A Thought on Illness Representation in Books

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.

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*

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 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.

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.

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.

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.


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!

79 thoughts on “A Thought on Illness Representation in Books

  1. *biggest hug ever ever ever* emer this is such a touching post. I never want to let you go. this actually infuriates me and I feel you on this so much. the fact that they invalidate this pain upsets me so much. I don’t personally know how it feels but my mom lives in chronic pain from her stroke and it always infuriates me. just how books that mock mental illness and other things do.
    I am always here for you my friend 🙂 always

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    1. *hugs you right back* thank you Amanda. <33333 I was quite nervous about writing this post as it feels quite revealing to me. But it keeps happening in books, tv shows, films etc etc… It's just a constant erasure of disability and it can be really distressing to see that as someone who lives the kind of life I do. And yes, it's 100% done with mental illness too. The amount of times I've read a book where "love cures depression" is far too many times to be acceptable. Yes I want fictional reads but I also want authentic representation. If authors can't authentically write a book with the correct sort of representation then they really shouldn't be writing on a topic that they know little to nothing about.

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  2. I completely admire and respect you for your honesty even though I know how much it hurts when You open yourself like this and try to make others understand. So THANK YOU. ❤️
    I just want to comment about a book I’ve read recently (The friend zone) If you don’t mind ☺️
    The friend zone was entirely honest through out the story, yes the ending was “miraculous” as we would call it in real life, but why Not, it’s a book after all, yes, it’s amazing when the authors give us (realistic, honest and logical) stories BUT, it’s also awesome when they give us HOPE, possibilities… Things that maybe won’t occur in real life, because in my opinion we need to hope. Don’t misunderstand me, If the ending was as you’ve described it, I WOULD HAVE BEEN happier and more satisfied. At the same, I liked this ending too, because it gave me hope. ☺️
    Again thank you for this GREAT post.
    Just wanted to share my view ☺️

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    1. THE FRIEND ZONE SPOILERS

      Thank you for sharing your viewpoint Lana :)))) It means a lot to me that we can have honest conversation about these at times difficult and sensitive subjects. <3333
      I greatly appreciate your compliments because this was a difficult blog post for me to write. And I 100% appreciate where you are coming from re having a hopeful ending. And I totally take your point that this is fiction.
      I think hope is one of the most important feelings we can have as human beings because it helps us get through the darkest of days. But I do have to disagree with your interpretation of what could be termed a hopeful ending. I think having the MC fall pregnant is quite an able-bodied, nuclear family vision of hope. The message of hope that I believe should have come from this book is that infertile women are no less worthy of love and that it is hopeful that the right partner will come along to love them just for themselves. Not under the guise of only being worthy of love if they can biologically produce a child. I think that there is hope in surrogacy, there is hope in adoption, hope in fostering… All of these would have given a truer vision of a hopeful future. And therefore I firmly believe that the ending in the book, and the author's note contained therein, are erasing disability and not actually providing a hopeful message for anyone dealing with infertility.
      But thank you so much for sharing your thoughts Lana. <3333

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  3. this is such a thoughtful post. thank you so much for sharing your experience and speaking about this in such an honest way. your post was really informative on problematic tropes in books that are meant to be seen as ‘inspirational’ and instead are so hurtful to people who experience that kind of pain on a daily basis.

    i really liked how ‘a curse so dark and lonely’ handled harper’s cerebral palsy too and never played it down or erased it from her character just so she could have an unrealistic happily ever after. im so sorry to hear that ‘everything everything’ was so hurtful. especially in the light of having the SHOCKING PLOT TWIST actually be such blatant erasure.

    i’m really interested in reading ‘girl in the window’ and ‘please read this leaflet carefully’ they sound so real and unapologetic.

    thank you so much, sending you lots of love 💖

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    1. May thank you so much!!! Your words have really helped to put me at ease because I was supremely nervous about posting this. It was really only when discussing with a close friend that I realised that I am own voices for illness representation and then I thought I felt somewhat… Qualified is the wrong word… But I guess that I could share my experience???

