Medical gaslighting can take a toll on women with bleeding disorders

Even now, I hesitate to tell doctors I have hemophilia.

I’ve lost count of how many times I’ve been met with blank stares, skepticism, or outright dismissal. Instead, I’ve learned to say, “I have a bleeding disorder.” It’s safer. It avoids the uncomfortable silence, the subtle smirk, or the long pause followed by, “But women don’t have hemophilia.”

That’s medical gaslighting — when a healthcare provider downplays or disregards your symptoms, or makes you feel like you’re exaggerating. It’s real. And for people with rare diseases, especially women, it’s far too common.

For instance, I once sought medical care for ongoing low blood pressure and dizziness. I’d already taken steps like increasing fluids, adding salt to my diet, and wearing compression stockings, but the symptoms persisted. When no additional evaluation or follow-up was offered, I felt discouraged and unsure of what to do next.

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But that wasn’t new. When I was a child, I was treated for multiple bleeding disorders. Doctors took my symptoms seriously. But when I became an adult, things changed.

Suddenly, I was told women couldn’t have hemophilia. That I didn’t need treatment for it. That my bleeding wasn’t caused by my factor IX deficiency. The care I’d once received vanished. Not because my bleeding symptoms had changed, but because doctors’ perception of me had.

Medical gaslighting nearly cost me everything

For years, I received treatment for von Willebrand disease to manage heavy menstrual bleeding, but my symptoms persisted. I consistently expressed concern that something wasn’t right, despite following the recommended care plan. Over time, I developed iron-deficiency anemia that did not improve with supplements or continued treatment. It was a confusing and emotionally difficult period, made more challenging by feeling like my concerns weren’t being fully acknowledged.

Eventually, I also received treatment for my other bleeding disorder: hemophilia B. But it took decades of fighting to be heard, of being doubted, of suffering needlessly. I even lost my fertility because of heavy bleeding.

I wasn’t imagining the heavy periods, the joint pain, or the fatigue. I wasn’t making up the days I lost to heavy bleeding. I wasn’t weak. I was bleeding. And I deserved to be treated accordingly.

Medical gaslighting doesn’t just delay care; it erodes your confidence and makes you question your own body. It teaches you to stay quiet rather than advocate for yourself. And it makes you feel alone in your struggle.

We shouldn’t have to shrink our truth just to be taken seriously. We know our bodies. We know our symptoms. And we deserve to be heard.

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.