You know your body best because you live in it every day
Self-advocacy is crucial for those of us with bleeding disorders
My primary care provider recently retired and was replaced by a doctor new to my area. As I prepared for our first meeting, I reflected on how I usually approach my bleeding disorders. Typically, I don’t even mention hemophilia to a primary care doctor. I mutter terms like “bleeding disorder” or refer to von Willebrand disease. However, as an advocate for women with hemophilia, I decided to test the waters and boldly told my new doctor that I have the condition.
To my surprise, he accepted it without hesitation. He even mentioned that he was familiar with hemophilia, as he’d treated another patient with it in his past town. There was no questioning or disbelief about a woman having the disorder, which was refreshing and validating. “You know your body best,” he said. “I will take your lead on this.”
One of the most fundamental truths about our lives is that we know our bodies better than anyone else. We live in them and experience every sensation, every change, and every sign that something might not be right. Yet when it comes to healthcare, this innate knowledge is often overlooked or dismissed by the very people who are supposed to help us — the doctors we trust with our well-being.
A story
I know someone with “mild” hemophilia A who’s a strong advocate for women in the hemophilia community. Despite the “mild” label, her bleeding issues are far from minor. She’s on prophylactic treatment, regularly infusing herself with clotting factor to prevent bleeds, but she still experiences frequent bleeding episodes. She knows something isn’t right; she lives in her body every day, after all. Unfortunately, her doctor refuses to run further tests.
This story isn’t just hers; it’s a story many women — and indeed, many patients — know all too well. It’s the frustration of being gaslit, having our concerns minimized, and being told that the symptoms we experience daily are somehow not valid. It’s the fear that comes with knowing something is wrong yet not being able to get the care you need because a medical professional has decided they know your body better than you do.
My friend’s experience is a powerful reminder that we, as patients, must be our own advocates. We must trust our instincts and fight for the care we know we need. It’s not easy and shouldn’t be this way, but our voices matter. If we don’t speak up, who will?
Time to change the narrative
It’s time to change the narrative in healthcare. Doctors are experts in their fields, but we’re the experts on our own bodies. When these two forms of expertise come together, true healing happens. We need doctors who listen, respect our knowledge, and work with us as partners in our health, not as gatekeepers.
So the next time you’re sitting in a doctor’s office, remember: You know your body best because you live in it every day. Your experiences, feelings, and pain are real, and they matter. Don’t let anyone make you doubt that. And if you find yourself facing a doctor who doesn’t listen, don’t be afraid to seek a second opinion or even a new doctor. Your health is too important to leave in the hands of someone who doesn’t respect your voice.
Let’s support one another on this journey. Please share your stories, uplift our community, and remind one another that we have the right to be heard, respected, and properly cared for — because at the end of the day, we’re the ones who live in our bodies, and we know them best.
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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