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Why We Need More Representation of Chronic Illness in Books

In my bedroom, everywhere I turn, whichever cupboard I open, I find a book. I regularly and with considerable enthusiasm rescue books from the bookshelves at any place that sells them. I lean on books not just for the pure enjoyment of reading but also for some healthy escapism. Since becoming chronically ill, books have become even more crucial. Books have become a magical portal, allowing me to escape the severe, debilitating symptoms that are now my constant reality.

"Since becoming #chronicallyill, books have become even more crucial. Books have become a magical portal allowing me to escape the severe, debilitating symptoms that are now my constant reality." Share on X

Pink background with a girl reading a book she is holding in her hand with text that reads 'Books are a magical portal allowing me an escape from pain and chronic illness'

Pain and illness often confine me behind the same four walls, with a scenery that never changes. But books offer a window offering views of worlds and places, both real and imagined. Books and my imagination allows me to run, walk and move without the fear of falling and being unable to get back up.

"Pain and illness often confine me behind the same four walls, with scenery that never changes. But books offer a window offering views of worlds and places, both real and imagined." Share on X

In his essay, Mirrors, Windows, and Sliding Glass Doors, Rudine Sims Bishop stated that books, as well as being a window offering views of worlds, can also be a mirror. He wrote, “Literature transforms human experience and reflects it back to us, and in that reflection, we can see our own lives and experiences as part of the larger human experience.”

If Books Are A Mirror, They Fail To Reflect The Reality of Living With Chronic Illness

It saddens me that my favourite pastime ignores the thing that affects my life the most. The more time I spend inside books, the more my life feels as fictional as what I’m reading. Because whenever I pick up a book, there is never a mirror, only a void. Whatever I read, I can never see any fragments of my reality reflected on the pages of literature.

"The more time I spend inside books, the more my life feels as fictional as what I'm reading. Because books rarely reflect any fragments of my reality of living with a #chronicillness." Share on X

The more time I spend inside books, the more my life feels as fictional as what I'm reading. Because whenever I pick up a book, there is never a mirror, only a void. Whatever I read, I can never see any fragments of my reality reflected on the pages of literature.

As in the real world, chronic pain and illness remain invisible and ignored in the literature I love to read. Constant, severe and debilitating symptoms don’t besiege the characters in books as I am. Nothing I read involves characters who depend on mobility aids to help them navigate the outside world.

I can never relate to or see myself in the characters represented on the pages of popular fiction. Instead, the main characters, love interests and heroes are everything I am not – healthy, strong, and able-bodied. And so it evokes a feeling of uncertainty about where or even if I belong.

"I can never relate to or see myself in the characters represented on the pages of popular fiction. Instead, the main characters, love interests and heroes are everything I am not – healthy, strong, and able-bodied." Share on X

As I search the bookshelves, no books reflect my experiences of being chronically ill back at me. I can only imagine what it would be like to find a book that reflects my story. I can only imagine reading words on a page that resonates so deeply that it feels like I am reading about my feelings and experiences of living with a chronic illness. Or how it would feel to see chronically ill characters who, like me, feel stuck, unable to move past or grow because of it.

If books did, there would be light and connection to a world that can sometimes be dark and lonely.

Books Representing Chronic Illness Would Give Me Something Familiar to Cling To Against The Tides of Loneliness

A book illuminating the realities of chronic illness would give me something familiar to cling to; a safety raft against the violent waves of solitude. Books that would grant me solidarity, allowing me to relate my experiences and be a witness to a body similar to my own.

"A book illuminating the realities of chronic illness would give me something familiar to cling to; a safety raft against the violent waves of solitude." Share on X

Something that would finally provide me with validation that my pain and experiences are real. Something I can wave around as evidence that what I’m experiencing is not fictitious or all in my head. If such books existed, I imagine the inked words rising from the pages like a pair of arms embracing me, reminding me I’m not alone.

