Warning: depressing article ahead.
As I sit here in my computer chair, there are constant stabbing pains all the way from the base of my spine up until between my shoulder blades. I have a lingering stiffness in my right leg from a little unplanned hike earlier in the week and my knees are starting to ache because it’s late in the day. Even though it’s only around 8:00pm on a Sunday I’m exhausted, despite sleeping in until noon.
This is a good day for me.
My as yet undiagnosed chronic pain has taken so many things away from me, mainly the sports I used to enjoy and are still listed on my ‘About’ page because they’re too painful to take down. I have no social life and just surviving a full day of work takes enormous effort. And you know what? Compared to some people with chronic pain, I have it easy.
Yes, I’m trying to go somewhere with this rather than having a pity party. My point is that chronic pain is hard because it’s, well, chronic. As in you’re in pain for every single waking moment. That’s what makes it so hard for normal people to even begin to understand, let alone feel comfortable talking about.
So how does this relate to books? Well, in YA you see all kinds of different people being represented and that’s awesome. It’s nice to see LGBT people and people of various races finally being represented in fiction, even though we still have a long way to go in regards to fair representation. I think it’s amazing that YA authors are able to talk about things like terminal illnesses such as cancer or self-harm and suicide. But as someone with a very limited support group trying to deal with chronic pain, it would be nice to be represented in even just one book. Yet I also have a practical streak, so here are the reasons why no author wants to tackle chronic pain:
1. It would be a tough balancing act.
I won’t say that I actively think about my pain 24/7, but when you’re in pain said pain is always going to be in the back of your mind. You can’t ignore it and you even start to get annoyed at yourself for letting it consume your life. Enter fiction, which can be highly idealized representations of real people. Real people can whine constantly, but most of us don’t tolerate such characters in fiction. I admit, they’re annoying and you start to feel like telling them to just suck it up.
But someone with chronic pain can’t just suck it up. Sucking it up leads to doing what you would normally do, which in turn makes it worse for you the next day as your muscles and/or bones protest. I can definitely see where it would be difficult, if not impossible, for writers to create a character that thinks about pain constantly but doesn’t annoy the reader. Frankly, it would pretty much be impossible to realistically portray chronic pain without annoying the reader.
2. It’s ridiculously hard to understand chronic pain.
I used to think that people with chronic pain were weak. Suck it up, it can’t be that bad! You’re young, you can’t be in pain. You’re just exaggerating.
Thinking back on that, I cringe. I never said it to anyone, but like a lot of people out there, that was my perception of chronic pain patients. It was horrible, unjust and plain cruel at times but it’s a perception a lot of people out there share. I’ve heard all of those phrases and worse.
Even people you would think would understand chronic pain or at least be sympathetic (i.e. family) have a hard time dealing with someone with chronic pain. They get uncomfortable when the topic is brought up, get exhausted caring for you and get frustrated or just plain try to one up you (i.e. “You think that’s bad, well I’ve had a bad knee for five years!”). Most people that don’t know someone in chronic pain are just as bad or worse because there are so many misconceptions floating about out there.
Even if you are a naturally empathetic person, you can’t even begin to imagine what chronic pain is like. I know it’s hard to hear, but it’s true. That’s why in some ways I can’t blame writers for not wanting to tackle chronic pain, especially in YA. It’s hard to write about something you don’t fully understand. The constant pain, the stress, the lack of a social life, the exhaustion from lack of sleep, etc. It takes a huge toll on you and that’s not even throwing in all of the medical appointments and waiting periods people like myself have to endure.
3. There’s really no market for it.
If we’re talking strictly YA, there is no market for any book with a main character with chronic pain. The most generous statistic I’ve been able to find is that at any one time, approximately 10% of Canadians under 44 experience chronic pain. The usual estimate for people 18 and under is 5-8%. That is a really, really tiny market and as such publishers wouldn’t pick up a book with a main character with chronic pain.
For business-minded self-published authors, it also wouldn’t pay to write a main character with chronic pain. For one, how many of that 10% is in the YA target age group? How many of them read books on a regular basis? And, finally, how many of that small, small percentage would find their book? Business-wise, writing a book featuring a main character with chronic pain is not viable. Would it mean a lot to people in chronic pain? If it was done right, it would meant the world to us. Simple acknowledgement and a narrator one can empathize with is a dream I fear will never come true.
I know this wasn’t the most uplifting article I’ve ever done and it certainly isn’t one of my (in)famous rants, but it’s a topic I’m passionate about. As someone with chronic pain, it would be nice to see even just one book featuring a main character who deals with the same things I do every day. Diseases like cancer have finally been given representation in fiction and to great effect, but there are diseases that impact entire communities other than cancer. Chronic pain is sort of the elephant in the room that everyone knows is there, but no one wants to talk about. There isn’t much hope for a discussion happening anytime soon, but once, just once I’d like to see someone discuss that elephant.
[As a side note, most of my points also apply to chronic, non-terminal diseases but since I’m personally dealing with chronic pain, that’s what I chose to focus on.]