On chronic illness rep in spec fic, from my own experience

When I was a teenager, someone informed me that I was unjustified in wanting chronic illness representation in science fiction. I was told that my desire to see my experiences reflected in my favorite genre was unrealistic because “science would have advanced enough where chronic illness wouldn’t exist anymore.”

Which, holy eugenics, Batman! But I digress.

Thanks to them, I’m writing this column, because I’m very stubborn and enjoy proving people wrong – but, more importantly, I feel responsible for standing up for the younger version of me who searched and yearned for chronic illness in speculative fiction and couldn’t find it.

You know the saying: “if you want something done right, you have to do it yourself”? I’m doing it myself.

My self-indulgent backstory

As this is my first column entry for LSQ, I figured I’d offer something by way of introduction. I’m Amanda, I’m reasonably old and also reasonably young (depending on who you ask), and I’m a chronic illness lifer. I was born like this and there’s no sign of my afflictions going anywhere; something I cope with through tongue-in-cheek humor, sarcasm, and some strong language.

The author, age 16. Clearly not much has changed.

(As a small aside, I know some writers lump chronic illness and disability into the same category. I see those two identities as resting within a Venn diagram – not everyone who is disabled may be chronically ill, and not everyone who is chronically ill is disabled. I’m not one to police how someone chooses to identify, but for the purposes of my column, I prefer to say I am chronically ill, but do not feel I’m disabled.)

When I was a kid, I loved reading. Clearly, that hasn’t left me, but when I was a kid, it was bonkers – I was reading 1-2 chapter books a day when I was in elementary and middle school, and only really slowed down in high school when I started working at Starbucks part-time.

But, while I did try my best to find them, I could never get my hands on fiction that represented my lived experience in a body that is constantly trying to take me out (and succeeds maybe 40% of the time). And when I expressed this desire to others, I was met with indifference, commentaries like the one I brought up at the start of this column, or the proffering of new bestselling books like John Green’s The Fault in Our Stars, which wasn’t what I wanted on multiple levels. (Yes, I was 16 in 2014. I’m a baby.)

Two college degrees, some scholarship, and a manuscript in the query trenches later, I’ve started trying to solve the problem I first identified as a young teen. There isn’t much by way of academic writing about chronic illness in speculative fiction, so I produced some while earning my MFA. I couldn’t find many characters whose chronic illness is present, but not a plot point, so I wrote the story myself.

The stories that matter

For a long time, I thought I was the only person who cared about wanting chronic illness representation in my media. I figured there must be valid reasons for why I rarely saw characters with afflictions like mine: maybe it was too hard to depict in writing? Maybe being sick was too ugly for the media to want to betray?

A notebook flips closed in the foreground as a cup of coffee sits in the sunlight in the background.
Yannick Pulver/Unsplash

This was only furthered by the proliferation of narratives that seemed to embrace characters who were ill or dying, so long as they made some kind of beautifully tragic tableau that readers could woobify in fanfiction. (And sure, I may be coming down a bit too hard on those narratives, but when it’s all I see, it gets a bit old!)

The only thing I will always refuse to believe is that all chronically ill characters and their stories are good for is trauma porn or “hero stories” about how courageous some young person is for living with a chronic illness (which is just condescending, let’s be real). Take it from me – chronic illnesses are just a facet of being a human, no different than anything else. My chronic conditions are things I carry around with me – and sure, they inform my personality and character – but I am whole and human nonetheless, and I want stories that treat me, and everyone like me, that way.

So here I am, spite-writing a column all about chronic illness and queer rep in spec fic and why it matters. Woohoo! I’m not going to sit here and say that I’m the best writer for the job – I’m just one human being trying her best to make the representation she wishes to see in the world – but I’m trying. And I’m glad you’re here and ready to listen to my thoughts on the matter. Because I do belong in speculative fiction. And in every other type of fiction. I intend to do my damndest to prove it.