On the Lack of Chronic Illness Rep in YA

Photo credit: e-Magine Art on Flickr
I’ve been thinking lately about chronic illness representation in YA. Or rather, the lack thereof.

There’ve been a few reasons why it’s on my mind, most obviously because I’m a chronically ill young person myself, and less obviously because I keep hearing about books with disabled protagonists who end up cured/not actually sick after all at the end and it’s just so frustrating.

I’ve already written about why the Miracle Cure is such a problem, both on and off the page, so this post isn’t about that.

This post is about the lack of representation because I’m tired of books with chronically ill characters ending one of two ways: they die (and their deaths are So Tragic), or they’re cured (because how else can they have a Happily Ever After?).
This is the message we’re giving our chronically ill kids: your stories are only worth telling if you die or have a miracle.

This is the message we’re giving our chronically ill kids: you can only be happy if you aren’t Sick.

This is the message we’re giving our able-bodied kids: Sick kids are Tragic Figures there to teach you to Appreciate Your Lives.

I asked Twitter for suggestions for books with chronically ill (not terminally ill) characters who aren’t cured at the end, which got a ton of RTs (thank you, Twitter!). For the sake of the post, I was looking specifically for physical illnesses, if only because there's a lot out there on mental illnesses (which is awesome!), but I rarely see anything about chronic physical illnesses, thus why I started looking for it. Anyway.

After help with investigating from @KatiTheWriter and @rachelacantor, and a lot of digging, I ended up with twenty-seven published books, plus one forthcoming. Thirteen were published between one and three decades ago—most of which are about diabetes—and five of those were part of a series. A few that I’m not counting were published around the same time and had die/died in the title so I think you understand why I’m not including them. So if we’re counting YA published within the last decade that isn’t death-focused, we drop down to fourteen.

Fourteen YA books published within the last decade with chronically ill characters. That's not even one and a half a year. Of them, half are about diabetes or epilepsy (which seem to be the most common two chronic illnesses covered in YA). And I haven’t read many of them, so I have no idea how they end. I hope not with a Miracle Cure or a death, but I don’t know.

Are there others out there that I missed? Very possibly. But the fact that it was so darn hard to find twenty-seven books published over the course of twenty-nine years really speaks to how much of an issue this is. It shouldn't be this hard.

And it sucks. It sucks knowing that with very few exceptions, the only times chronically ill kids get to see themselves represented is when they’re getting one of the messages above. Because what does that say to them about their worth and how the rest of their lives will look?

This isn’t okay. We need to do better.

I want chronically ill protagonists saving the world and having adventures while dealing with their illness.

I want chronically ill protagonists falling in love and learning that every part of them is beautiful, even the Sick parts.

I want chronically ill protagonists who handle their illness in realistic ways. Who have their Happily Ever Afters without a cure. Who are badass and sick simultaneously because the two aren’t mutually exclusive. And I want them in YA books, because chronically ill kids get the message that they shouldn’t be sick while young ALL THE TIME and just. I’m so tired of it. So, so tired of it.

There isn’t a quick or easy solution to this. But these messages are so damaging and hurtful to kids, and it’s so disappointing to me that it hasn’t been addressed.

We have an amazing community. We can do better. We have to.

Note: Since many have asked, here's a list of the YA books I found that have some chronic (not terminal) illness representation. Though I did research as much as I could, it's likely that I've missed some. I've not read most these, so I don’t know if their endings disqualify them with a Miracle Cure or a death, or in the case of epilepsy, I'm not sure if all of these are illness rather than injury-related (if you know either of these things, please let me know and I’ll remove it and update the post accordingly). Also, many of these older ones especially are very outdated (both in how the illnesses are viewed and treated), I have no idea if the representation is respectful (so please be careful), and not all of these books were rated highly because of other book-related issues. So with that caveat:

(1986) The Babysitter’s Club #1 Kristy’s Great Idea by Ann M. Martin—Diabetes***
(1987) Edith Herself by Ellen Howard—Epilepsy***
(1988) The Babysitter’s Club #13 Good-bye Stacey, Good-bye by Ann M. Martin—Diabetes*
(1988) When Dreams Shatter by Lurlene McDaniel—Diabetes
(1989) The Babysitter’s Club #28 Welcome Back, Stacey! by Ann M. Martin—Diabetes*
(1990) Jodie’s Journey by Colin Thiele—Arthritis
(1995) The Babysitter’s Club #83 Stacey vs. the BSC by Ann M. Martin—Diabetes*
(1995) The Babysitter’s Club #87 Stacey and the Bad Girls by Ann M. Martin—Diabetes*
(1995) Between a Rock and a Hard Place by Alden R. Carter—Diabetes**
(1995) All the Days of Her Life by Lurlene McDaniel—Diabetes**
(2000) The Last Book in the Universe by Rodman Philbrick—Epilepsy***
(2003) Sweetblood by Pete Hautman—Diabetes**
(2004) Song of the Magdalene by Donna Jo Napoli—Epilepsy***
(2006) Last Dance by Lurlene McDaniel—Diabetes**
(2007) The Absolutely True Diary of a Part-Time Indian by Sherman Alexie—Epilepsy, Hydrocephalus***
(2007) Zane's Trace by Allan Wolf—Epilepsy***
(2011) Throat by R.A. Nelson—Epilepsy***
(2012) Parallel Visions by Cheryl Rainfield—Severe asthma
(2013) My Life After Now by Jessica Verdi—HIV
(2014) Two Girls Staring at the Ceiling by Lucy Frank—Crohn’s Disease***
(2014) Top Ten Clues You’re Clueless by Liz Czukas—Diabetes***
(2014) The Summer I Found You by Jolene Perry—Diabetes***
(2014) Inland by Kat Rosenfeld—Undefined chronic pulmonary illness***
(2014) The Islands at the End of the World by Austin Aslan—Epilepsy***
(2015) Hold Me Like a Breath by Tiffany Schmidt—Autoimmune disorder***
(2015) The Way We Bared Our Souls by Willa Strayhorn—Multiple Sclerosis***
(2015) Because You'll Never Meet Me by Leah Thomas—Epilepsy, Cardiomyopathy***
(2016/17?) Unfolding by Jonathan Friesen—Epilepsy***

*According to TBC wiki.
**Found off YALSA’s Diabetes in YA Fiction for National Diabetes Month post.
***Found on Disability in Kidlit’s GR shelves.

Twitter-sized bites:
"I want chronically ill protags saving the world & having adventures while dealing w/ their illness." (Click to tweet)  
The lack of chronic illness representation in YA is a problem—and @Ava_Jae explains why. (Click to tweet)

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