I am writing this as I am stoned to high heaven – legally – during an in-hospital pain treatment. It seemed an apt mindset in which to write this post. Excuse any errors on the ketamine, dear readers.
It’s not hyperbole to say that we have very few characters in young adult fiction who are a ‘spoonie’. For those of you who don’t know, the term spoonie is an umbrella term for an ever increasing large group of people who live with chronic illness and/or disability or difficulty that is largely invisible to society. If you want to know more about the theory, mosey on over to this great post at But You Don’t Look Sick.
The most recent spoonie character I have read in recent memory is Hazel Lancaster in John Green’s best-selling sob fest The Fault In Our Stars. It’s an excellent book with a realistic portrayal of someone with a terminal disease. I don’t want to take away from the group of spoonies who can identify with that book; however, it does follow the trope of people with disabilities who die in fiction and generally live sad lives (with hints of happiness). Don’t even get me started on the trope of people with disabilities who want to die in fiction because their disabilities are too much to bear. (I’m looking at you, Me Before You.) I’m not even here to talk about the absurd characters whose disabilities get magically healed in fiction or just make them “quirky” or “inspiration porn”.
People like me are not represented in fiction – and the way I see it, it’s down to two reasons.
Reason #1 – We’re Unicorns
I am writing this, as I mentioned at the beginning of this post, while I am in hospital for a treatment for my pain. I am surrounded by women in their 50’s and then mostly elderly people. Young spoonies are living with conditions every day that often are more likely to afflict older people. So we’re a minority. Right now, I am a violet-haired unicorn in a sea of purple-rinsed elderly people. Medical professionals and random people I meet are always concerned and confused that someone as young as me (for reference: I’m in my early twenties) is so ill. And like, I know! I’m concerned too. I’ve got 60+ years of dealing with this stuff and the odds are not in my favour.
So if we’re rare majestic unicorns in real life, it makes sense that we are yet to become unicorns in books too. From what I see in the young spoonie community on tumblr, pinterest and goodreads, I am confident that writers like myself will slowly begin to create and publish our stories with characters like us in the future.
Reason #2 – We’re Saaaaaaaaaad
A couple of months ago a friend said to me, in all seriousness, “I don’t know how you haven’t killed yourself.” And more recently I have had two friends say to me sometimes they feel so sad and helpless for me because they can’t help me when I am ill or in pain.
I completely understand these sentiments. Living with daily illness and pain is depressing in the truest sense. Some days, it is hard to get out bed or feel hopeful for the future. It’s frustrating when nothing works or when there is no one to blame.
But it doesn’t mean that a story about living with chronic illness, or a story featuring a character who just happens to be a spoonie (option B would be the optimal one, potential authors out there!!) has to be a Nicholas Sparks movie.
I am very lucky in my life in that I am still functional. I work full time, I have friends, I have hobbies, I exercise, and I attempt to have some kind of love life. Being this functional is exhausting and there are definitely days where I flop on my bed or eat cereal for dinner because life is too much to handle.
Being chronically ill hasn’t dulled my sarcastic tongue, or made me lose my sense of humour. It hasn’t robbed me of friends – although it has made me realise who my true friends are. I, like many spoonies are out there, have tried my hardest to make sure my illness does not stop my life or give it a soundtrack consisting of Mad World on an eternal melancholy loop.
So guess what? That means your character doesn’t have to have a depressing, bleak life too. Their illness may be your characters’ main struggle, but it doesn’t have to be the fatal blow in your dystopian YA love triangle novel. Young spoonie characters, just like young spoonie people, can have lives that fit around their illness.
So why do we need spoonie characters?
Because everyone deserves to see themselves reflected in art and in society, plain and simple.
I want to put a mission out to any YA authors wanting to write a spoonie into their story. Your challenge is to create a complex, engaging character that reflects the lives of real spoonies out there. They might have pelvic pain, but they might also love reading fantasy books. They might be a pastel goth. They might run an etsy store. They might be studying to be a doctor. They might love the beach. They might foster rescue kittens.
They might actually be a human.
Write us and we will read.