      I was so pleasantly surprised by a curse so dark and lonely. I thought that book provided the right amount of hope with the right amount of gritty reality re Harper’s disability. I really wasn’t expecting it to be as good as it was in that regard.

      I really couldn’t recommend Girl at the Window more highly. It’s on the junior YA spectrum but it gives such an authentic description of a teen’s life with illness that I just cried buckets reading it. I felt recognised. No longer erased. My teen years were mired in illness and erasure of that illness by so many… I only wish I had had that book when I was 14 or so.

      And as for adult fiction Please Read This Leaflet Carefully is a tour de force. It moved me so deeply and I cam only hope that more people read this book and that it informs the able-bodied public psyche about what living with chronic illness is like

      Thank you so much May <3333 :)))

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  4. This is such a spectacular and thoroughly detailed post, just want to say that first and foremost. 😀 Can relate very much to liking Beth the most of the Little Women for the same reasons. Have been curious about Everything Everything and have been meaning to read it someday, will go into more guarded now as I wasn’t aware of its possible issues. I can relate to the heroine’s supposed illness so it will be interesting to see how I feel about the ending. Glad you included some recommendations for good rep, this is my second time hearing of Please Read This Leaflet Carefully and I have a close friend who could definitely relate to the MC, glad to know it’s good! As for good rep in other books, honestly I’ve rarely come across such unless the book is #ownvoices and there seem to be few titles with disabled MCs.

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    1. Thank you so much Kitty!!! Your words are more than kind.
      I truly hope that I haven’t spoiled Everything, Everything for you in any way and perhaps instead you will be able to enjoy its cuteness now that you are going into the read of it with eyes wide open as they say :)))
      Please Read This Leaflet Carefully is a stellar read. I think it will be my favourite book of 2019 come the end of the year.
      And it’s funny that you say own voices illness rep seems to be the best because the ya book I recommended, Girl at the Window, is one voices for chronic fatigue syndrome. But I don’t think that authors should shy away from writing characters with illness/disability. Because with proper research and good writing I believe that any writer can write authentic stories. So while I fully and wholeheartedly support own voices on pretty much any social topic I definitely think there’s a place for good old fashioned research too.
      Thanks so much for commenting Kitty. I was so nervous posting this. Have been stressing over it for two weeks now lol! :))))) <333

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  5. This is a really touching and thoughtful post. Thanks for sharing and I can see why these books can be problematic. I haven’t read many books with a chronic illness besides A Curse so Dark and Lonely and TFIOS. I hope authors can use the criticism they get and make better books about chronic illnesses.

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    1. Thank you so much Joanna!!! I hope so too. I think the more these topics are discussed and the more they are written about the better. I really loved TFiOS actually. It’s one of my favs because I think John Green got a great handle on the mindset of someone who is ill while also writing a beautiful (if a little cheesy) love story :))) <333

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      1. I’m glad that you liked that one! It had me bawling like a baby 😅😂. I also think that you are right. The more it is discussed the more inclined they will be to do better.

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        1. Oh I cried my heart out too. I much prefer the book to the film, I don’t think the film did justice to the illness rep aspect because we couldn’t quite get inside Hazel’s head anymore and instead it played up the romance aspect a bit too much for me. But the book will forever be one of my favs :)))

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  6. Thank you for this post, I feel for you so much on this topic. There are way too many instances in books where both physical and mental illness gets erased or magically cured by the end of the book and it hurts. In real life the bad stuff doesn’t just go away, most of us have to deal with these things for the rest of our lives. There are so, so many people in my life who are chronically ill or disabled and I wish that there were more accurate representations of that in media. I think it’s so important to talk about stuff like this so thank you again for posting this!

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    1. Thank you so much for commenting! I 100% agree with you. Whether or not it’s a physical or mental illness, too many times the authentic story is sacrificed for narrative and ultimately leads to disability erasure. What I find especially irksome in books focusing on mental health is how frequently a character is *saved* or *cured* by love… As if depression or similar is just caused by a lack of romance… Smh authors.
      Thank you so much for your kind comment. I feel so much support from everyone who has read this post and commented. I was very nervous posting it but you and others like you are putting my mind at ease <333 :)))

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      1. Being open about personal experiences can be really beneficial for everyone! It’s always nice to see there are other people who go through the same sorts of things, even if they aren’t great things.

