Making imperfect choices is part of living with hemophilia

I recently came across a social media post that hit home. It began: “Never judge someone with a chronic illness if they …” and went on to list things like skipping meds, eating foods that might trigger symptoms, resting all day, or even doing something that looks “wrong” to outsiders — like enjoying a drink at a party, lifting weights, or ignoring symptoms for a while.

I found myself nodding with every line. And I thought of my husband, Jared.

Jared lives with severe hemophilia B and epilepsy. And like many people with chronic illness, he walks a delicate tightrope between managing his conditions and simply trying to live a full and meaningful life. He follows his medical routine — until he doesn’t. He rests when needed, and other times, pushes beyond his limits just to feel normal. He has days when he takes extra care, and days when he eats the wrong thing, skips a stretch, or lifts something heavier than advisable.

And he knows it.

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Whenever he does something “reckless” — like working on a home repair project or lifting a heavy dumbbell — he’ll laugh and say, “Such a good hemophiliac, right?”

Let me be clear: He’s being sarcastic. That joke is his way of coping. It’s how he pokes fun at the pressure to always be the model patient — responsible, predictable, uncomplaining. He’s not mocking the condition. He’s challenging the impossible standard.

And I get it. He’s spent his life under a microscope — from well-meaning relatives who worry about his every move to medical professionals who occasionally forget he’s more than just a diagnosis. Humor gives him breathing room. It’s his way of saying, “I know what I’m doing. I live this. Let me have this moment.”

When ‘doing your best’ doesn’t look perfect

There’s a podcast called “The Accessible Stall,” hosted by two disabled individuals who aren’t afraid to challenge the status quo. On their website, they describe their mission as challenging the views and expectations of the disability community — not just repeating popular takes, but digging into the “why” behind difficult topics.

To me, that includes questioning the pressure to always get things “right” — to optimize every decision, justify every action, and live as if every choice must be morally sound in the name of health. It’s an honest, refreshing perspective that reminds me of how Jared moves through life with chronic illness: with wit, self-awareness, and the freedom to set his own rules.

Life with hemophilia and epilepsy is far from perfect. It’s full of trade-offs, imperfect choices, and small rebellions made in the name of staying sane.

Jared isn’t being reckless; he’s just trying to be human. As his spouse, I trust that he’s thought his choices through.

That trust didn’t come overnight. Like many caregivers, I started out gripped by fear. I thought I had to be the enforcer, the one who made sure every rule was followed. But that left no room for autonomy or nuance. Over time, I’ve learned to ask: What’s the worst that could actually happen?

If the answer is possibly life-threatening, I start a loving conversation leading to a discussion of possibilities. If it’s anything less than that, I simply let him be.

The post that inspired this reflection ends with a simple reminder: “Unless you know what they are dealing with … keep your comments to yourself.”

I’d take it further — listen, support, and understand that “doing your best” might not always look picture-perfect. Sometimes it looks like sarcasm. Or stubbornness. Or picking up a hammer on a bad joint day.

More often than not, that turns out to be perfectly fine.

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.