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.
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!