        And on the topic of characters getting fixed by love, ooohhh boy is that a toxic trope. I’ve had a few people actually break up with me over my mental illness because they “should be enough to be happy” or they “can’t handle the low points”. Like I can’t help that my brain wants me to give up even after getting into a relationship *eye roll*

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        1. Oh that is such a harmful trope isn’t it. It really erases mental health as a genuine health problem and brings us back to the days of saying someone was just a nervous sort of character etc. Very problematic indeed.
          I’m sorry that you’ve had to experience such hurts like that and having your own mental health issues ignored and expected to be swept aside. Thank you so much for sharing. Sending you all the hugs <3333

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  7. What an awesome post! It’s really powerful to hear your thoughts and experiences, so thank you so much for sharing your perspective and also such thoughtful analysis. You do such a great job of laying out why some books are problematic and others are effective.

    I took some college classes in illness in literature and art, and some of the highlights that we read came out of the 1980s and HIV epidemic. Particularly The Normal Heart and Angels in America are really compelling works. They were also powerful advocacy pieces and put a spotlight on the disease when it was not being widely researched. Obviously this was more of an acute illness when these plays were written, though, so quite unlike the chronic illness experience, I imagine.

    Thanks again for sharing!

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    1. I am overwhelmed by all the wonderful support I am receiving. A million thank yous. It wasn’t easy to write this post as it is something that I am so deeply affected by but I feel so much positivity from berthing commenting that I am now so glad I got over my nerves and posted.

      I have seen the tv adaptation of Angels in America, a wonderful piece definitely. And agree with you that stories like that are so important to be highlighted and told.

      Thank you again for your kind words. They truly mean so much <333 :)))

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  8. Thank you so much for writing an insightful post! Revealing this to your readers can be such a nerve wracking thing, but I feel like this post was so important. Thank you for writing this post. You have people supporting you in all that you do❤️

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    1. Jess you have no idea how much your words mean to me. I was so nervous to post this but I feel so much support from you and others that have made me feel I am doing the right thing in becoming part of the narrative on books with illness rep. Thank you so much for your kindness <333 :)))

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  9. Wow, this post!!! Thank you so much for sharing your thoughts and being so open with us about your experiences, Emer! You’re amazing 💜 Every time I read one of your posts, I come away thinking harder about what I’m not consciously aware of when reading. I’m embarrassed to admit that I wouldn’t have thought about how these books could be problematic re. chronic illness, but I can definitely see it now 😞 I hope that authors (and others!) realise how harmful their words can be and start to tell better stories. Amazing post!!

    Also, I’ve heard so much about ‘please read this leaflet carefully’ and I’m so looking forward to picking it up. Gigantic panda hugs being sent your way! 🐼

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    1. Aw thank you my dear friend!! It means a lot to me that everyone is being so positive about this post so much love dearest Dini. <333333

      I don't think you should feel embarrassed at all because positive illness rep in books is not something that truly gets discussed enough and unless you have first hand experience of living with chronic illness like I do then there's a lot that you can miss out on. Like I myself have missed things in the best especially re mental health issues because I just fall for the cheesy romance plot. But I think it's just through more discussion of books like these ones I mentioned that we all can inform ourselves better. I don't feel mad or aggrieved by the authors that have written the books in this post that I have termed problematic because they didn't set out to be harmful. They all set out to write moving stories and I respect that greatly. But by more honest and open discourse we can encourage both them and readers to think a little differently in future :)))))

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  10. This is such a good post Emer – thank you for sharing! I love learning more about bloggers’ lives – there’s always so much more going on behind the scenes than people let on, but I really sympathise about this lack of representation.
    I was wondering about your thoughts on another sort of disability category – disabilities that are presented as superpowers. I’m thinking of characters like Daredevil, but I’m sure there are plenty more in books that I haven’t thought of – do you think that this is positive representation? Or just more of a false and rosy view of actually living with a disability/chronic pain?

