[This post was previously posted on my Patreon blog.]
There was uproar in the writing community this week about an interview by an NYT bestselling author about her latest book, in which chronic pain is described as a magical gift. I made a lot of tweets about that, as did a bunch of other really smart people, and noted how frustrated I was with the topic itself because this isn’t 101 entry-level stuff and a lot of people were going to be confused and frightened off the topic of writing characters with chronic pain. And, sure enough, tentative questions came in from very nice people, all asking the same thing:
Should I not write a chronic pain character?
I want to emphasize from the start of this that I am not The Speaker for the Spoonies. So when I say ohmigosh-please-write-all-the-chronic-pain-characters-I-need-them, understand that someone else may feel differently from me on this. I also want to note that there are a lot of different ways to approach chronic pain, and some people are going to hate whichever approach you take. The answer here (in my mind) is not to not-try-at-all, but rather to do your best and warn your readers what they’re signing up for when they read. But let’s go over some guidelines.
Why is your character in chronic pain?
Too many writers have been trained to use a “default” character model—white, heterosexual, cisgender, and able-bodied—and think that any deviation from that model requires some kind of story explanation. So we get plots where the main character doesn’t just have chronic pain, oh no, it’s been “gifted” to her by magic or god or vampires or an ancient curse levied on her family by a coven of riled tax accountants.
I’m not saying never do this, because I can imagine an author with chronic pain—i.e., an “own voices” author speaking to their own experience and being clear about that upfront—finding some cathartic escapism from that. I, too, get sad feelings sometimes about losing the genetic lottery in terms of spinal configurations and I can see how “no, how about I have this because I am awesome” could be fun to write.
But! There’s a big difference—and it’s a difference that will come through on the page—between a CP author writing unapologetic author insert awesomeness to explain their chronic pain vs. an able-bodied author grappling for an story-explanation of why their “normal” character mold was “tainted” with chronic pain. That’s gross and stigmatizing, like we’re “less than” the able-bodied characters.
Consider instead: your magic-wielding protagonist could just... have chronic pain? without a plot reason? just because some people do? We’re not such a rare segment of the population that our inclusion warrants an explanation, and such explanations can shy really close to unwanted “justifications” of why there’s a CP character in your epic fantasy. Believe me: we don’t require a justification to be here. Just let us be here. We should have been here all along, but authors have been pretending we don’t exist.
While we’re on the subject, avoid “explanations” of pain that are front-loaded with guilt or shame or stigma. Pain shouldn’t be leveled on your character as a punishment or because they have mental illness or an abusive family or a guilt complex such that they “wished” pain onto themselves or caused their disability in some way. This contributes to a body of work which says that chronic pain is something guilty and shameful that we’ve brought on ourselves or had inflicted on us as victims. Again, consider us just having chronic pain because lots of people have that.
Is your character cure-seeking?
This is complicated and you’re not going to please everyone here. Know that from the start, be sensitive, and label your book appropriately so readers can decide whether or not they want to read your work.
Here is the thing: A lot of chronic pain people are cure-seeking in real life. Both of my spinal fusions were an attempt to fix my back, and a lot of effort and planning went into making those work. Seeking a cure can be a big part of a spoonie’s life. Plus, if you’re writing magic-users or advanced-technology, some people are going to be interested in an escapist tale where the pain was fixed. Some #ownvoices authors are going to want to write an escapist tale wherein pain was fixed.
Other people are not going to want to read that at all. They can come away from a cure-seeking narrative feeling discouraged because magical cures don’t exist in real life. They can come away feeling gut-punched if the narrative acted like life without a cure isn’t worth living (don’t do that in your story, please). They can come away frustrated that yet another chronic pain character couldn’t just be without their pain becoming part of the plot. These are valid feelings, which is why I say to label your work with care.
But here are things you can do:
(1) Give your character more plot than just cure-seeking. Remember I said I spent two spinal fusions trying to fix my back? I was also doing other stuff at the time! I was going to school, writing books, watching movies, falling in love, and making friends. The surgeries were important parts of my life, but they weren’t my entire life. I had millions of other driving motivations than just my pain.
