For women with hemophilia, speaking up is an act of courage

When you live with a bleeding disorder, you get used to explaining yourself. You learn to walk into an emergency room ready with a treatment letter and a mental script of your medical history. You learn to minimize pain, explain bruises, fight for treatment, and reassure medical professionals that, yes, women really can have hemophilia.

But the part no one prepares you for is how easily your voice can be dismissed — not just in exam rooms, but in everyday life. For women with bleeding disorders, speaking up is an act of courage. It always has been.

For decades, many of us were told we were fine when we weren’t. We were talked over, brushed aside, or labeled “just a carrier.” Our symptoms were minimized. Our concerns were ignored. And for generations, too many women never had the chance to tell their own stories.

That’s why finding my voice — and holding on to it — has become one of the most essential parts of my advocacy.

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Finding your voice

The truth many of us don’t talk about is that sometimes, even the strongest advocates lose their voice. Not literally, but emotionally; quietly and slowly.

Living with a bleeding disorder can leave you worn down by the constant need to explain, defend, justify, and educate. Over the years, that can take a significant toll.

One dismissive comment from a provider or family member, one moment of being talked over, one person minimizing your symptoms, one round of “you’re just a carrier,” and suddenly, without even noticing, your voice gets a little smaller. You stop sharing certain details because you don’t want to fight. You soften the truth because you’re tired of being doubted. You tell yourself it’s not worth the energy. You start to forget the power your voice once had.

I’ve felt that silencing — that slow erosion — more times than I care to admit.

If you’ve ever felt yourself losing your voice, you’re not alone. Every woman with a bleeding disorder knows what it feels like to doubt herself after years of not being believed; to second-guess her symptoms because no one took them seriously; to feel invisible in a medical system that wasn’t built with her in mind.

But losing your voice doesn’t mean it’s gone. It means it’s waiting for someone to listen, waiting for you to trust it again, and waiting for the moment when you decide your story matters too much to stay quiet. And that’s precisely why storytelling matters so much.

Our stories educate in ways clinical guidelines cannot. They reveal the nuances behind the lab results. They show where systems fail us and where humanity and compassion can save us. They give voice to the people who don’t feel brave enough to speak up. They validate the woman who has spent her entire life being told she is “just a carrier,” even as she battles iron deficiency, heavy bleeding, and dismissive medical care.

When we share our stories, we aren’t just advocating for ourselves. We’re advocating for every girl who will come after us — the ones who deserve to grow up already knowing their diagnosis, their rights, and their worth. Even when it’s uncomfortable, someone doesn’t understand it, or the world tries to quiet it.

Patient voices are not optional; they’re essential, and no one — not a doctor, a colleague, or a stranger — gets to take that voice away.

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.