I’m not a hero for living with hemophilia

I hate it when the term “hero” is used to describe me and my daily life with hemophilia. Honestly, I despise it being used to describe anyone living with a rare disease or disability. I think it’s the wrong word, as its use can inadvertently minimize the emotional challenges and physical battles people with health conditions face.

Yet the term seems to be ubiquitous in describing people with medical challenges. Because of this, I know some will disagree with me. Hear me out.

I see the word used most often by parents of children facing unimaginable health circumstances. I understand the value of honoring a young person’s journey of strength and perseverance when coping with the grueling and sometimes harrowing realities of life with a rare disease. Helping a child feel like a superhero can be a wonderful psychological boost, enabling them to remain resolute and persist. I don’t want to minimize the value of acknowledging their fight. I do want to offer a different word choice to describe their reality.

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Why ‘hero’ doesn’t reflect my experience

The reason I don’t like being called a “hero” is that it infers I had a choice. It was not my choice to be born with hemophilia.

Here are two ways Merriam-Webster defines the term: “a person admired for achievements and noble qualities,” and “one who shows great courage.” To me, this involves choosing one’s path, and no one chooses to have a rare disease. Plus, I’m not sure we always show great courage. We move forward and face our disease because we have to.

I’d rather use terms that more accurately depict our reality. Living with a rare disease can be downright dreadful, nightmarish, and exhausting. It forces us to find and develop great internal strength. We must constantly adapt as we tackle new and ever-changing challenges, requiring an incredible amount of persistence.

As a woman with hemophilia, I fought for years to obtain a proper diagnosis and access to treatment. It was devastating when my medications stopped working as effectively as they once did and new plans had to be made to prevent bleeds.

I prefer terms such as “warrior” that better represent our perseverance in facing the atrocities of a rare disease. We are survivors, thrivers, and fighters. For some, every single day is a battle.

I interpret “hero” as someone who courageously steps in for a moment and then gets to take a break. Even during less grueling times, there’s no way to press pause on a rare disease. The condition always exists, and on some level, we must maintain a constant awareness of it.

A hero puts on a cape to dive in and save the day. A warrior puts on armor to shield them for battle. I am a warrior, a survivor; I thrive and persevere. I choose to don my armor (which may be knowledge, medication, advocacy, etc.) every day. When hemophilia rears its ugly head and a bleed threatens to damage my spirit and resolution to carry on, I must reach deep inside and reinvoke my determination to not let hemophilia win. I pick up a sword and find renewed tenacity to face the situation head-on.

I didn’t choose this life, but with great resolve, I decide over and over again to engage in any battle necessary to keep hemophilia from bringing me down. I’m a proud warrior, and I continue to earn this title as I face emerging battles. My armor of knowledge, community support, and medical intervention is critical to helping me successfully emerge from the next encounter on my hemophilia journey.

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.