I Feared My Diagnosis and Loss of the Known

Getting diagnosed with hemophilia is a whirlwind. It doesn’t matter if someone is diagnosed at birth or in their 40s: Their world is turned upside down.

It is terrifying. Life is changed forever.

I feel Father Anthony DeMello put it best in his book “Awareness“: “It’s not that we fear the unknown. You cannot fear something that you do not know. Nobody is afraid of the unknown. What you really fear is the loss of the known. That’s what you fear.”

Fear and loss

Life was tough as a child with undiagnosed hemophilia, but it became even more complicated when I realized in my 40s that I did, in fact, have the disease. For years, I listened to doctors when they told me that women do not get hemophilia. When I was finally tested, my factor levels were significantly below normal, suggesting I had hemophilia. 

As a child, I struggled with pain and the limits it imposed on physical activity. But I was also blissfully ignorant. I trusted the doctors who claimed women could not get hemophilia. I believed them when they said women’s “good X chromosomes” compensate for their “bad X chromosome.” When I bled, I was told it was not connected to hemophilia.

Their claims were dangerous, but they gave me a false sense of security.

Moment of diagnosis

Receiving a diagnosis of hemophilia as an adult was both liberating and terrifying. I was glad to know I hadn’t imagined years of pain and symptoms that were minimized or ignored. But I suddenly came face to face with the fragile reality of life with hemophilia.

I connected the dots. My bleeds went untreated for years. I was in a terrible car accident and wasn’t given factor when I suffered a head injury. What if I had died? Looking back, there were many moments in my life when I did not have access to the factor I needed to treat bleeds. Healing was slow. Sometimes it took months.

Everything was the same. I’d lived with hemophilia all my life. But, at the same time, it was so different. I knew how to live with pain and wounds that never seemed to heal. I did not know how to live as a woman with hemophilia.

My paradigm shifted. The stitches I needed multiple times as a child were a result of hemophilia, as were the nosebleeds. The pain I felt while running in elementary school was not laziness. The swelling in my ankle was a result of untreated bleeds. People told me to run out the pain. I just had to build up my muscles. But physical exertion only made it worse. I thought it was my fault, but the truth is that none of it was my fault. Hemophilia was treatable!

What would happen if I was in an accident, I wondered? I could bleed to death. The thought was scary! Of course, I could have bled to death my entire life, but the difference was that now I knew I could. I didn’t know what the future held.

Fear of loss of the known is real. My comfort levels changed completely.

Treatment plans

A proper diagnosis gave me the opportunity to partner with health care professionals to create an appropriate treatment plan. It took quite a while to find a team that understood how to treat hemophilia in women, but eventually I did.

Thanks to factor, I healed from injuries in days instead of weeks. What a relief!

I no longer fear my new known

As scary as the journey has been, I’m so thankful to have the correct diagnosis. Access to appropriate hemophilia treatment has changed my life.

Hemophilia is a disease I understand. There is no more fear. I embrace my reality, my known.

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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 Services, and are intended to spark discussion about issues pertaining to hemophilia.