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    1. Thank you so much Hannah! I really appreciate your kind words. <3333 It's funny, only last night my friend and I were discussing this kind of rep with super powers as she was telling me about VE Schwab's Villains series. I think book one is called Vicious??? I have not read it nor can I remember much about Daredevil having seen only bits of that well dodgy film years ago (and I don't read comics etc) so I don't have an informed opinion about it, but I think as long as pain or suffering is not romanticised or erased then it's probably a good thing. Because it is important to show that people with disabilities are capable of being more than just their disability, that they can do just as much with their lives as able-bodied… Because yes, living with disability be it physical, mental or whatever is not rosy as you say but it is always important to show that the disability alone does not define a person. :))))))))))

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      1. Exactly – it’s important that a disability isn’t just an add-on that can be taken away for the same of a wholesome plot, but instead accepting it as part of a person. I really enjoyed Vicious and would absolutely recommend it but would be very interested in your thoughts!

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        1. My friend and I were just discussing that Vicious series the other night after I posted this and she, like you, was wondering what I would think about it so I definitely think I’ll have to read it (even though I didn’t like ADSoM by Schwaab)

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  11. Love this post! Everything, Everything rubbed me the wrong way too, along with All The Bright Places. I understand the attractiveness of using illnesses of all kinds as a plot device but really, it isn’t something to “drive” a story or create a plot twist. These are things that REAL people will have to deal with for the rest of their lives, and negative portrayals of said illness is offensive and circulates incorrect information about dealing with the illness

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    1. Thank you so much Destiny!!! There are so many problematic instances of illness rep aren’t there. *smh* Me Before You is another example. And what I find quite troubling is that a lot of these problematic books are becoming films and the problematic tropes and stereotypes are continuously being reinforced. It is so tiresome that there are not more own voices beta readers / early arc reviewers that can truly give authentic feedback to authors. I don’t believe that illness rep is the remit of purely own voices authors as I like to think that those who are able bodied are capable of both detailed research and empathy but when frequently the problematic tropes pop up in books by able bodied writers it makes me wonder….
      Thank you so much for your comment Destiny. I feel so supported by all my blogging friends with all of your lovely comments <333333333 :))))))

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  12. Thank you for sharing your story, and emphasizing how the unrealistic HEAs can erase the realities of people with chronic illnesses—or make it so that they only function to ~inspire~ the able-bodied.

    I 100% agree with your review of The Friend Zone (plus there were other things that just rubbed me the wrong way with that one)…and the idea that romance and love is the ultimate goal and can cure everything (or is worth more than life itself).

    The Vorkosigan series by Lois McMaster Bujold follows Miles Vorkosigan, a person with disabilities in a society where “mutations” are taboo (infanticide is common). Miles is brilliant, but ultimately keeps bumping up against the limitations of his body (sometimes crashing into those limitations). If you like sci-fi, maybe?

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    1. Thank you so much for your comment Laurel. :)))))))))
      Oh I had plenty of other issues with The Friend Zone too but I just stuck to the illness rep here lol! Such a shame as that book had such potential.
      And yes, 100% giving an unrealistic happy ending that erases illness / disability is not something that should ever be included in books. It really is insulting how illness is just viewed in this *inspirational* light. I can guarantee you there is nothing inspirational about living my life with chronic illness. I am not brave nor stoic nor any of these *inspirational* terms that frequently get bandied about when ill and/or disabled people are discussed. I am simply someone living my life the best way I can no different to someone who is able bodied and therefore these fantasist notions of illness really need to become a thing of the past.

      And thank you so much for the rec!! I love sci fi and this story you have described thoroughly fascinates me. I am 100% going to read it.

