Normalcy vs. Needs

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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.



About Author

Tracey Neithercott

Tracey Neithercott is a journalist who writes mostly about health but sometimes about famous people. She also writes YA sci-fi novels and reads when she should be socializing. Or so her mother says. As a teen, she spent a full year aspiring to be a CIA agent, mainly to dress up like Sydney Bristow on Alias.

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3 Comments

  1. Dahlia Adler on

    Thanks so much for this interview, Tracey – definitely gives me a lot to keep in mind as both a person and a writer!

  2. I so totally relate to this. Especially the point about wanting to fit in while still wanting people to recognize your differences. I’d hate it if my friends chose to hang out at someone’s house that had stairs, but I’d also hate asking them to move it. So, yeah, not always easy answers.

  3. It looks like I have EM, but my entire body is affected. Back in highschool (2004) was my first flare up I believe. I always wore long sleeve shirts just to hide it, but thankfully I live in Washington state where it isn’t too hot, except for some days in the summer where it hits 90+..which is brutal.

    Anyways I didn’t bother going to the doctor until 2009 and thats when doctors thought I had some sort of NET. I’ve been to 3 different states not including my own and visited Mayo, MDA, and the NIH’s undiagnosed disease program. I visited the NIH in 2015 and even they didn’t mention anything about EM, they didn’t think it fit. My neurologist at UW made the suggestion and now we’re waiting for genetic tests. Getting a diagnosis for this has been a long and hard journey and all I’ve wanted is answers.

    My skin turns red and comes with heat or increase blood flood (emotions/exercise). I have a high pain threshold but its comparable to a sunburn that comes and goes. The only thing that helps me is cold, but considering my entire body can be affected, I’d have to take a shower to get any relief. Its as if the water temperature goes up as soon as it hits my body. But I only take a cold shower on really bad flare ups. If I did it every occurrence I’d take a few showers a day.

    Not knowing is the hardest part for me. After all this time I still dont have an official diagnosis. Although I believe I do have EM and so does my doctor, so hopefully soon I will finally have my answers.

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