"If representations of chronic illness did exist in books, I imagine the inked words rising from the pages like a pair of arms embracing me, reminding me I'm not alone." Share on X

A picture of a girl, on her right lies a pile of book, and to the left two books with a pair of glasses and a cup of tea on top. Girl is reading a book. Lies above are the words 'We read to know we're not alone' by William Nicholson

As I reflect on my childhood, puzzlement was the most overwhelming feeling I experienced when I first exhibited strange symptoms. I didn’t know anything about chronic pain or illness. I knew nothing about the diagnosis the doctors would eventually uncover. Usually, when I encountered a problem, I ran to books to try to make sense of it. But, this was a complication for which books had no answers. It only left me feeling confused, lost in the cold and with no map to help guide my way.

"Usually, when I encountered a problem, I ran to books to try to make sense of it. But, #chronicillness was a complication for which books had no answers." Share on X

Why We Need More Representation of Chronic Illness in Books

It was a scary and lonely time. But if there had been more representation of chronic illness in books, it might have made everything less frightening. If there were fictional characters I could identify with, I could see life with a chronic illness differently. And perhaps discover new ways to cope with the many illness-related obstacles. But more importantly, seeing characters thriving despite health challenges would give me hope when there’s often none to see.

"But more importantly, seeing characters thriving despite health challenges would give me hope when there's often none to see." Share on X

I hate sharing my life with chronic illness. It is ceaseless, painful and terrifying, But still, I have been subject to suggestions that I am faking. Or at least exaggerating my illness for attention.

But chronic illness, especially those illnesses and disabilities that are invisible, remains unseen in books and popular culture. Still, illness and disability are taboo subjects, hidden in the dark, ignored and unconsidered.

imagine the inked words rising from the pages like a pair of arms embracing me, reminding me I’m not alone.

Representation Can Improve Understanding of Experiences Beyond That of Our Own

But books are empathetic, connecting us to experiences beyond our own and opening our eyes to obstacles others face. If there were authentic representations of chronic illness in fiction, perhaps those not facing such issues would be more aware and understanding of those who do. It will prevent others from judging us when we have to cancel at the last minute. It will help people not to judge us for needing certain accomodations despite being young and looking healthy. If more stories existed featuring main protagonists living with chronic illnesses, it would help validate our existence and help us feel seen and a part of society.

"If there were authentic representations of chronic illness in fiction, perhaps those not facing such issues would be more aware and understanding of those who do." Share on X

Although the representation of chronic illness in literature is lacking, it isn’t to say that there isn’t any. With the emergence of ‘Sick-Lit,’ a new genre of young adult fiction features characters living with illness. Characters who live with chronic illness alongside the added complications of adolescence and growing up. My younger self could only crave the kind of solace, affirmation and community seeing my experiences represented in something tangible.

Seeing Chronic Illness In Books Would Give Those Experiencing It Something to Relate To

As I read the pages of sick-lit, I felt its words could have been about my own life. I could relate to the suffocating loneliness and isolation its characters often expressed through being sick. But, still, my older self felt disconnected from the story and its representation of chronic illness. Because as a 30-something-year-old, I am older than those characters represented in sick-lit, usually angsty teens or young adults. The problems and complications I face from being chronically sick are very different and rarely discussed in popular literature.

Chronic Illness Needs More Representation in Books

It’s encouraging that we are starting to see the representation of chronic illness in books; it still isn’t enough. Older readers, like myself, deserve to see themselves in the characters. Books with characters struggling with chronic pain and illness whilst also grappling with all the responsibilities of adulthood.

I want to read about characters who struggle with losing their independence. Characters who, like me, battle with insecurity because of the physical effects it has on their body and their life. I want to cheer on characters who feel worthless and unattractive. And who often fear that they will never find love because of something they think makes them a burden.

I would love nothing more than to open a book to find a mirror when I read. A mirror that reflects my experiences and feelings of living with a chronic illness. Because no matter who you are, the bookshelf and the literary world should be a place for everyone. The books aligned on our bookshelves should be as diverse as the world we live in and should represent everyone. But until there is more representation of chronic illness in books, I will have to continue reading for escapism.

"Because no matter who you are, the bookshelf and the literary world should be a place for everyone. The books aligned on our bookshelves should be as diverse as the world we live in." Share on X

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists. Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

Today’s prompt reads as follows:

Book report…What’s your favourite book and how can you tie it to your health or life?

