Language matters in hemophilia, because we’re more than a label

When you live with a bleeding disorder, you quickly learn that the words people use matter almost as much as the treatments themselves.

I’ve been called a “carrier” and a “hemophiliac,” and told that my condition was “mild” or “moderate,” as if these words fully described the challenges I’ve faced. Each label carried weight that sometimes was validating and often was minimizing. In our community, language shapes identity, how doctors view us, and even how we see ourselves. It can lift us up, or it can push us to the margins.

For many women, being called a “carrier” feels like being pushed to the sidelines. The term ignores the fact that many of us bleed, bruise, and face the same risks as men with hemophilia. Over time, some women have begun identifying as “symptomatic carriers” or simply as “women with hemophilia” to claim their place in the community and in medical care. The words we use determine whether we feel recognized or erased. Campaigns like the World Federation of Hemophilia‘s “Access for all: Women and girls bleed too” give language to something many of us had known in silence: We weren’t invisible; we’d simply been overlooked.

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At times in my own journey, doctors focused on my von Willebrand disease diagnosis. When they later confirmed that I also had mild hemophilia B, I thought it might finally validate my experience. Instead, the label created another obstacle. “Mild” didn’t mean my bleeds weren’t real or that surgeries and injuries weren’t risky. It became a word I had to constantly push against, proving that my needs deserved attention.

These labels — “mild,” “moderate,” and “severe” — lead to unintended consequences. They describe factor levels but don’t capture the realities of living with a bleeding disorder. Many people don’t bleed according to their label. For example, someone labeled “mild” may still face serious complications during a surgery or childbirth. On the other hand, a “severe” diagnosis doesn’t mean daily life is unmanageable, especially with today’s advancements in treatments. While these terms are medically useful, they can minimize or distort the lived experience of the person behind the label.

Hemophilia B is far less common than hemophilia A. Because of this, I’ve sometimes felt even more misunderstood. To make things clearer, I started using the words “factor IX deficient” instead of simply saying “hemophilia.” That shift wasn’t only about identity; it was practical. In an emergency, it helps ensure the correct medication is given, because treatments for hemophilia A (factor VIII) and hemophilia B (factor IX) are not interchangeable. In this case, choosing my words carefully isn’t just about feeling seen; it could be lifesaving.

The power of words shows up in everyday medical care, too. I’ve had doctors in the emergency room dismiss my bleeding history because they saw the word “mild.” Others have brushed off my symptoms by insisting I was “only a carrier” — as if women couldn’t possibly have hemophilia. Each time, it chipped away at my confidence. But I’ve also had moments where a healthcare provider asked me directly, “How do you want me to describe your bleeding disorder?” That single question shifted everything, because it gave me a voice in my own care.

The longer I live with hemophilia, the more I realize that language isn’t stagnant. It can grow and change, just like our understanding of this disorder has. I no longer let words define me. Instead, I choose to call myself what I am: a woman with hemophilia. My hope is that, as a community, we continue to listen to each other and honor the words that feel true to our experiences. Because when we choose language that respects and includes everyone, we create space for healing, dignity, and belonging.

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.