I am more than my husband’s hemophilia

People have often known me by a role. The former gifted child (now neurodivergent adult). The wife. The mother. The HemoWife.

Each one belongs to my story. Some have brought me work I care deeply about. Writing about life with my husband’s hemophilia has given me a way to connect with people who understand parts of our experience. But no role contains all of me.

I love my husband. I also want a life that belongs to me. I’m writing this for other spouses who may feel something similar: I want you to know that these feelings can be part of loving someone with a chronic condition, and that you’re not alone in having them.

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The roles people see

Hemophilia is part of our shared life. Infusions and injuries can affect our plans, and loving someone with a chronic condition can mean paying attention, adjusting, and thinking ahead. I have written about being my husband’s care partner rather than simply his caregiver, about feeling lonely during his bleeding episodes, and about the caregiver switch flipping on. Those experiences matter, but they are not the whole of my life.

I came into this marriage with an origin story of my own. I have my own baggage and things I’m still learning to carry and work through. I have my own boundaries, too. Growing older has made me appreciate that my limits deserve consideration. I want to live inside my relationships without disappearing into them. I believe it’s possible to love my family and still have a life that is mine to inhabit.

A life beyond hemophilia

I want to meet people without my husband’s illness being the first thing we share. I want to travel, learn languages, go to concerts, follow a passing curiosity, and make new friends while keeping the old. I want to write about experiences beyond my own. I want some days to be ordinary and enjoyable without turning them into a lesson about resilience or care. (Somehow, though, I still end up blurting out an “inspirational story” and cringing a little afterward.)

I can share those experiences with my husband and daughter, or I can have some of them by myself. What matters is that they have room in my life. Wanting that doesn’t diminish what I feel for my family. It recognizes that my desires and friendships matter, too.

Making room for myself

I do find meaning in being a HemoWife. My experiences have given me a perspective and a voice I might not otherwise have found. They have become powerful fuel for my writing and advocacy. I’ve written about thriving as a HemoWife, and I’m grateful for the connection and purpose this work has brought me.

But I also want meaningful things that have nothing to do with my husband’s condition. I want the freedom to follow interests that aren’t shaped by hemophilia, and to be a person whose life is allowed to be more than useful to others.

Having more distance from some expectations has helped my husband and me make more room for ourselves. We can care about our family and still consider what we want for our own lives together. That space has helped me remember that I am not only someone’s wife, someone’s mother, or someone who writes about hemophilia. I am also the person who was here before those roles, and who continues to grow beyond them. I can love my family, care about the life we share, and keep becoming myself.

If you’re a spouse who has felt torn between caring for someone you love and wanting a life of your own, I hope you can recognize yourself here. You can love your family and still have limits, friendships, desires, and a story of your own. You are not alone in needing room to be a whole person.

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.