Even with hemophilia, it’s possible to have high standards for love

People often assume that loving someone with hemophilia — and in my husband’s case, epilepsy, too — must come with endless patience, unshakable optimism, and the kind of soft, gentle pity we reserve for those we imagine can’t carry their own weight.

But mine is a different kind of love. It’s fierce. Expectant. And unapologetically honest.

It’s a love with high standards.

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I’ve always believed that support and respect go hand in hand. I respect my husband’s body — what it can and can’t do. I’ve watched him sit through countless factor IX infusions, calmly threading the needle into his arm like it’s no big deal. I’ve seen him get up the next day with a fresh bruise and still make coffee, still show up to work, still crack sarcastic jokes about being a “good hemophiliac” — a label he wears sarcastically, of course.

He doesn’t ask for sympathy. He asks to be seen.

So I don’t coddle him. I don’t treat him like he’s fragile china that must be covered with Bubble Wrap for protection. I ask him — with love — to keep trying. To keep reaching further. Because I don’t want him to settle into smallness if there’s a multitude of ways he can still grow.

When he forgets to infuse, I don’t scold him. But I also don’t let it slide. I ask what got in the way. I remind him — gently but firmly — that his health isn’t optional. That I want a future with him, and that means taking his treatment seriously.

And when he does take care of himself, when he follows through — not just with infusions but with life — I celebrate him, not as a patient doing his duty, but as a person reclaiming his agency.

Chasing and choosing freedom together

From the start, he knew I’ve always wanted to be free. Not reckless, but free. I crave movement, forward motion, the feeling that I’m building something that’s mine.

I’ve always been the girl with the tattoos, the piercings, and the fierce appreciation for art and autonomy. The free spirit with a planner. The dreamer who still wants structure, but on my terms.

And he never tried to clip my wings. Instead, he chose to try to be free alongside me.

Living with hemophilia means we have to plan more carefully than most couples. We weigh every trip, every new routine, every leap of faith against risk — but we don’t let the risks stop us. Whether it’s deciding to move homes, take on new work, or even just go on a day trip that involves more walking than usual, we talk through it. We assess the bleed risk. We pack factor. And we go.

We both know that disability brings limits, but limits don’t mean we stop dreaming. It means we get creative with how we build.

Grit and grace

Loving someone with a chronic condition doesn’t mean lowering the bar. It means raising each other with care, honesty, and a deep respect for what’s still possible.

There are days I carry more. There are days he surprises me with how much he can hold — emotionally, mentally, physically. Like when he insists on helping clean the house despite a mild bleed, pacing himself but showing up anyway. Or when he comforts me through a rough day while quietly tending to his own infusion routine. Or when he gets up early to help our daughter get ready for school, because I work late hours and need that extra sleep to function.

It’s not always equal. But it strives to be equitable. And more importantly, it’s real.

And real love doesn’t shrink. It transforms.

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.