Health is not defined by a diagnosis

When I was diagnosed with hemophilia B and von Willebrand disease in the 1970s, I was just 10 years old. Back then, most people didn’t believe girls could have hemophilia. I was told that my “deep blood” didn’t clot properly and sent on my way. Bleeding disorders didn’t run in my family, so my parents were completely clueless about what to expect.

For a long time, I let my bleeding problems shape how I saw myself: disabled, fragile, different. But eventually, I realized that my bleeding disorders may explain some of my challenges, but they don’t define my worth, my strength, or the fullness of my life.

In high school, my diagnosis meant I was barred from gym class. I loved swimming and was good at it, but I wasn’t allowed to compete with the varsity swim team. I could swim with the junior varsity team only. The decision was made by school administrators who didn’t understand my condition and never asked how I felt or what I was capable of.

Recommended Reading

June 3, 2025 Columns by G Shellye Horowitz

What decades-long diagnosis delays mean for women with VWD

That restriction stayed with me — not just physically, but emotionally. It planted the idea that I was limited. I don’t think I’ve ever unlearned that.

Even now, I’m often met with disbelief. Mostly I’ve stopped telling doctors I have hemophilia, because they don’t believe me. Instead, I say I have a bleeding disorder. Rarely does anyone ask for specifics. It’s a quiet form of self-protection, a way to avoid the blank stares, the dismissive comments, or, worse, the assumption that I’m exaggerating. No one should have to shrink their truth just to be treated with respect.

You deserve care because you’re bleeding

You’re more than numbers on a lab report. You’re not just factor levels, platelet counts, or insurance codes. You’re a whole person with passions, creativity, relationships, and resilience.

And sometimes, we spend years chasing a diagnosis, looking for a name that will finally validate our pain. But here’s the truth: While a correct diagnosis can open doors, what matters most is that you’re heard, believed, and treated. Treatment shouldn’t hinge on a specific label. You deserve care because you’re bleeding, not because your factor level fits a textbook definition.

That’s not to say a diagnosis isn’t important. It is. It provides access to treatment and helps us understand our bodies. But a medical label should never be used to limit someone’s potential or silence their experience.

So what can we do?

• Speak up. Share your story. Not just the medical parts, but the human ones.
• Listen to others, especially those whose diagnoses may be rare or misunderstood.
• Push back against systems that try to define us too narrowly.

Your health includes your mental and emotional well-being, your sense of belonging, and the way you move through the world. And yes, your diagnosis matters too, but it’s not the whole story.

Let’s remind each other that a diagnosis can inform your care, but it should never limit your life.

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.