Normalcy vs. Needs

Here’s the thing no one tells you about people with a medical condition: The disease is always on their mind, but they don’t always want to think about it. Today just happens to be a day I’m thinking about my condition.

(I pinky swear to relate this to writing.)

So, full disclosure, I didn’t have a disability in high school. But three years ago I was diagnosed with erythromelalgia. I know what you’re thinking: You totally just made up that word. I am not so clever.

Erythromelalgia—shortened to EM to save everyone’s sanity—is a condition in which, in response to warmth (for me, temps over 65 degrees) and movement (say, walking around the house), the blood vessels in my feet go crazy. During a flare, my feet become bright red and get so hot they often give themselves second-degree burns.

As you can imagine, hanging out is a little bit difficult when your feet are lost somewhere in the fiery depths of hell. (Shocker: Burning alive isn’t such a pleasant feeling.) I’m able to work from my very cold home, which I am more grateful for than Chris Hemsworth, who, to be honest, I am extremely grateful for.

The hard part, of course, is that EM is a rare condition. Doctors don’t know much about it, which means there are ways to slightly lessen the pain, but there are no treatments and there is no cure. A lot of people with EM, myself included, spend an inordinate amount of time researching and testing new ideas with the hope that something will improve symptoms.

And you know what? That gets tiring. Though the temperature of my feet is always on my mind, I don’t really want to think about EM nonstop. And, subconsciously, I want others to act this way. (Translation: I want to have my cake and eat it, too.) I want people to understand why sometimes I need to stand barefoot in the snow and at the same time I want to be treated as if I don’t have a medical condition.

Is that fair? No.

I think, when writing a character with a serious medical condition, we have to focus on those contrary wants and needs. We should give our character a desire for acceptance—something most people with a disability want, yes, but also something that all teens crave. So our character would want to be like the rest of the guys in high school, not the freak with bright red hands and feet.*

And yet he would also get a little annoyed when his peers treated him so normally that they forgot the accommodations he required. Maybe they all plan to go the beach, forgetting hot temperatures make his feet burn.

All characters with serious medical conditions should experience this struggle between their desire for normalcy and their special needs. And, in the end, it’s the realization that there is no easy answer (unless, of course, your side characters are lucky enough to mind read and therefore completely understand what your main character is thinking) that may show character growth.

But, I should point out, accepting life with a disease and accepting the disease are different things. It’s okay if a character hates the disease, even to the very last page. That’s not a lack of character growth. That’s reality.

And for someone with a medical condition, reading a story about a character with an unidealized view of his disease is a breath of fresh air.**

Or, in my case, a breath of very, very cold fresh air.

* A teen with EM who I spoke to once mentioned how the hardest part of school was getting the guts to talk to people when he felt so embarrassed about his bright red hands. When crafting a story, consider this: teen insecurities + medical condition = major anxiety.

** Consider Hazel Grace and Augustus Waters in The Fault in Our Stars.