Hektoen International

A Journal of Medical Humanities

Notes from writing a character with a bleeding disorder

Nicole Hebdon
Buffalo, New York, United States


A typewriter showing the text "stories matter"

There is nothing to writing. All you do is sit down at a typewriter and bleed.” –Ernest Hemingway. Photograph by Suzy Hazelwood. Taken from pexels.com

I have read two books that feature characters with bleeding disorders. The first was a used paperback with a neon green and blue cover, like bowling alley carpet under a black light. I do not remember the title or the author’s name or much of the plot, but I remember the character they called “bleeder.” He was a hemophiliac. He was also a side character, so most of his development and backstory was wrapped up in that word. Bleeder. The word seemed urgent, like something you hear in a movie about emergency room doctors. The word implies that bleeder is what he was and what he always would be: a walking, talking nosebleed.

The second book was about the Romanovs. Of course. You cannot talk about bleeding disorders without someone bringing up the Romanovs. In this portrayal, hemophilia was a pale, weak boy piled in blankets, longingly watching his siblings play outside. The disease was severe and isolating.

My bleeding disorder mostly takes the form of mysterious bruises, which stick around for weeks at a time, the insides disappearing first, leaving a hollowed out circle on my arm that people often mistake for dog bites. And while the disease was an annoyance during my childhood, it never stopped me from playing outside.

As far as films go, I can not remember a single one that featured a character with a bleeding disorder. I longed for this representation without realizing it. Sometimes I would pretend characters in horror movies had bleeding disorders. Horror was the only genre this worked in because it is the only genre that frequently featured bleeding characters, however unrealistic the amount and color of the blood was.

It did not occur to me to seek out books featuring more diverse portrayals of hemophiliac characters until almost a decade later when I was pursuing a degree in creative writing. The search did not go far. Bookstores rarely had anything in-store on the topic, and what they did have was nonfiction, most of which revolved around, you guessed it, the Romanovs. Online I was able to find a few picture books, but nothing for the middle grade, young adult, or adult markets.

I tried to write a character with a bleeding disorder for years before I started attending workshops and was never able to finish anything, but graduate school and my disappointing search renewed my hope in this endeavor. As Ernest Hemingway said, and as my professors liked to repeat, “There is nothing to writing. All you do is sit down at a typewriter and bleed.” Bleeding was easy for me, so I assumed writing about it would be as well.

I was wrong. I did not write a single character with a bleeding disorder the entire time I was in graduate school. I wrote about my own bleeding, sure, but that writing was nonfiction, and did not fill the hole I had found. I wrote about blood a lot. My stories are full of butcher shops, and murder, and even women with unexplained bruises, but I never reveal them as people with bleeding orders.

I did not know what a character with a bleeding disorder should look like on paper, but I knew exactly what I did not want them to look like. I did not want them to be 1. male, 2. inbred, 3. Russian nobility, or 4. constantly bleeding. In other words, I did not want them to be stereotypes or built on misconceptions.

I have had many people say to me, “I didn’t think women could have bleeding disorders.” While hemophilia is rare in women, some women do have it, and there are also many other bleeding orders that are not hemophilia and affect men and women alike. After people get that out of the system they ask, jokingly I hope, “Does that mean you’re related to royalty?” Followed by, “Does that mean there was inbreeding in your family?” After I answer these questions (with a no) the askers usually feel a little silly. Yes, these questions seem ridiculous, but I cannot fault people for asking them when the only portrayal of people with bleeding disorders in the media are European princes and princesses.

Another question I get frequently is, “If you get a paper cut, will you die?” Again no. There are many different bleeding disorders, some more severe than others, but no one is going to die from a paper cut unless said paper was laced in poison.

Every time I tried to write a character with a bleeding disorder I had it in my head that the reader was sitting there thinking these questions, and I, the author, was not there to correct their misconceptions. This scared me. When I look back at my attempts at these stories, they are clunky and bogged down with explanations of the disease that often take away from the main conflict and plot.

The first hurdle comes when introducing the character’s bleeding disorder. I have heard people call hemophilia and other bleeding disorders invisible illnesses, but they are not always invisible. Sometimes it is very visible. Sometimes it is a stained skirt, or a dribbling nose, or an arm so bruised it looks like leopard print. Then again, sometimes it is pain in the joints, spitting pink when you brush your teeth, or someone choosing not to drink because alcohol is a blood thinner. How do you introduce a character with a bleeding disorder without having them marching into the scene with the declaration? (In writing this is called telling, which is frowned upon. “Show, don’t tell,” was another common refrain in graduate school.) The answer seems obvious: show the character bleeding. But I did not want my character to be always, or ever, bleeding. So much of my bleeding disorder treatment is avoiding bleeding. I have become so careful that it has been years since I have had a serious cut, or even a nosebleed.

And besides, if a character is bleeding in fiction, then the conflict of that scene becomes the bleeding. It seems that to write a character with a bleeding disorder, the story needs to be about bleeding disorders, and what the character has to endure or overcome.

This is not what I wanted. I wanted to write a character who had a bleeding disorder, but also had relationship or work conflicts unrelated to the condition. I wanted to write a character with a bleeding disorder who was hurt, not by paper cuts or nosebleed-inducing humidity, but by things other characters said and did to them. I wanted to write a character with hemophilia who hurt other people, and not with their spontaneous and concerning health problem, but with their words and actions.

This is to say, I still have not written a successful story featuring a character with a bleeding disorder, but I have gotten closer. Learning to write characters with bleeding disorders is learning to write about illness. It can be overwhelming because it feels like you have a duty: you have to tell a story, but you also have to represent the disorder accurately, and not just your symptoms, but the symptoms that other people have as well.

This feeling is wrong. I do not have to represent every member of the bleeding disorder community. Just as my bleeding disorder does not define me and does not dictate the activities of my day, it does not have to be the focal point of my character’s story.

So why aren’t there more characters with bleeding disorders in fiction? Is it because like me other authors get hung up trying to balance story with representation, or is it because people are happy with the portrayals we already have? I could not tell you, but I can confidently say that we could only benefit from more stories that include characters with bleeding disorders: characters who all have different disorders, different symptoms with different degrees of severity, characters who represent everyone in the bleeding disorder community, not only the romantically tragic prince bleeding into the Russian snow.



NICOLE HEBDON is a writer from Buffalo, New York. She is a graduate of the MFA program at Stony Brook. She has been published in The Kenyon Review, The New Haven Review, The Antigonish Review, The New Ohio Review, and The Southampton Review among other places. She has Von Willebrand disease, which means she is missing a clotting protein.


Submitted for the 2019–2020 Blood Writing Contest

Winter 2020  |  Sections  |  Blood

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