My medical records show frequent headaches and joint pain from the time I was able to articulate being in pain. When I was seventeen, a neck injury left me with a constant headache and more than fifteen days of migraine each month. It wasn’t until about six months ago — around the time I turned forty — that I was finally diagnosed with ­hypermobile Ehlers-Danlos syndrome (hEDS), a complex genetic connective ­tissue disorder characterized by overly lax ligaments. This causes joint pain, because unstable joints are more prone to injury, as well as muscle pain and fatigue as muscles work overtime to stabilize them. hEDS tends to ­present with an alphabet’s worth of other poorly understood and hard-to-treat conditions, so, like me, many hEDS patients deal with multiple chronic illnesses affecting different systems of the human body.

The result is that I’ve been in constant and increasingly widespread pain my entire adult life. But you’d probably never know unless you clocked the ever-growing assortment of compression wear and braces I use to support my loosey-goosey joints. Most days I’m able to work a full day, maybe do some household chores or exercise briefly. Other days I can barely get out of bed. It’s not uncommon for the latter to follow the former, and I often pay for a stretch of good or especially busy days with just as many spent recovering.

I don’t remember reading about teens with chronic pain when I was a teen with chronic pain, except in those Lurlene McDaniel books where everyone dies of some horrible disease before they’re eighteen. But the intersection of my medical history and my preference for speculative fiction media has made me hyperaware of an annoying trope I call the “magical headache.” I encountered many a magical headache in print during my years reviewing tons of speculative YA books for The Horn Book Guide, and the trope frequently appears in fantasy, horror, and sci-fi novels, TV shows, and films for teens and adults.

For those less sensitive to this trope, the first “magical headaches” that may come to mind are those suffered by a certain boy wizard with a telepathic connection to the series’ villain. The example of the boy wizard’s pain nicely illustrates my concept of magical headaches: they suddenly strike a character to warn of impending trouble, mark the onset of supernatural ability, or indicate possession by an evil entity. (For a long list of headaches as a harbinger in media, see the TVTropes.org entry for “Headache of Doom.”) The headaches are painful in the moment, but they typically don’t consume much of the character’s time or thoughts.

More nuanced portrayals of chronic pain in speculative YA novels do ring true to me. In Leigh Bardugo’s duology Six of Crows and Crooked Kingdom, the injury that disables ruthless young gang boss Kaz Brekker isn’t fantastical (“He’d broken his leg dropping down from the rooftop [during a bank robbery]. The bone didn’t set right, and he’d limped ever after”), though the world he inhabits is. Though physical pain is a recurring theme in chapters told from Kaz’s perspective in both books, he is careful never to reveal its true extent to anyone but his trusted colleague, Inej. In fact — calculating bastard that he is — Kaz deftly turns even his disability to his advantage, allowing unchecked rumors to bolster his already intimidating reputation: “It became a declaration. There was no part of him that was not broken, that had not healed wrong, and there was no part of him that was not stronger for having been broken. The cane became a part of the myth he built.” Kaz deals with pain daily, but he deals with it on his own terms.

Emily Lloyd-Jones’s Welsh legend–inspired high fantasy The Bone Houses follows mapmaker Ellis and gravedigger Ryn as they venture into the mountain territory of the otherfolk and various magical creatures. Ellis seeks information about his past, while Ryn hopes to stop the risen dead from overrunning her village. Throughout their quest, Ellis copes with chronic pain from a childhood injury, ranging from distracting to completely disruptive. The answers Ellis and Ryn seek are more entwined than they expect: like Kaz, Ellis was injured through mundane means, but as it turns out, his healing was magical. More than halfway through the novel, a flare finally forces Ellis to admit to the pain he has been hiding. When Ryn asks why Ellis hadn’t already told her about his pain, he says, “To tell people is to invite pity…or worse, advice…Herbs to try…Stretches. Leeches, one time. People cannot simply let me be. They have to find a way to fix me.” Ryn replies simply, “You’re not broken.” Later, she says, “Pain doesn’t make a person weak or strong…Pain just — is. It’s not a purifier, it’s a part of living.”

