A Thought on Illness Representation in Books

Living my life with chronic illness

As many of you all know I live with a chronic illness and have suffered daily with chronic pain for the majority of my life (since childhood). My experience with illness and pain is what inspired the name of my book blog; a little haze refers to the fog and haze that it constantly feels my life is shrouded in due to the effects of medication and pain. I chose that name because it is a way for me to take some agency over my illness as sadly, my illness dictates every other facet of my life.

So as you can imagine I strongly identify with characters in books that themselves suffer from either illness or pain or both, and have to live with disability.

The trope of the *inspirational character* with illness or disability

I always remember as a child being quite taken with Beth’s story in Little Women written by Louisa May Alcott, because she seemed to be so dignified in her illness. And I wanted to be like that. I wanted to be brave for my hospital appointments. I wanted to be good like she was…

But it was only as I grew older that I came to understand how that mentality was actually quite problematic. How it actually affected me negatively.

And that’s what I want to talk about in this section: how so frequently characters with illness or disability can be used to somehow inspire the able-bodied and healthy to live their lives in a better manner while the ill person quietly dies off-page in some *dignified* manner that never speaks to the truth of what being ill and/or in pain is really like.

This to me is one of the most problematic tropes out there.

There is nothing brave or beautiful about suffering. About living life with illness.

  • It is ugly.
  • It can be lonely.
  • It can lead to despair.
  • It dictates your life.

It shouldn’t ever mean that as a chronically ill person you are somehow obliged to suffer in silence. It should not mean that your pain need to be hidden from the world. That your feelings are somehow unworthy. That your truth is somehow to uncomfortable for others to accept.

“The only sick people I can remember seeing on TV smile gracefully and then die attractively. They’re never anger or bitter, they never feel cheated. They orchestrate beautiful gestures, they head into surgery, content to only say a few well-crafted, self sacrificing sentences that make everyone else grateful for their own health and then they’re gone forever. No abject, terrified misery ever overwhelms them. It’s never about the sick person. Whenever anything too unpleasant or painful or – God forbid – to do with the body starts up, the camera cuts away, leaving the sick person completely alone. Never does anyone let on feeling anger so great it can’t even begin to be translated into words.”

Please Read This Leaflet Carefully by Karen Havelin

This harmful trope was used in Veronica Roth’s ‘Carve the Mark’

In this book, the main character of Cyra had chronic pain and what I found to be incredibly harmful was the terminology used to describe her pain. It was referred to as a ‘currentgift‘. In the book’s glossary, a currentgift is explained as follows: 

Thought to be a result of the current flowing through a person, currentgifts are abilities, unique to each person, that develop during puberty. They are not always benevolent.

Throwing in a line about how ‘currentgifts’ are not always benevolent does not excuse the fact that this book used offensive terminology to explain the suffering of the main character… calling it a ‘gift’… disgusting! Neither do I think that chronic pain is an ability. An ability???? I certainly don’t do magic tricks with my chronic pain. Unless you want to see how easily I can swallow large painkillers with barely a mouthful of water so I don’t vomit!!!!!

So, in my opinion, calling pain a gift and an ability in this book was an attempt to somehow romanticise the notion of chronic pain and glorify the suffering of Cyra…

And that to me is something that needs to stop. If you want to read more about Carve the Mark you can check out my review HERE.

An example of better illness/disability representation

A YA fantasy book that I think has a much better angle on disability rep is ‘A Curse So Dark and Lonely’ by Bridget Kemmerer. In this book Harper’s cerebral palsy is never played down as something she should hide, nor is it essentially all there is to her character i.e. her disability is a part of who she is; not something that can truly ever be forgotten but yet it is not her whole persona. She feels much more realistic than Cyra as Harper is 100% unapologetic about her disability and never is forced into that role of having to silently suffer. If you want to read more about A Curse So Dark and Lonely check out my review HERE.

Can characters with chronic pain, illness or disability ever have a truly happy ever after?

Please note that there will be spoilers for two books in this section:

‘Everything Everything’ by Nicola Yoon and ‘The Friend Zone’ by Abby Jimenez. Both of these books in my opinion have problematic endings and therefore I will be discussing them in some detail. If you do not wish to be spoiled for either book then skip ahead to the next headed section.

*Spoiler section*

An example of an ableist ending in YA

A few years ago I read the very cute YA read ‘Everything, Everything’ by Nicola Yoon. The book is pegged as a YA romance between a chronically ill girl and the boy next door. What I found to be problematic in the book was that the ill girl, Maddy, was led to believe that she had Severe Combined Immunodeficiency Disease or SCID for short. This meant that she could not leave the confines of her house as her immunity was so lacking that the most simple of things (such as the common cold) would be life threatening to her if not even terminal. But Maddy fell in love with the boy next door; they communicated through texts, email etc. until one day Maddy decided that it was worth risking her life for this love and she left her house and eloped to the beach with the boy next door.

To me this sends the wrong message to anyone with any sort of life limiting or life inhibiting disease. It says that your life as a person with an illness or disease is not worth living, there is no value in protecting yourself from getting sicker because without love and romance then what is the point of your life…

Do you see where I am coming from?