      Thanks a million Laurel. It’s so nice to have received all the support I have for this post. It really has made me feel like I have a valid own voices opinion when I had been doubting myself <3333

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  13. Totally agree with you on so many points here! Dealing with one myself I really do think it’s important that chronic illness is depicted honestly in fiction and it seldom is. I kind of hate when the ill or dying person is portrayed as being so benevolent and selfless and positive and never irritable or furious – it always makes me feel inadequate! Like I shouldn’t be angry or depressed and I think that can be really damaging. Great post 💛

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    1. Exactly Christine!!! It’s just so harmful to portray any sort of long term illness / disability in that regard. I hate terminology like being brave or stoic or inspiring… It’s like well no. I’m just living my life no different to anyone else and just because I have a life marred by illness doesn’t just suddenly mean I am a freaking martyr!! I am not just my illness. I am not just my disability. They are parts of who I am but they are not just all I am. Frequently in books I find that characters with illness / disability have no personalities outside their illness and it’s like huh??????? As you and I both know we are so much more than just what ails us. So don’t just expect ill characters to suddenly shut up because it is uncomfortable for able-bodied people to be faced with the entire picture of what living with illness means. We are no less complex as able-bodied and should be portrayed as such
      Thanks so much for your comment Christine. Sending you all the hugs. I hope today is a good day for you. Lots of spoons I hope :)))) <3333

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  14. Wow, this is such a powerful and thought-provoking post. Thank you for sharing your experiences, I think it’s a really brave thing to do ❤️The book blogging community has made me much more conscious of representation in books and insightful posts like this are exactly why. Sending lots of good vibes your way! X x x

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  15. Thank you so much for sharing all of this, and for including two books that actually do depict chronic illness in a realistic way. I am always wary when authors try to write about experiences that are not their own. I have also turned away from books that I don’t think accurately portray things that I have experienced, though none of mine compare to what you’ve described here. I think it’s very brave of you to share your experiences and your perspective. Thank you for this post!

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    1. Thank you so much for your kind words Hannah!!! They really mean so much. It’s such an important issue to me, and while I don’t want to be one of those people who say own voices should be the only ones tackling these issues in novels, it does get hard to believe that those who aren’t own voices are truly able to empathise and to do enough research!!
      But I will believe it. I will believe in empathy and research and deeper understanding. Because I don’t think any of the authors of the problematic books I listed in this post meant to cause harm or upset. It just is a lack of knowledge right now. So hopefully with more open and honest discussion stories like those ones will be erased from our futures rather than erasing the truth of illness and disability. :)))) Thank you again Hannah <333

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  16. My dear lovely Emer *thousand hugs* I’ve known you for quite some time and you never let your pain to identify yourself, as well as you never glossed over it. You are the bravest person I know, and you were always honest and open about your pain, and I’ve learned a lot from you about people who live with chronic pain. This post is quintessential and helpful for those who want to see a true representation of illness in literature from a person who knows first hand about the issue. I remember your review fro the Crave the mark and how appalled I was about the way the author glossed over a very real and important problem; I removed the book from my tbr back then, and I have no regrets!

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    1. Aw Nastassja!!! STOP MAKING ME EMOTIONAL!!!! :)))))) Thank you so much my lovely friend. Your words mean so much to me. <333
      Oh Carve the Mark… Such a problematic book. Even if there was better illness rep it's still very much got racist undertones and has issues where it reinforces rape culture instead of properly illustrating its effects. I really don't understand how it got through the editing process at all!

      Liked by 1 person

  17. I really love your article! And from the bottom of my heart, thank you for it!
    I’m really sorry to hear about your chronic pain, I personally have a neurodegenerative, autoimmune and incurable disease that is also disabling. It reduces my quality of life as well as my mobility but also shortens my life expectancy and I felt so touched by A Curse so Dark and Lonely. I realised it while reading the book, but even more when I arrived in front of Brigid at BookExpo and tried to explain what her book meant to me, and started sobbing uncontrollably. I’m definitely looking for more representation in books and I’m so thankful for your recommendations.

