Who am I? A woman with a bleeding disorder. See me. Believe me. Treat me.

Not long after I started working at the Hemophilia Federation of America (HFA), the organization hosted a congressional reception to help raise awareness about bleeding disorders.

The bleeding disorders community must maintain its visibility among government decision-makers who help address important issues, such as ensuring our access to the medications we need.

I was excited to attend my first congressional reception as a staff member and person with hemophilia A. The event was virtual because it was 2021 and COVID-19 was still a concern, but I still intended to be ready, and I debated for days about what I was going to wear. Red for bleeding disorders? Jewel tones because I look best in them? Should my hair be left long, or would I look more professional if I put it up in a neat, tidy bun? What necklace should I wear?

I got up extra early to prepare, set up my workstation to ensure there would be no interruptions, and had water and a snack next to me, so I wouldn’t have to get up. It was exciting, and I was ready to represent HFA! But once I signed onto Zoom and was admitted to the “Zoom room,” all my expectations fell flat. The congressional reception was a webinar, and only highlighted people would be shown on the screen. I could have shown up in my pajamas, and no one would have known.

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Wanting to be seen

This has happened to me a few other times in my career, and I now laugh when it does. But it’s also a good reminder about how much time and effort I put into dressing up, wanting to make the best possible impression. Perception is everything, and I am often terrified of being mislabeled or misunderstood. It shouldn’t have to be this way.

I find myself doing the same thing in medical settings. I’m sure this comes from years of medical trauma. As a woman with hemophilia, I have constantly fought to be heard as my active bleeds were minimized or dismissed. I couldn’t possibly be bleeding, I was often told — I was a woman! Women “did not get hemophilia.” This gaslighting lasted for years. The message was always the same: I couldn’t possibly be struggling as much as I claimed to be. My interpretation had to be wrong. Maybe I wasn’t actually bleeding. I was.

As I struggled to be validated, I began dressing nicer for medical appointments. Wearing business attire became a security blanket for me, and still is. It makes me feel as though I will be listened to and believed — more so than if I show up in jeans and a T-shirt. And even though it shouldn’t matter, sometimes I feel it really does make a difference in how seriously I am taken.

See my bleeds, not my clothes

I’ve even gone to the extreme of dressing up for emergency room (ER) visits, which is really crazy. If I need to go to the ER, the only thing I should be worried about is my health. Pausing to get dressed up is insane and shouldn’t even cross my mind. It just shows how much fear I have after years of being told that women cannot have hemophilia — including at multiple ERs!

Most of us want to make good impressions. I really want to be seen and heard, believed and understood, and there is nothing wrong with wanting to present ourselves well. Yet, there are times when it should not be our main focus. When we are fighting for access to care, the only important thing should be our lived experience with hemophilia, not if we are male or female, how we look, or what we wear.

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 consult your physician or another qualified healthcare 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.