(2) Don’t glamorize cures as the only thing that makes life living. How fucked up is that? Please don’t do that! Major life events shouldn’t hinge on the cure—people with chronic pain can still find love, beat the big bad, kick ass, and be awesome without needing a cure to accomplish that. If there is going to be a cure offered in the story, my feelings are that it should be like ordering a cherry on a sundae: a nice sweet little addition, but the sundae would be fine without it.
(3) Consider adding characters who choose not to be cured, for whatever reason. There are a lot of reasons not to pursue cures for chronic pain. Sometimes cures can carry risks of their own (for example, I nearly died in my first spinal fusion surgery) and sometimes cures can offer only temporary relief and then worsen over time (see also: my second spinal fusion, which I regret now). Some people with chronic pain are perfectly happy with their current pain management process and don’t want to mess with a good thing. Some people just don’t want to! (See: My mother, who has scoliosis but hates doctors and the thought of surgery.) That’s okay! The point here is that your chronic pain character shouldn’t read as a stand-in for all chronic pain people.
Does your character medicate through the help of a friend / lover?
This one is complicated and can bring up a lot of power dynamics that you need to be aware of.
For one: a character really should not fall in love with their pain management person. This is not unlike falling in love with your doctor or therapist; yes, it is a thing humans do (see: transference), but it’s very fraught for a reason and it would be super unethical for the doctor/therapist to reciprocate those feelings. A good character can't become romantically involved with a patient and remain morally good, in my strong opinion.
Now, I’m not saying characters shouldn’t be able to help each other, just that you need to tread carefully. In my book Survival Rout, Aniyah and Miyuki are already romantically inclined before Miyuki thinks to use xer magic powers to help Aniyah with her chronic pain. For me, this was akin to my own spouse using his talents to help me through my pain flareups, but that effort came after we were already romantically involved, not before. There was no risk that I felt drawn into a relationship with him because of what he was doing / could do to manage my chronic pain.
For two: Be aware that a loved one who helps with chronic pain could represent a situation the CP character might be unable to safely leave. That’s a power imbalance, not unlike an impoverished character marrying a fabulously wealthy bachelor with an unfair / lopsided pre-nuptial agreement. Are some people willing to read books like that? Sure. Are some readers going to be very uncomfortable if the text doesn’t acknowledge the built-in power imbalance? Yes.
As a very general rule, unless you’re an #ownvoices author I would strongly advise against making the love interest someone with a talent that can help the CP character manage their pain. That doesn’t mean the love interest can’t help in normal, mundane ways but they should ideally be ways that other people could do just as well or better so that the CP character doesn’t feel “trapped” in a relationship with them.
How does your character feel about their pain?
Please imagine you’re in pain right now. Not fun, right? Now imagine you’re in pain all the time. How does that feel? Okay, at first you might feel kind of hopeless. That’s a thing, yes. But “hopeless” isn’t our only setting. We have sorrow, we have anger, we have frustration, we have gallows-humor. We have “I can’t mentally deal with this right now, so I’m not going to think about it”. We have emotions about other stuff! Sometimes we don’t think about our pain at all because while it’s always there, it can become a background thing we don’t constantly dwell on. It’s still there, but we deal.
Here’s some things to stay away from: Guilt. Shame. Extra super-compassion or understanding or empathy because our chronic pain made us ~magically~ more sympathetic to god’s suffering creatures. Suicidal or self-harming unless you’re an #ownvoices author and you know exactly what you’re doing and how carefully to tread. Basically anything that makes us Saints, Sinners, or the Walking Dead because of our pain. We’re just normal people who happen to be in pain all the time! We react to that like normal people do. We’re not Gods or Demons or Undead.
Be sensitive, get sensitivity readers, and be chill about criticism.
No matter what you do, someone is going to be upset. Embrace that and let it be freeing instead of stifling. When someone is upset with you, thank them for sharing their perspective, take the criticism on board, and move forward doing better. Support authors with chronic pain and elevate their voices. The fact that you care, and that you’re reading this with intent to try and not screw up, is itself a wonderful sign. You’re moving with careful steps instead of barging in pretending you know everything.
Thank you! ♡ ♥ ♡