Supporting mental health when hemophilia treatment isn’t guaranteed

A recent study found that people with hemophilia who report better mental health may be more likely to adhere to their prophylactic treatment. It’s a compelling idea — that mental well-being can influence how consistently someone follows a care plan.

But as I read through it, I couldn’t help but pause. What about the people who don’t have access to prophylaxis at all?

The study looked at a specific group of patients already receiving treatment, most of whom were considered adherent. In that context, the connection makes sense: When you feel better mentally, it’s easier to keep up with something that already exists in your routine.

But for many people around the world, treatment isn’t a given. And when that foundation is missing, the conversation around mental health shifts entirely.

Recommended Reading

Sept. 15, 2025 Columns by Allyx Formalejo

Hemophilia care in the Philippines: Stories from the provinces

When mental health isn’t built on stable ground

In communities where access to consistent care is limited, the challenges aren’t only physical. More bleeds can mean missed school, missed work, and fewer chances to participate in everyday life. Over time, those missed opportunities add up. They affect independence, relationships, and the sense of what’s possible.

Mental health, in that context, isn’t just about managing stress or staying motivated. It’s shaped by uncertainty — by what happens when your body doesn’t cooperate and the support you need isn’t always within reach.

Even in our home, care hasn’t always been consistent or predictable, and that alone can take a toll. Mental health hasn’t been a simple equation. My husband, Jared, lives with both hemophilia and epilepsy, a combination that brings its own unpredictability.

There have been stretches when things felt steady, and others when they didn’t — when, suddenly, bleed frequency changed, factor products weren’t readily available from our usual suppliers, or the weight of managing multiple conditions made everything feel heavier than usual. And then there were periods when pain seemed to take over entirely, shaping Jared’s mood, energy, and even how he experienced the day, like during his recent burn injury, when it was constant and all-consuming.

Mental health isn’t unfamiliar territory for me, either. I live with attention-deficit/hyperactivity disorder and have been diagnosed with bipolar II disorder, so I know how much things can shift — sometimes gradually, sometimes all at once. It’s part of why I read studies like this one with both interest and caution.

Because in real life, mental health isn’t always something you can optimize. Sometimes, you accept that your mental health baseline may look different from day to day, and you learn to work around it.

Resilience as a balm and a shield

When mental health isn’t built on stable ground, people still find ways to hold themselves together. Sometimes, that’s called resilience.

In places like the Philippines, where we live, the word can feel complicated. It’s often used to praise people for enduring difficult circumstances — sometimes in ways that gloss over the systems that made those circumstances difficult in the first place.

I understand that discomfort. But I’ve also come to see that resilience, on a personal level, can be something else entirely. Sometimes, it’s what’s left when better options don’t exist.

Resilience doesn’t fix the problem. It doesn’t replace access to treatment, and it shouldn’t have to. But in the absence of ideal conditions, it can become a kind of balm — not because it makes the situation OK, but because it helps you keep going anyway.

The study highlights how mental health can support treatment adherence. But for many, the harder question is what supports mental health when treatment itself isn’t guaranteed. And sometimes, the answer isn’t found in systems or studies, but in what people quietly build to survive what’s missing.

For me, it often comes down to the small things that make up a day — what we’re able to do, what we’re still able to enjoy, who we get to spend time with. It’s not a complete solution, but on most days, it’s enough to hold on to.

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 seek the advice of your physician or another qualified health 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.