    Liked by 1 person

    1. Laurie my friend SENDING YOU MASSIVE HUGS!!!!!! And thank you so much for your kind words and your honesty. <3333 It's really not easy is it… Having to deal with illness and disability. Sometimes life just freaking sucks! But omg, you met Brigid!!! I honestly think A Curse So Dark and Lonely does not get enough praise for its disability rep. It was SO well handled!!!! So well handled that I am fearing for the sequel because it's not from Harper's PoV and I don't know how I feel about that. I don't want her voice and that illness rep to brushed aside but I'm gonna trust Brigid!!! Thank you so much for sharing your experiences Laurie. I know it's not an easy thing to do, much love my friend <333

      Liked by 1 person

  18. THANK YOU! As someone who has chronic pain and and has endometriosis, this post was so spot on! I wish we had more book bloggers or book reviewers speaking up about this or even about mental health because it feels like in the book community that no one really talks about disability/illness or mental health. This is such an important thing to discuss and bring up especially now because it feels like in the book community we’re at a point where we’re talking more openly about the mental health representation in a book, but we’re all playing catch up or dodging a bullet chronic illness. And I’m so grateful that you are one of the people sparking a movement to start a discussion on chronic illness and disability. Even more so grateful because now we can open the floor up to those who don’t have a chronic illness or disability to get their opinions on the matter.

    I read an arc this year called Unexpected and the way infertility was handled almost painted the entire thing in a humorous light or that having fertility issues can just easily be solved by “Googling” everything. It also painted consulting professional help in a really bad light and the entire thing blew me out of the water. I was stunned that an author thought painting a topic that’s serious in such a way was okay. I wish more authors were considerate of how they paint chronic illness and disability because how they write those characters can inflict good or bad upon the reader. Not to mention, it can have an affect of those who that character represents. However, I’m glad we’re moving into future years where there are more authors who are doing their research or really taking the time to make sure they’re giving proper representation for the disability/chronic illness representation.

    Honestly, I wish someone would put together a list of books that have accurate or really well written representation for chronic illness/disability. I think that’s a list, we as readers, all need right now. And thank you for the book recommendations! So many people have been telling me I need to pick up A Curse So Dark and Lonely and this might be the push that I’ve needed to go pick it up!

    Liked by 1 person

    1. Omg thank you so much Autumn!!!! And thank you for sharing your story and your experiences. <33333 I know it's not easy to be that revealing as it took a lot for me to be able to put into words all I was feeling. I feel so happy that this blog post has connected with so many people. :))))

      I very much agree with you that chronic illness and disability are incredibly poorly represented in books, and also in tv and film. There is such a misunderstanding out there that leads to incredibly ableist ideas. And I think it comes from a place of ignorance rather than any intentionally offensive attitudes. The idea that erasing an illness gives hope rather than understand that a life with illness and/or disability need not be hopeless. Though people like you and I are limited in many ways due to our bodies it still does not mean that our lives are not worth living just as they are.
      And as an endo warrior I really would recommend Please Read This Leaflet Carefully by Karen Havelin to you. The main character has endometriosis (and allergies) but it's the descriptions of her life that really made me feel seen. I found a book that made me feel so less alone, it helped make sense of my pain both physical and mental. I don't know if you ever read slightly more literary fiction but at any rate it is incredibly readable and definitely worth the read.

      I would love to put together a list of books with fantastic chronic illness and/or disability rep. Like you I think there have been massive (and much needed) strides taken in the book community with regards to mental health issues and that is something to be hugely celebrated. It's still not perfect by all means but there definitely are more YA books especially that really handle mental illness in incredible manners. But I really feel there is a huge lack of understanding of those of us who live with more physical ailments. Any time I hear of a book with illness rep I like to read it. But sadly, all too often I find issue with the rep. It feels glossed over in favour of a sugar coated ending. Or the character suffer with tremendously unrealistic dignity and the harsher realities occur off page.

      I will look up that book you referenced with the problematic rep. I may decide to read it if only to highlight its negative aspects as if I already know going in that it's problematic then it won't negatively upset me.

      But hopefully with more of us with 'own voices' experience of disability and illness coming out and discussing these problematic books on our blogs, instagram, Goodreads etc that we will begin to see attitudes changing. And have more books that truly give an authentic rep of life with chronic illness and disability.

