‘It matters to me’ is all the reason I need for the life I choose

I don’t usually ask myself whether I want something. I ask whether I can justify wanting it.

Is it practical? Financially responsible? Useful enough? Meaningful enough? Will I regret spending the money? Could I explain the decision to someone else without sounding irresponsible?

I suspect many care partners know this feeling. When you’re used to anticipating emergencies, managing uncertainty, and thinking three steps ahead, careful decision-making becomes almost automatic.

Somewhere along the way, I stopped noticing the difference.

For years, I thought this was simply what adulthood looked like. Maybe it still does, to some extent. But lately I’ve started to wonder whether those instincts spilled into places they were never meant to go. I wondered whether I’d started putting my own joy on trial, in the name of “responsibility.”

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When responsibility becomes reflex

My husband has severe hemophilia B and epilepsy resulting from a childhood brain bleed. Over the years, we’ve learned to think ahead. We stay on top of his factor needs. We keep epilepsy meds stocked and plan ahead for trips. We watch out for rogue bleeds and seizures and try to stay calm when they occur. We consider the financial impact of unexpected emergencies. We adjust plans when circumstances change.

Preparedness isn’t pessimism. It’s one of the ways we care for the people we love.

The habit of anticipating consequences has served our family well. It has helped us build a life around realities we cannot ignore. But I don’t think I realized how deeply that instinct had settled into me.

Eventually, I stopped applying it only to emergencies. I started applying it to everything else.

A hobby had to become productive. Rest had to be justified as self-care. A purchase needed practical value. Even small pleasures had to prove they were meaningful enough to deserve their place in my life.

I rarely asked, “Do I want this?” Instead, I asked, “Can I defend it?”

Don’t measure life on a spreadsheet

People affected by hemophilia understand better than most that life can change without warning.

We celebrate milestones because we know they aren’t guaranteed. We encourage one another not to let fear make our worlds smaller. We remind each other that living with a bleeding disorder isn’t just about preventing bleeds. It’s about building a life that feels worth living.

And yet, somewhere along the way, I think many of us become so accustomed to explaining our choices that we forget we’re allowed to make some simply because they matter to us.

I’m not talking about recklessness. Bills still have to be paid. Responsibilities still matter. Consequences are real. But meaningful lives aren’t built solely from efficient decisions.

Some things don’t improve productivity, optimize our schedules, or offer a return on investment that fits neatly into a spreadsheet. Sometimes, they’re simply things that make us feel more like ourselves.

A favorite coffee. A piece of jewelry. Getting a tattoo that reminds you who you want to be. Taking the scenic route. Curating decorations and knickknacks from thrift shops and novelty stores. Choosing something beautiful when something merely functional would have done the job.

These things aren’t frivolous because they don’t generate measurable outcomes. They are part of what makes us human.

Then I realized something almost embarrassing. If I’d always believed life should be judged by practicality, I wouldn’t be living the life I have now.

Falling in love with my husband wasn’t the most practical decision I could have made. Choosing a life that would include hemophilia, epilepsy, uncertainty, emergency rooms, and more planning than I’d imagined certainly wasn’t the easiest one.

If someone had reduced that decision to a spreadsheet, they probably could have built a compelling case against it.

The truth is, I didn’t just choose this life once. I continue to choose it, over and over again. Every time we adapt, compromise, and build a life around realities we didn’t ask for. None of that is particularly efficient. None of it would earn top marks on a spreadsheet. But it’s our life, and it means something to me. (I also cannot deny that it has contributed to my personal growth.)

Maybe that’s the permission I’ve been looking for all along. Not permission to stop being responsible or to abandon the habits that have served our family well, but permission to remember that responsibility isn’t the only thing that gives a life its value. Some of the most meaningful choices we’ll ever make can’t be justified by practicality alone.

Because “it matters to me” is a complete reason.

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.