Stumbling Across Disorders and Diseases

I don’t usually adhere to that old, tired adage “write what you know.” Why would I want to write about what I know? I write to move out of my regular life and explore other worlds and other people’s lives with different problems than my own. Whenever I’ve written about something close to home, it doesn’t go well, so I just don’t do it.

I’m an escapist at heart.

So it’s interesting to me (and fortuitous) when I come across people who possess traits/disorders of characters in my current work-in-progress.

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That’s what happened with Whickering Place. When I started writing the novel in 2017, I was finishing up Wildfell. I thought Whickering Place would be the first novel in the Legacy of Darkness series, although it later became the second. At that time, I didn’t know anyone who, like my main character, had agoraphobia, so I started researching it and learned a lot about causes, triggers, varying levels of severity, and treatments. But it wasn’t until I gave the manuscript to early readers that I learned at least one of them suffered from agoraphobia. This was so exciting to me (not that I was excited they battled this, mind you), as I was able to ask questions, discover whether I was right or wrong about some aspects, and learn more about it in general.

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For those who don’t know and haven’t read the book yet, agoraphobia is an anxiety disorder in which people often do not feel comfortable leaving their homes for public places. They may suffer feelings of panic or extreme anxiety in crowds, leaving the house on their own, or having to travel in open (or enclosed) areas. Agoraphobia may be attached to a traumatic experience or PTSD. There are varying degrees of agoraphobia and while it may be temporary for some, others may struggle indefinitely.

My main character also has a genetic bleeding disorder, von Willebrand disease. Von Willebrand is cause by a genetic mutation that prevents normal use of the protein that allows clotting. Like hemophilia, a person with von Willebrand may have heavy and prolonged bleeding. Again, there are levels of experience from mild to extreme. I was at a funeral last year when I met a woman who told me that she had the disorder, although she hadn’t known been diagnosed until later in life. Von Willebrand is not curable but can be treated (usually with something like the nasal spray desmopressin).

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Finally, because my main character has von Willebrand disease, she is terrified of having her blood drawn. A couple of months ago, a woman I work with told me that her daughter is positively phobic about having her blood drawn (since then, I’ve discovered there are many who are). Her daughter will suffer through prolonged illnesses because she is so terrified to lose blood. She believes her blood should remain in her body, not out. Recently, the young woman had a terrible case of mono, but because she wouldn’t have her blood drawn, she didn’t get the illness treated until it was at a severe stage.

I always consider these accidental run-ins Divine occurrences. I’m much more prone to research than seek out actual people, so when I come across them by chance, I’m so grateful. It also gives me a chance to learn about these disorders, diseases, or life experiences and allows me to write more empathetically about my characters.

As Terry Pratchett says, “The first draft is just you telling yourself the story.” But on the second and third draft and beyond, it’s nice to have a few experts helping you add flesh (and blood) to the characters.

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