      Thank you so much for commenting Autumn. Sending you all the love my friend. I hope that today is kind to you <3333

      Liked by 1 person

      1. I am too! I mentioned on another blogger’s post about critical reading how much I loved these hard hitting articles because they have so much potential and these articles have the chance to be seen by so many people. Plus, these articles kick in the door and are more like, “THIS. IS. A.THING. Now, let’s talk about it!” No one wants to be the person to kick in the the door, but when they do, it connects with so many people and touches so many incredible, beautiful souls. Reading you talk about all of your feelings and thoughts, these are thoughts and feelings I have had since I was a child. I mention in my ‘About Me’ section that I was very sick all the time as a kid and couldn’t really be around other kids. So my life was spent in my school library reading and among all my reading, as a child to now as an adult, it is rare to find ANYONE who is kicking in the door and saying to the world, “HEY! This a thing. Many people go through this all the time. We need to shed light on it, we need to talk about it, let’s open a discussion,” and just those tiny ripples are going to make bigger ripples happen. And I hope YOU know, that this article hasn’t only touched me, but this article is going to touch many more souls who feel the exact same way we do.

        I absolutely agree with you that I think a lot of content comes from ignorance or even a lack of education. I wish more people could see that those with chronic illness/disabilities can still live their life to the fullest. We have good days and bad days like anyone else does.

        As for you being an endo warrior, it definitely makes me feel less alone in the book community. I’ve met you and one other person so far in the book community with endo and it definitely feels a little easier to breath knowing I’m not the only one swimming around out here. But to be completely honest, I don’t read a lot of literary fiction that often. I find sometimes if feels like it’s dipping too close to nonfiction. I will definitely look into this book though and feel it out a little more.

        I definitely think we need two lists. One list for books with good chronic illness/disability rep and then the second list for books with accurate mental health representation. I think it will be really good for many readers and it’ll help other readers to broaden their reading horizons on books they don’t often read. It’ll also give others something to think about and to discuss.

        I actually have a review on the book. I gave it two stars. I’ll put my link for the review down below, but at the end of it, I ended up taking (almost) a week to collect my thoughts. The amount of notes I took, it filled three pages front to back because I was hashing so much out. Needless to say, that was the first book in a while that got under my skin and pushed me to a point of being really upset.

        https://chaptermalliumpkin.home.blog/2019/05/28/unexpected-start-up-in-the-city-1-by-kelly-rimmer/

        I truly hope that too Emer, I truly hope that too. I have a middle grade read lined up for Contemporary-a-thin that has a main character who has hearing loss or deaf representation and so far the reviews for that have been pretty good. The book is called Song for a Whale, if you’re interested in it. So I’m eager to get into it as a lot of my in-laws are deaf and have to use special equipment to help with their hearing. And I agree, I think the more of us who come out to talk about our own experiences for these representations then it will definitely help change the future.

        Of course Emer! I’m always here to comment and throw two cents into the pool of all the hard hitting things! And sending you all the love as well dearest friend! ❤️ May today bring you lots of kindness and love!

        Liked by 1 person

        1. I think some people just don’t realise how important it is to have the right sort of illness/disability rep in books. Especially regarding endings that erase disability in favour of a storybook happy ever after. Because people say they read for fun, for light entertainment etc but what they don’t realise is that these problematic narratives will impact their thinking no matter how much they view the book as light and/or disposable fiction. And that’s where critical reading and hard hitting reviews and discussions come into play. I know that my reviews for The Friend Zone, Carve the Mark and Everything, Everything all hit a wide audience of readers on Goodreads (and that has spread even further now that I have my own blog) and though it was hard for me to reveal details about my own life in those reviews (and more so in this discussion) I know that talking honestly has opened a lot of people’s eyes to the problematic rep and how damaging it can be.

