I’d rather be a good partner than look like a good caregiver

Somewhere along my journey as a “HemoWife,” I realized that being a good care partner and looking like one were two different jobs. One mattered to my marriage. The other seemed to exist largely for the benefit of an imaginary audience.

We have a familiar image of the ideal caregiver: always attentive, constantly available, and unquestionably devoted. Someone who puts another person’s needs ahead of their own, without complaint. There’s something admirable about that kind of selflessness. But when it becomes the standard we’re expected to live up to, it can also be exhausting.

My husband, Jared, has severe hemophilia B and epilepsy. While caring for him is part of our marriage, I’ve never been fully comfortable with the caregiver label, as it can imply a one-sided relationship in which one person gives and the other receives. In reality, Jared takes care of me, too, and our marriage is built on mutual support. Yet even after questioning the label, I realized I still had to unlearn some of the expectations attached to it.

I had to stop asking myself whether I was doing what a good caregiver should do and start asking whether my efforts were actually helping us.

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When helping isn’t always helpful

One thing I’ve learned about living with someone who has a chronic illness is that good intentions don’t automatically translate into good support. I’ve always believed in giving people room to figure things out for themselves. But as a care partner, I’ve sometimes felt pressured to be constantly attentive and ready to intervene, even when I knew stepping back was the better choice. After all, being visibly involved can look more like caring than deliberately stepping back, even when the latter is exactly what someone needs.

Jared is an adult who knows his body and has spent much of his life learning to manage his conditions. He self-infuses, exercises, helps raise our daughter, and contributes to our household. He also has limitations, some of which require us to make adjustments that other families might never have to consider. Sometimes, supporting him means stepping in. Other times, it means giving him room to handle things himself.

This isn’t always easy for me. As someone with attention-deficit/hyperactivity disorder, I have a tendency to become overly invested in solving problems, sometimes even when my involvement isn’t necessary. Combine that with the pressure to look like a responsible care partner, and I sometimes find myself hovering even when I know better.

When you love someone with a serious medical condition, caution is understandable. But it can become restrictive when it leaves little room for the other person’s judgment. We’ve learned that living independently with hemophilia involves preparation, realistic risk assessment, and knowing when to ask for help. I can’t protect Jared from every possible difficulty, nor should I make that my life’s mission at the expense of his independence.

After all, I’m his wife, not his keeper.

Choosing what actually works for us

There are times when caregiving demands more. When Jared suffered a serious hand burn late last year, I felt the caregiver switch flipping on. Hospital visits, medical decisions, and his recovery required me to take on more than usual. But what serves us in a crisis isn’t necessarily what we need in everyday life.

I’ve also stopped treating self-sacrifice as proof of love. I can pursue my career, enjoy my hobbies, and occasionally put myself first without neglecting Jared. The things that matter to me don’t lose their value because my husband has chronic illnesses. Nor do I need to take over tasks he can manage simply to prove I’m willing to help.

I’m not suggesting we ignore good advice or refuse assistance. Other people’s experiences can teach us plenty. But our choices must fit our circumstances, not an outsider’s picture of what a devoted spouse should do.

I know some partners provide round-the-clock care and have far less freedom to step back. Their needs and circumstances differ from ours, and I wouldn’t presume to tell them what they ought to do.

What I want other spouses and care partners to know is this: You don’t have to prove your devotion by making your life harder than it needs to be. You can love someone deeply without making yourself indispensable. You can acknowledge their limitations without losing sight of their capabilities.

These days, I’m less interested in looking like a good caregiver than in being a good partner. I don’t need our marriage to look like a beautiful story of sacrifice. I just need it to be a life we both enjoy living.

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.