HemoWife - a Column by Allyx Formalejo

Living in the Philippines has shown me how differently people understand illness depending on where and when they grew up. In many rural provinces, even something as common as high blood pressure gets mismanaged. Doctors may not have specialized training. Medical equipment is scarce. And reliable health education often depends…

When people hear the word “hemophilia,” they usually picture bleeds, factor infusions and other treatment routines, and trips to the hospital. Those things certainly shape the condition, but they’re not the whole story. Over the years, I’ve noticed something that feels harder to explain, yet…

When I look back on the things my husband, Jared, and I did in our 20s, I sometimes wonder how we managed to get through them without more emotional or physical scars. We were young, impulsive, and convinced that nothing too serious could happen as long as we “managed things…

I recently spent an afternoon with a group of parents raising young adults with hemophilia. They were part of a newer generation, people who grew up with a little more information, a little more community support, and slightly more medical options than what my husband, Jared, had access…

As we observe National Family Caregivers Month, I’ve found myself reflecting on a column I wrote in which I admitted that the word “caregiver” never quite fit me. That piece was about rejecting a label that flattened our dynamic into something one-directional. But there’s another truth I didn’t explore…

My husband, Jared, was 11 when hemophilia changed the course of his life. He wasn’t doing anything reckless — just being a boy, jumping around on his bed. Then came the misstep, the fall, the blow to his head. He brushed it off, not realizing that a slow, dangerous…

When people find out that my husband, Jared, has hemophilia and epilepsy, they often say things like, “You’re so strong,” or, “You’re such an inspiration.” He usually smiles politely, then tells me later, “I’m not special. This is just my normal.” That line…

I’ve lost count of how many times I’ve seen phrases like “victims of hemophilia” or “afflicted with hemophilia” in local news articles. Sometimes the phrase is “suffering from hemophilia.” To many readers, these words might sound sympathetic — even caring. But to those of us…

Most people living with chronic illness wrestle with difficult emotions at one point or another, such as frustration, fear, guilt, or helplessness. My husband, Jared, is no exception. Living with hemophilia B — and later epilepsy as a complication from a brain bleed — means constantly negotiating what he…

Scarcity mindset is the belief that something you rely on will one day run out. It’s most often talked about in the context of money, which resonates with me deeply. As a neurodivergent person married to someone with hemophilia, money has always felt like one of my shields…