          I read your review of Unexpected last night on Goodreads when I went searching for the book. It certainly sounds like it had quite a confused plot line. And that it really didn’t give enough gravitas to the infertility aspect. Infertility is such a delicate subject matter, I know my own infertility is something that I have made peace with but I still would not react kindly to someone treating it in such a flippant manner. But again I noticed that the majority of the other reviews didn’t touch on the carelessness with how the infertility aspect was handled. And this again shows that the majority just don’t understand the importance of authentic rep so it’s up to people like you and me to shed light… And that’s quite unfair sometimes isn’t it. I know I get frustrated when I feel I have to yet again call something out for being problematic. I didn’t ask to have to argue for recognition and validation for my life but seemingly that is quite comes hand in hand with being someone with a chronic illness and invisible disabilities. And I may not be able to live as active a life as I like but that does not mean I’m ever gonna silence my voice. And the book community seems to be the place I can best do that which I find gratifying in some ways. I’ve always struggled with the idea that I’m not making any sort of positive impact in life because due to my chronic illness and diseases I have had to give up working, so having this blog and a voice in the book community has given me some personal validation.

          I get you completely with regards to reading the literary fiction rec; it’s not always the most fun and when we are exhausted enough as it is sometimes the last thing we need is to delve into a chewy book that will remind us too much of our own lives in possibly an upsetting fashion.

          That middle grade rec sounds intriguing. I’ll definitely pop it on my TBR and will keep an eye out for your review once you’ve read it.

          Thanks so much for commenting Autumn. It really means the world to me and as you said, it’s nice to know we aren’t swimming alone out here :))) <333

          Liked by 1 person

          1. I completely agree. But I’m glad there are readers and reviewers out there who take the time to point it out. I think for me, my biggest highlight with influencing people is when I get into discussions about the ACOTAR series by Sarah J. Maas and most of the time I’m in a discussion about Nesta. EVERYONE hates Nesta and the way she acts, but the main thing I never, EVER hear anyone talk about is how traumatized and how much PTSD she’s suffering. A lot of readers are quick to say she’s a horrible sister, this terrible person, and that she should have never been made a character, but I’ve noticed that I’m the only one in a corner screaming “NO! SHE HAS SEVERE PTSD! I KNOW BECAUSE I LIVE WITH IT!” Of course we can’t change everyone’s mind, but I know that my discussion about her has changed a few people and more readers will actively seek me out just to hear my opinion on something like that. And I’m definitely trying to make it a point to read more books with infertility, more books with PTSD/trauma representation, just more books that I know I can speak up about and encourage others to look at. Also, if you have a review of The Friend Zone, send it my way! A dear friend of mine in the book community said I should pick it up because of the infertility rep and I’m definitely eager to read more opinions on it.

            Yeah, Unexpected was definitely a choice. There was so much happening in that book and it was trying to do WAY too much. And to be honest, I hated rating it two stars. There were some good elements to it, but for the majority of it, it felt like I was watching a train wreck in slow motion. I agree, though. Before I read my arc, I looked at some of the reviews and it just wasn’t good, but no one was really talking about the problematic material in the book (and there’s A LOT). And finishing that book, I went back through and reread those other reviews. And still, no one was fully talking about all the problematic material in this book. I wish my critical reading of a brain could have been turned off because I really just wanted a book I could enjoy, but the content was just too bothersome for me not to hash everything out. And yeah, it really does blow that readers like you and I have to be the ones to call out problematic material and tell others that something is inaccurate. But I know the feeling that it’s gratifying that we’re in a community that we can share our voice and people will listen. I think that’s the thing I’m still realizing, there’s other people who are actually listening to me and my voice is reaching others. Before, I didn’t think many people were listening in our community and then one day I noticed. But it’s holds such an impact for readers like you and me because it not just validation, but also means we’re making a difference, no matter how small or big.

            Unfortunately, literary fiction just isn’t my speed. Neither is nonfiction. Which is super strange because I used to read those genres like crazy as a child, but now I’m like, “I don’t want to touch it with a ten foot pole.” Even biographies are super hard for me to read and push through. Even if they’re about people I’m generally interested in, it’s such a struggle.

            It definitely is! I think I’m going to try to read that one first once the Contemporaryathon hits. I figured its a middle grade read and I should be able to knock it out fairly quickly if the reading slump doesn’t hit too hard. So if I can knock it out first, that review will probably go up before the other books I plan to read.

            Of course! I will forever be in the void, commenting on blog posts and shouting about all the things! Haha 😂

            Like

  19. 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

  20. 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

  21. 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

  22. 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

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