But then to add insult to injury, it turns out that Maddy does not actually have SCID and in fact her mentally unwell mother had been keeping her indoors for no legitimate medical reason.

And therefore the book allowed the character of Maddy and the boy next door to have their romantic happy ever after as they skipped off into the sunset together.

And that to me is disgusting.

It again is saying to the person with a chronic illness that the only way you can fall in love or have anyone fall in love with you is if you are not sick…

I was so hurt when I read that ending. It felt like a slap in the face to me. The book was sold as a love story for an ill teenage girl… I was an ill teenage girl. I am an ill adult woman now. And I would like to see realistic representation of happy ever afters for people with illness. Do not conveniently kill us off or suddenly wash away our illnesses because we can’t do that in our lives…

An example of an ableist ending in adult fiction

An adult book that I read this year was ‘The Friend Zone’ by Abby Jimenez. This book was pegged as a book with an MC with fertility problems who finds love… I thought my prayers had been answered. I am an infertile woman. It has been a source of sorrow for me since I was a teenager and learned of my infertility status. It makes me reluctant to form romantic relationships. So to hear that a rom-com book was going to give me a realistic portrayal of such was a joy…

My joy was short lived.

As at the end of the book the infertile female MC got pregnant and it seemed to validate the reasons why her love interest stayed with her…

And look I get it. Some women do have a surprise bundle of joy and that is truly a gift for them and my heart is so grateful that they can have that…

But sadly this is not the common story…

So why could this book not have given us a happy ever after where the female MC accepted her body, where the male love interest loved her for her and where they got their happily ever after from finding each other??? And then maybe surrogacy, or adoption, or fostering… just not pregnancy. This completely invalidated the positive message of the book about self acceptance and gave a false happy ever after to the woman with a chronic condition.

Ableism occurs when authors use a magic cure for a tidy ending

Therefore, what I want to know is why do happy ever afters in books with chronically ill people always have to erase their illness in the end? It feels so invalidating that I do not ever see happy endings where people still have their illness/disability etc but also find other joys in their lives.

Please authors, show us disabled and/or ill people that we too can have an attainable happy ending. Don’t erase our truths. It is already bad enough that many of us live with invisible illnesses and disability. Don’t make us even more unseen than we already are.

*End of spoilers*

To read my full review of ‘Everything, Everything’ click HERE

To read my full review of ‘The Friend Zone’ click HERE

The most accurate depictions of chronic illness and pain that I have read

I want to finish my rambling thoughts with two book recommendations that I believe show incredibly realistic characters with chronic illnesses.

A brilliant example of chronic illness in YA

The first is ‘Girl in the Window’ by Penny Joelson. This is a contemporary YA that has a lead character, Kasia, who has ME (chronic fatigue syndrome). The book shows the realities of Kasia’s life but it also doesn’t rob her of having a life worth living. It shows the pain and ugly realities yes, but also shows her incredible spirit and speaks of the little things she finds joy in. I really cannot recommend it more highly. My full review can be read HERE.

A brilliant example of chronic illness in adult fiction

And the other book I wish to recommend is one I read recently. It is called ‘Please Read This Leaflet Carefully’ and is written by Karen Havelin. It is about a woman with chronic pain from endometriosis and I was left speechless by it. It doesn’t hide the ugliness of illness but also I found it to be quite hopeful and comforting, because it shows the true resilience of the lead character as she deals with her pain. My full review can be read HERE.


Your thoughts and opinions

Have you guys read any books with disability / illness rep?

Any that you think are harmful and/or probelmatic in some way?

Or have you got a recommendation of a great illness / disability rep?

Let’s chat in the comments below!

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81 thoughts on “A Thought on Illness Representation in Books

  1. Yes! The Friend Zone made me so very mad! I loved everything about it up until that ending! I know so many people who have struggled with infertility or are unable to conceive, and while I was reading I was thinking what a wonderful book this would be for them up until that ending! They had surrogacy all lined up! It would have been a much, much stronger and more powerful ending and I’m still so mad that the author thought that a happily ever after required a “fixing” of Kristen’s infertility.

    Although, on the bright side, recently I have read some books with fantastic chronic illness rep. If you haven’t already read Sick Kids in Love, I’d HIGHLY recommend it! It was one of my favorite books of last year and it follows two chronically ill teens falling in love, illnesses and all. It was absolute perfection. And if you like romance there’s also Get a Life, Chloe Brown, where the main character has a chronic illness/chronic pain as well, and that is addressed throughout the entire book. The last book I’d recommend is Wild and Crooked. It has a main character with cerebral palsy and reading from his point of view was fantastic. There were so many little details included to show the little ways people don’t realize how his disability affects him, yet at the same time his disability isn’t the only thing that defines him.

    I now I just left a really long rant on an older post, but I’m very passionate about this. I have read so many books with terrible representation of illnesses, and I’m so glad that I came across your post addressing all the problems that these books contain.

