Paying attention to how we treat children with an invisible illness

Before I ever met my husband, Jared, he had learned to adapt well to having severe hemophilia B and seizures. But one moment from his childhood still finds its way back to him. On the first day of fifth grade, his teacher told the class there would be a “special student,” in those exact words. The teacher then asked Jared to stand and explain his condition — without any kind of a heads-up.

Jared didn’t mind talking about his hemophilia, but he simply didn’t see this coming. There was also the challenge of having to make sense of an invisible condition to a group of kids his own age. Standing there, he had to find the words on the spot. How could he explain something even adults struggle to understand, in a way that a room full of 11-year-olds could grasp?

Looking back, it’s clear that his teacher didn’t fully understand hemophilia, either. But instead of taking the time to learn, that responsibility was given to an 11-year-old who didn’t yet have the language for it.

Jared did his best. But even then, he could feel a shift in the room. It cemented his identity as “the odd one out” and left him feeling exposed in a way he hadn’t chosen.

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The problem with unwanted attention

It didn’t end there. In the weeks that followed, attention kept finding its way back to him. During one school assembly, his teacher randomly handed him a “happy slip” for being well-behaved. But so was everyone else. Jared remembers standing there, holding something he didn’t feel he had earned.

Moments like that happened more than once. Small, well-meaning gestures kept setting him apart, even when all he wanted was to blend in.

It didn’t take long for the other kids to notice. To them, Jared wasn’t just a classmate anymore. He was the one who got called out, pulled aside, and rewarded for things everyone else was doing, too.

Hemophilia is an invisible illness. There was nothing they could see that explained why he was being treated differently. Back then, in the early 2000s, there was far less awareness — and even less understanding — of what invisible conditions look like. What they saw didn’t look like a medical condition. It looked like favoritism.

That misunderstanding created distance. Then, slowly, it turned into something else. The teasing started, along with the comments — the kind of attention no kid wants.

I don’t think his teacher meant any harm. If anything, it might have been an attempt to protect him — to make sure the class understood, to keep him safe in a way that made sense to an adult. But good intentions don’t always translate the way we hope they will. In trying to look out for him, the very thing meant to support Jared ended up setting him apart.

What support should look like

It took something serious for that understanding to finally come. After Jared experienced a brain hemorrhage that caused epilepsy, the way people saw him began to shift.

Suddenly, there was context. The thing that had once been invisible was now impossible to ignore. And with that came a kind of awareness that hadn’t been there before. Only then did they begin to fully understand what was at stake.

But it’s hard not to wonder why it took something so extreme for that understanding to happen in the first place.

Hearing Jared tell this story changed the way I think about what support is supposed to look like. As adults, we often feel responsible for explaining, protecting, and preparing the world for someone with a condition like hemophilia. But in doing so, we sometimes forget that it’s also our responsibility to learn, so that we’re not placing the burden on a child who is still trying to understand things themselves.

Jared didn’t need to be singled out to be safe. He needed to be understood and to have a say in how his story was shared. When awareness comes without context, and attention without consent, it doesn’t always create empathy. Sometimes it just creates distance. And that distance doesn’t just affect how a child is treated; it shapes how they see themselves.

Especially now, as Mental Health Awareness Month approaches in May, I’ve been thinking more about the parts of living with hemophilia that aren’t always visible. It’s not just the physical risks, but also the emotional ones — the ways a child’s sense of belonging, confidence, and identity can be affected long before anyone notices.

For parents and teachers, that balance matters more than we might realize. Protecting a child’s physical health is critical. But protecting their internal world — their mental and emotional well-being — is just as important. No child should have to stand in front of a room and carry both of those things alone.

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.