Sometimes I feel like I don’t belong. I’m a misfit, an imposter.
I feel fine and haven’t had a bleed in almost a month. Do I really have hemophilia? Do I really need to infuse every three days?
Women with hemophilia seem to struggle with these feelings more often than men with hemophilia. Reasons abound for the discrepancy among sexes.
Men’s pain is taken more seriously than women’s pain.
Generally in healthcare, the fact that men’s pain is taken more seriously than women’s makes it hard for women to obtain the care they need. It is sad that women’s pain can be written off as hysteria or mental health issues, instead of being properly addressed. I have sought help at treatment centers with pain in my knee that prevented me from walking. I was told it “didn’t sound like a bleed,” yet it only healed when I was given factor replacement.
Monthly bleeding isn’t seen as a problem, even when it is.
Menarche also gets in the way. Women are supposed to get periods and bleed. Many women complain about their periods. However, little is done to distinguish between normal blood loss and a bleeding problem. Understanding whether or not the bleeding is “normal” is not necessarily a topic of conversation. For a great tool to track your bleeding to see if it is normal, check out Hemophilia Federation of America’s Blood Sisterhood app.
Why are all the patient photos of men?
A few years ago, I went to a national conference for bleeding disorders. The first day started with afternoon and evening sessions. I saw a few pre-conference sessions and the opening keynote speech the first day. There wasn’t one photo of a woman with a bleeding disorder. All of the photos were of men.
Conference organizers were great women’s advocates but missed the subtle message they were sending. Such photos have always been of men, so people grow accustomed to them. The only photos of women were as supportive moms or spouses. I believe this is slowly shifting now.
Where are the case studies on women?
Women are addressed in their own conferences and sessions, but not always in sessions with men when mild phenotypes are discussed. In every space possible, men and women with hemophilia must be spoken of together. Talks about mild hemophilia are the natural space to promote more inclusive information.
When clinical examples are given, they often do not reflect me. It is important that examples of women with hemophilia are included in every space where they can naturally be integrated.
Women are missing from hemophilia research.
Research is mostly focused on severe phenotypes (perhaps companies don’t see the growing market of mild phenotypes). For women to feel safer and access the treatment they need and deserve, there must be research on the efficacy of factor replacement products in women.
Tolerating too much pain.
I was told for so long that I was OK and that something was wrong with my head. The bleeding wasn’t addressed or even acknowledged. My pain tolerance grew — it had to for survival. Now, I don’t always recognize bleeds because my pain threshold is off.
Recently, I let a shoulder issue go too far because I minimized the reality of it. I was in some pain, but I could handle it. My doctor was surprised when the diagnosis came back. It was one of the more painful shoulder conditions one can have. My clinical presentation didn’t match the diagnosis because I have learned to tolerate high levels of pain.
I’m owning my space as a woman with hemophilia.
This brings me back to my original statement: Sometimes I feel like an imposter. Sometimes I wonder if my pain is that bad. Sometimes I allow the oppressive treatment of women seeking care to get to me. Sometimes I forget all I have learned. And maybe sometimes I long to be an imposter, because life would be easier if it was all in my head and I really didn’t have hemophilia.
We women need to own and embrace our space in the community. Women can and do have hemophilia, and we deserve the appropriate care.
It is OK to seek treatment. The moments we aren’t in pain or bleeding don’t mean that we are imposters; they mean that our treatment is working.
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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