    Wonderful post!

    Liked by 1 person

    1. Thank you so much for your lovely comment Malka. I’ve been meaning to update this post because I have indeed read both Sick Kids in Love and Chloe Brown since I wrote this. (Have reviews for both here on my blog) And both books were terrific rep wise.
      I also just recently read an ARC of Non Pratt’s new book, Every Little Piece of My Heart, and that has really good chronic illness and pain rep too.
      I haven’t read Wild and Crooked, I don’t think I’ve even heard of it. So that is definitely one that I will seek out. Thank you so much for highlighting it.
      Much love xoxo 💚💙💛💜🧡❤️

      Liked by 1 person

  2. I’ll be honest, I actually loved The Friend Zone by Abby Jimenez. It was because I learnt of a new condition, which I’ve never heard of. I’m always interested in finding out about illnesses and how people deal/live with them. Where I live, illnesses are considered “huge weaknesses” and hence barely anyone speaks about it. Since we still have arranged marriages, it’s considered that women with fertility issues will not get a husband, and hence no one speaks about it because the woman’s “worth” goes down. In fact, there was even a local TV show where the lead was a unmarried woman in her 30s who was a shame to the family because she was infertile. That severely brought down my worth, because I face infertility issues as well which I got genetically from my mum. All of that pushed me to learn from books. That’s why The Friend Zone appealed to me.

    I felt robbed when she found out that she was pregnant, as well. The story was going so well, with her accepting her condition and still finding love and knowing that she can have a happy romantic life. Instead, in the epilogue, it felt like a cheap out. It’s a sore spot for me in the book, but I managed to put it out of my opinions because I loved the rest of it. I wish authors had more books which portrayed illnesses well too. I guess it’s just something we can hope for over time.

    Like

  3. First of all, sending all the hugs in the world because this is such a vulnerable post and thank you for sharing a piece of you with us. I don’t have chronic illness or know how it feels to live with it, but my mom actually has MS and I watched her struggle with doctors brushing her off and not believing her for way too long in the beginning. Love love love love you Emer.

    Second, thanks so much for bringing this perspective into my life. So Carve the Mark has been in my bookshelf since it came out and I haven’t read it. Recently I heard some things that made me go “yikes” from a racism perspective, so reading about it it’s flaws from a chronic illness perspective, I fully feel like the can get rid of it without any regrets. I’m also really excited to see you say how happy you with with the rep in A Curse So Dark and Lonely because I just started that book so this makes me excited.

    I also really appreciated your thoughts on Everything, Everything. When I read it 3 years ago I loved it because I thought the story was so compelling, but it didn’t cross my mind how Maddy not having the illness at all was a form of erasure and hurtful to people who actually do live with Chronic Illness. With that mindset, I can definitely say that it’s no longer a 5 star read to me, even if I did enjoy it because erasure of any kind is never ok and even though it’s not your job to educate us ignorant masses, I really appreciate you taking the time to express yourself and do so ❤️❤️❤️

    I also hope this all made sense.

    Liked by 1 person

    1. Oh my gosh so much love to you and your mum!!! I know that struggle of not having doctors believe you or thinking you’re over dramatising… SO THE BIGGEST HUGS TO YOU BOTH!!!! And omg thank you for your kind words. They really mean so much. I’m so grateful to everyone who has reached out to me since I wrote this post. It has given me such comfort :)))))

      And oh yes carve the mark is INCREDIBLY racist!!! I didn’t go into that in this post (but have in my review of the book) but it’s so problematic in that regard too that I can’t even comprehend how it was published. But there are allusions given to a light skinned race being civilised and then the dark skinned race being the negative aggressor… And the descriptions used… I can’t. It’s so problematic. An utterly offensive train wreck of a book.

      And I feel you with everything everything. It is super cute!!! Like it us such an adorable read with all those cute illustrations and everything. I was really enjoying it until the ending. And it’s so easy to miss the problems. Like take All the Bright Places. I loved that book when I read it. But it was only after reading other people’s reviews on GR that I realised how harmful it was with its mental health rep. So to me that’s what’s so great about the book community. We are all sharing and learning from each other. And that makes me feel super positive

      Thank you so much for your gorgeous comment. I am so deeply moved by your kindness <3333333

      Like

  4. Thank you for writing this. I am, in particular, EXTREMELY appalled at the book The Friend Zone. I’ve never heard of it but god does that ending sound horrifying. I’ve been interested in reading A Curse so Dark and Lonely purely because I think it has a beautiful cover so I’m glad to hear some good things about illness representation in it. Please Read this Leaflet Carefully sounds like an amazing read.

    Liked by 1 person

    1. Thank you so much Jenny!!!
      Oh don’t get me started on The Friend Zone. It’s so problematic and so many people who have read it sadly don’t understand why because they see the heteronormative, nuclear family and ableist ending and misinterpret it as a vision of happy ever after.
      But definitely check out a curse so dark and lonely. It’s got a very refreshing take on disability rep! Thanks so much for your comment Jenny :)))))

      Liked by 1 person

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