Finding our balance means taking turns carrying what the other cannot
Over the course of a relationship, the roles will likely change
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The scream echoed through our house, loud enough to rattle the windows. For a moment, I wondered what the neighbors must have thought.
My husband and I were walking up the stairs when he accidentally scraped his hand against the railing. It wasn’t a particularly hard hit. Most people probably wouldn’t have thought twice about it. But I knew immediately what had happened.
About six months ago, he badly burned that same hand during a seizure. His epilepsy traces back to a brain bleed he experienced as a child that was prolonged due to severe hemophilia. Even now, after months of healing, the skin on his hand remains painfully fragile. The smallest scrape can peel it open again, sending him back to wound care and another long stretch of recovery.
Standing on those stairs, I realized something. The scream wasn’t just about the scrape. It was about everything that came before it.
When setbacks keep repeating
Living alongside hemophilia has taught me that people rarely react only to what’s happening in front of them. Sometimes they’re reacting to years of pain, disappointment, and having to start over.
I’ve come to recognize that particular kind of frustration. I know what it feels like to think a bleed is finally behind us, only for it to flare up again and send us back to the beginning. I know the relief of watching an injury slowly heal, only to see one small accident undo weeks of progress. I know how exhausting it must feel when your own body seems determined to keep moving the finish line.
One of the hardest things about hemophilia is that its consequences don’t always end with the bleed itself. Sometimes they echo through the years in ways neither of you could have imagined. A childhood brain bleed becomes epilepsy. Epilepsy leads to a burn injury. The burn becomes months of painful recovery. One setback blends into the next until it’s difficult to tell where one ends and another begins.
I understand where the anger comes from. But understanding someone’s anger doesn’t mean you stop being affected by it.
For a long time, I believed empathy meant absorbing whatever hemophilia brought into our home. If I understood why my husband was frustrated, then maybe I wasn’t supposed to need anything different. But lately, I’m learning that’s not what empathy asks of us.
Compassion isn’t the absence of boundaries. Sometimes boundaries are what allow compassion to survive. I can understand where the anger comes from while still longing for a calmer home. I can love my husband deeply while acknowledging that living beside chronic frustration affects me, too.
Finding our way back
Finding that balance isn’t always easy. I recently came across the idea that relationships aren’t always 50/50. Sometimes one person simply has more bandwidth than the other. Whether that’s 80/20, or 60/40, or somewhere in between isn’t really the point. The point is that, over the course of a relationship, those roles will likely change.
When hemophilia weighs heavily on my husband, I know there are seasons when I’ll carry more of the emotional load. But I’m equally grateful that I don’t carry it alone.
One thing I appreciate about my husband is that he recognizes how pain and frustration can change him. But that wasn’t always the case. When we were younger, his frustration sometimes came out in ways that hurt the people closest to him. Looking back, I don’t know exactly what changed. Maybe part of it was simply growing older. Research suggests that the parts of the brain responsible for judgment and emotional regulation continue developing well into our early 30s. Maybe it was experience, self-awareness, or years of learning healthier ways to cope. Most likely, it was all of those things together.
Today, when everything feels like too much, he’ll often step away instead of letting the tension consume our home. He knows his frustration affects both me and our daughter, and he doesn’t want us carrying the weight of it, too. He apologizes when he needs to. And when the difficult days pass, he finds his way back to us — usually with a sarcastic joke, a laugh, or the lighthearted version of himself that pain sometimes buries but never takes away.
None of that erases the hard days, but it reminds me that we’re not on opposite sides. We’re on the same side, trying to navigate a condition that has shaped both of our lives in different ways.
Maybe that’s what balance looks like in a marriage touched by hemophilia. Not the absence of anger or frustration. Just two people continually finding their way back to each other, taking turns carrying what the other cannot.
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.
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