What women with bleeding disorders are prepared to face
It's shocking that women are prepared to die due to lack of care
There have been many moments in my life when I’ve blatantly thought, “If I die bleeding, I die bleeding.” Of course, I didn’t want to think that, but I felt like I had no other choice.
When doctors brush off your bleeding, when you’re told, “You’re “just anemic,” when specialists insist that “women don’t have hemophilia and they aren’t bleeders” — it wears you down. It’s exhausting and infuriating. And for countless women with bleeding disorders, it’s also terrifying.
I’ve heard the same heartbreaking words — “If I die bleeding, I die bleeding” — from many women who, like me, have already been diagnosed. That statement isn’t hyperbole; it’s something someone says when the fight becomes too much, when they’re so worn down by the medical system that they stop trying. When that happens, all anyone can do is hope that the immense suffering might at least teach doctors something so that the next woman who comes along won’t have to endure the same hardships.
When I first met Kayla Mack, who has type 3 von Willebrand disease, a severe form of the condition, she was convinced that she would bleed to death in the middle of an aisle at the grocery store. On Facebook, she wrote, “I’m getting very afraid that the day will come [when] I have a neck or brain bleed and will die before [ER personnel] get in motion to save me.”
I’ve spoken with women who’ve spent years, and sometimes decades, seeking a diagnosis. Some have bled for days after childbirth, minor injuries, or surgeries, only to be told they were exaggerating. Some have fought for treatment in emergency rooms while actively bleeding, only to be ignored.
Medical gender bias
I know several men with hemophilia, but I’ve never heard them say things like this. Perhaps it’s because they don’t bleed every month, they don’t face the risks of childbirth, and they aren’t dismissed, ignored, or subjected to the gender bias that runs deep in our medical system here in the U.S.
Medical gender bias can be life-threatening. Despite increased awareness, many doctors still fail to understand that hemophilia, von Willebrand disease, and other bleeding disorders affect women, too. They assume that excessive bleeding is “just heavy periods” or “normal for women.”
Many women aren’t diagnosed until adulthood after years of suffering, unnecessary procedures, and untreated complications. Even with a diagnosis, women often struggle to access factor replacement therapy or other treatments that men receive without question. Constantly fighting to be heard takes a mental and emotional toll, leading to anxiety, hopelessness, and medical trauma.
What needs to change?
Medical education must catch up to reality. More healthcare providers need to understand that bleeding disorders don’t discriminate by gender.
Women must be included in research as well. Historically, women have been excluded from clinical trials for bleeding disorders, creating a massive knowledge gap.
Self-advocacy is essential, but it shouldn’t be this hard. Patients need to be armed with knowledge, but the burden shouldn’t fall solely on us. The system needs to listen, too. Medical professionals must believe women when they say they’re bleeding too much, too often, and for too long.
I don’t want to die bleeding. None of us do. But until healthcare providers start taking our symptoms seriously, that fear will always linger. It’s time for change — not just for us, but for the generations of women who come after us.
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.
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