For someone who is an avid reader, it is very difficult to choose one favourite book! I am regularly discovering new authors who has written amazing and enjoyable reads that are both thought-provoking and compelling. However, what does link many of my favourite authors and their books are the lack of characters who I am able to relate to in relation to life with a neurological condition.

Previously, I have written a post regarding the lack of credible and authentic portrayals of neurological conditions and other chronic illnesses within television. Unfortunately, the same could be said regarding fiction, as there is a lack of novels featuring accurate representations of life with a neurological condition, or even chronic illnesses. Perhaps, a reason for this is people want to read books for escapism, instead of reading a book about the often gritty realism of what it is to live with a long-term health condition, or perhaps it is the preference for a story that encompasses the hope of recovery and which depicts triumph over adversity.

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One book that I recently read and thoroughly enjoyed, however, did portray one character’s battle with a neurological condition. The condition portrayed in the book, was not in any way similar to that of my own condition but I did relate to the character’s frustration and certain parts of her journey depicted in the story. The book is by a fantastic author named Lisa Genova. Lisa herself has a PhD in Neuroscience and could be argued the reason why Lisa is able to intertwine realistic and accurate portrayals of neurological conditions, with not just accurate information regarding the condition itself but also the emotional toll that it can have on both the patient and caregivers. The book that I particularly enjoyed of hers is ‘Left Neglected‘ a story of a high-powered career woman Sarah Nickerson who is left with a brain injury after a car accident. The injury is to the right hemisphere of her brain, which as a result leaves her with a ‘left neglect’ or ‘hemispatial neglect’, in which the brain forgets and ignores information on the left side of her body, and also the left side of her entire world. For example, after the accident, when her husband is stood by the left side of her, as her brain is unable to interpret or process the information Sarah is unable to see him; Sarah is also unable to feel anything on the left side of her body and therefore has to undergo physiotherapy in the attempt to learn how to walk and generally recover from the traumatic brain injury.

Obviously, there are many differences between the neurological condition that I live with and that of the character in the novel. For instance, the condition in which I live with is not a result of a traumatic brain injury, and in addition mine is one in which is life-long and no chance of recovery, where as in the novel through hard-work, determination and the aid of physiotherapy, recovery can be a possibility. The symptoms of the conditions are also extremely different – in the novel, the character Sarah has to learn and re-teach her brain to acknowledge the left side of the world and her body. In my everyday life, however I have to contend with constant dizziness, vertigo, trembling and weakness in legs as well as battling fatigue and nausea.

However, as much as there are extreme differences between my situation and that of the main protagonist in the novel, I did find myself relating to the book and that of the experiences of Sarah. As a high-powered career woman, Sarah was not the type of person to sit around, and therefore the novel excellently explore the frustration of suddenly being unable to do the simplest task for yourself. On the days where the severity of the weakness and trembling in the leg leaves me unable to get out of bed and so I feel the same frustrations of not just being stuck where I am and unable to do anything for myself, but also the frustration of not being able to do the things you love. Furthermore, I could really relate to the frustrations of the lack of progress in physiotherapy and the temptation to push yourself before you and your body are ready, leaving to a great many accidents which I have also experienced during my time in physiotherapy and whilst at home. Very often, when our bodies are at our weakest we adopt a “win” attitude. By which I mean, we attempt to defy the weaknesses and challenges of our conditions and attempt to ‘run before we can walk’. And by reading the book, it seems that both myself and Sarah have learnt that instead of trying to ‘win’ and suffering setbacks in the process, such as suffering falls and other accidents, we should instead accept the limitations that our conditions poses and adjust our lives accordingly.

The one thing that I loved and really took away from the book is how that despite limitations and various disabilities does not mean the end of doing what we love; that we can find different ways of doing things or taking part in activities which we never thought possible. In the book, for example Sarah goes on a vacation with her family and before the accident she loved snowboarding on the slopes where they stay. It’s at this point that she imagines that she will never be able to snowboard again, however after visiting a shop designed for those with disabilities she found that she may not be able to do like she did before the accident but there are ways in which she can still participate. It’s this lesson that I have learnt for myself, and one which I am constantly learning as I am finding new ways of adjusting to the challenges that my condition presents.