living with hemophilia

My husband, Jared, and I both have marketing backgrounds. We’re used to thinking in terms of value. In branding, you ask: What makes this product worth noticing? What problem does it solve? Why should people care?

It’s strange to apply that mindset to something like hemophilia. But when you live with a chronic condition — or love someone who does — you learn quickly how much the world tends to value efficiency, output, and resilience that looks a certain way.

And you start to question: Where does that leave us?

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Not all value is loud

Jared lives with hemophilia B and epilepsy. His days aren’t structured around productivity hacks or peak performance. They revolve around energy management, bleed prevention, and learning to pause when everything in him wants to go faster. That kind of life doesn’t always look valuable, but it is.

In fact, I’d argue that living with hemophilia forces you into an intentional life. You can’t afford to live passively. You make your choices deliberately — when to move, when to rest, when to go out on a whim and make it count. You learn to weigh risks, savor moments, and adjust quickly. That’s a skill set not everyone has.

I’ve seen Jared weigh whether to join a family outing based on how his joints feel after walking a flight of stairs. I’ve seen him wake up early to infuse just so he can be present with our daughter later in the day. He does these things not because they’re glamorous, but because they matter.

And no, it’s not all magic. That kind of intentionality takes effort. It’s hard to sustain. People like to romanticize the idea of “slow living,” but they rarely acknowledge how much work it takes — especially when you’re doing it not for aesthetics, but for survival.

Adaptation is a kind of value

Jared often says that hemophilia gave him a lens he wouldn’t have had otherwise. It taught him to listen to his body, to be resourceful, to stay steady in the face of discomfort. It’s made him more adaptable — and more reflective — than most people I know.

That might be a controversial opinion, especially coming from someone with a lifelong condition. But I think it holds truth. Living with limitations forces you to find meaning beyond what’s visible. You become excellent at navigating complexity. At recognizing trade-offs. At knowing when to bend and when to hold your ground.

And for someone like Jared — a husband, a father, a builder of things — that kind of wisdom is invaluable.

So much of the world is optimized for people with perfect bodies and endless energy. But there’s a quiet kind of brilliance that comes from learning to work with your body instead of against it. From building a meaningful life without waiting for perfect conditions. From knowing when to push and when to rest — and honoring both as worthy.

That’s value, too. Not just to us, but to the people around us.

And while I wouldn’t wish hemophilia on anyone, I can say this: The perspective it offers — and the intentional life it demands — is a kind of gift. It’s not the kind that comes wrapped in accolades or admiration. But it’s the kind that grows deep roots, teaches you what really matters, and helps you show up, again and again, even when it’s hard.

And that, in itself, is something worth honoring.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.