My husband talks only about himself when he says he’d miss hemophilia

I’ve been thinking lately about how resilience is discussed in the Philippines.

After major storms, familiar images circulate online: weddings continuing despite floodwater inside churches, people joking or swimming through flooded streets, and families smiling while cleaning mud from their homes.

There is something admirable about finding humor when circumstances are miserable. But I’ve also seen frustration with the way these moments are celebrated, as though enduring hardship well is enough. Sometimes, searching for the bright side can become another way of asking people to tolerate things that should be better.

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Reframing works for my husband

My husband, Jared, has severe hemophilia B, and he has developed a perspective on it that not everyone appreciates.

A few years ago, I wrote about something he told me that I struggled to understand: If hemophilia suddenly disappeared from his life, he wasn’t sure he would want it to. He said he would miss it. An anonymous online commenter took issue with him for saying that, and I understood why his words might rub someone the wrong way. Hemophilia has caused Jared real pain through serious bleeds, infusions, limitations, and complications. To someone who wants to be free of hemophilia, hearing another person say they would miss it can sound offensive.

But Jared was not arguing that others should feel the same way. He was talking about himself.

Hemophilia has shaped his humor, his expectations, the way he handles disappointment, and even some qualities I love most about him. He does not believe the difficult parts were good. He simply recognizes that removing hemophilia from his story would mean imagining a different version of himself.

Reframing has helped Jared make peace with things he cannot change about his body. Still, even he acknowledges that this perspective is his. It should not automatically become anyone else’s.

Acceptance shouldn’t always come first

Someone with hemophilia can feel grateful for who they became. Another can hate the condition and wish it had never entered their life. Neither response needs correcting.

That is where reframing becomes complicated. The problem is not reframing itself, but expecting everyone to do it.

Sometimes we become uncomfortable watching another person struggle, so we rush to make it sound better. We tell them there may be a lesson in it or that they should look at things differently. Sometimes that helps. But sometimes a situation simply deserves to be called difficult, and sometimes discomfort is telling us that something can still be changed.

If someone cannot access the hemophilia treatment they need, I do not want our first response to be gratitude for whatever they are actually able to get. If barriers make independence difficult, perhaps we should not immediately teach people to tolerate those barriers better.

Sometimes the problem is not perspective. Sometimes it’s the circumstance.

Resilience isn’t the same as surrender

That is why images of Filipino resilience make me think about hemophilia differently.

Humor can help someone survive a flooded home. Continuing a celebration may be how a family chooses joy despite circumstances outside their control. Those choices are theirs.

But admiration becomes uncomfortable when resilience turns into an expectation. If people keep proving they can endure terrible circumstances, it becomes tempting to celebrate their endurance instead of asking why they have to endure them.

I see a similar tension in hemophilia. There are things Jared cannot change about his body. He has learned that fighting those realities will only exhaust him further. In those moments, acceptance, humor, and reframing can be powerful.

At the same time, hemophilia has taught our family to ask questions, explore options, and push for better circumstances when possible. There is wisdom in knowing the difference.

Some things ask us to sit with discomfort because there truly is nothing we can do about them. Other things make us uncomfortable precisely because they should not stay the way they are.

Perhaps resilience is not always about finding a nicer way to think about hardship. Sometimes it means making peace with what cannot be changed. And sometimes it means refusing to reframe the problem, because the problem needs fixing.

We do not always need a better way to look at hardship. Sometimes we need a better reality.

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 consult your physician or another qualified healthcare 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.