It’s especially tricky to get the portrayal of chronic pain right when it’s more closely connected to a novel’s fantastical elements, but Lloyd-Jones does it admirably in companion book The Drowned Woods. Protagonist Mer is the last living water diviner, and she’s agreed to use her power to locate a legendary well containing several magical treasures. Her ability to manipulate water comes with a tangible cost: it draws on the water inside her own body, leaving her dehydrated and weak, wracked with migraine-like headaches. Mer can control her magic, and thus the extent to which she is affected by it, but as the novel goes on, she must draw on her power more deeply and for longer periods of time. Mer must weigh the need to use her ability, whether to find water sources or to protect herself and others, with the pain it causes and the subsequent recovery time. Like many who live with chronic pain, she chooses to push her limits at times, despite knowing there will be a cost.

In Kristen O’Neal’s ­Lycanthropy and Other Chronic Illnesses, a group of lonely young people with various chronic conditions find validation and companionship via a Discord server they dub “oof ouch my bones.” (The novel is hilarious in addition to having great chronic pain/illness rep.) Protagonist Priya’s Lyme disease is so debilitating she’s had to take a leave from her premed program, but several of the others are afraid they don’t belong in the group — most of all Brigid, who’s cagey about her condition but clearly in bad shape. Priya becomes concerned enough about Brigid’s well-being that she drives (painfully) to Brigid’s home an hour or so away, and the truth comes out: Brigid is a werewolf.

Lycanthropy may not be a real disease — as far as we know — but it affects Brigid deeply and on a near-daily basis, much in the way Priya’s Lyme diagnosis has altered her life. The girls’ conditions are vastly different, but they both feel isolated, “left behind” by peers, and betrayed by their bodies due to their diseases. The rare understanding and the frequent dark humor they share are familiar to me, and precious in my own life.

The portrayals of chronic pain that resonate with me do so not only because of the way they describe literal pain but because they also authentically capture many of the non-physical, but similarly unseen and painful, aspects of living with it long-term. Like Priya, I’ve had to postpone or give up long-held dreams due to my illness; like Ellis, I’ve grown wary of inviting pity and well-meaning but under-informed advice. (Yes, I have tried yoga.)

By contrast, what frustrates me about magical headaches is how disconnected pain is from the rest of characters’ lives, how inconsequential it is. It comes and goes, and when it’s gone, it’s as though it never happened. The characters don’t seem, for example, to feel isolated by pain, or to worry about being “too sick” to be healthy but “not sick enough” to identify as disabled. They don’t dread the next headache; ration their good days and push through bad ones; or continually try a new specialist, medication, PT regimen, supplement, elimination diet, or gadget in a desperate search for relief. Their headaches are invariably short-lived, explainable, and convenient to the plot, if not to the protagonist.

I don’t think it’s wise or kind to speculate as to whether an author lives with chronic pain based on how they write about it. Chronic pain is marginalizing as well as physically and emotionally difficult; it’s unfair to “out” authors who are unwilling to disclose their experience. Nor do I necessarily believe that lived experience itself is enough to write chronic pain well. If I were going to write a fictional character with my real-life disease, I would want to do lots of research about hEDS and have my work vetted by fellow patients and medical professionals.

In the books where chronic pain feels real to me, the characters who live with it are more than their pain, and their pain is more than a plot device. It may well move the plot forward, but it’s also an integral part of how these characters see themselves, how they are perceived by others, how they experience and move through their society. When done well, portrayal of chronic pain can tell us about the character who lives with it as well as the world around them. Like any other lived experience, chronic pain should be integrated into fiction thoughtfully and with nuance. As Lloyd-Jones’s Ryn says, pain is not a strength or a weakness. Nor is it, as the magical headache trope would have it, a superpower or a bad omen. It just is.

Pain is not a plot device in my life, moving me toward some thrilling conclusion. But it is an undeniably significant part of my life — one that I, and others who live with pain, would like to see represented authentically and more frequently.

From the May/June 2023 special issue of The Horn Book Magazine: Diverse Books: Past, Present, and Future.