The first feeling I had as I stared at the confirmation email that landed in my inbox was excitement. I felt exhilarated at the prospect of escaping the gilded cage that illness had created for me. I was excited by the promise of a change of scenery from this gilded cage my home has become. But it also came with trepidation. Why? Because, unfortunately, I’m unable to escape my disabled body. I can’t take a holiday from this illness that controls much of my life. Instead, I have to make room and take them with me. Because wherever I am, the symptoms will be, too. Where I am is irrelevant; pain and all the other symptoms will exist no matter where I am. So how can I feel joy about travelling while I’m drowning in a torrent of pain and besieged by a myriad of other horrible symptoms?
None of my days are symptom-free. Every day, I experience crushing waves of pain, weakness, fatigue or dizziness, waves that drag me deep into the abyss. Some days, I experience two or three severe symptoms; on the worst days, I come up against all of them. So, much of every day, I make decisions explicitly designed to avoid physical pain. I spend every day doing everything in my power to prevent triggering any of the symptoms that make my life increasingly oppressive.
Glimmers that once sparked joy are now pushed into the shade.
So, I decline social invitations, cancel long-awaited plans and wave goodbye to passions and ambitions that once nourished my soul. But by doing so, I’ve paid a hefty toll. As the symptoms play a more prominent role in my life, my world becomes smaller and more isolated. The only company I seem to keep are the symptoms that forever haunt me. I often stare outside, wishing to be part of the world beyond my window. The glimmers that once sparked joy suddenly pushed into the shade, shrouded in darkness that light cannot reach. Because of this, I, like so many others living with a chronic illness, often experience depression, a byproduct of the happy, joyous moments that sickness has stolen from me.
So, saying yes to a marathon visit to bookstores, a trip to my favourite shopping haunt, a night out at the theatre, or a voyage on a cruise ship is a way of reclaiming some of the stolen joy illness snatches away. I do so despite knowing the heavy price to pay for these small snippets of normality: the rigidity and incandescent pain that rages through my legs, the all-consuming fatigue that overwhelms my entire body, and the dizziness and vertigo that refuses to relent, forcing me to lie down gripping at sheets as everything around me spins. I want good days and to feel alive rather than just surviving. So, I would opt to be in pain and feel the full force of my symptoms rather than be depressed.
But as the symptoms became more intense and severe, the anxiety about going at all increased. I didn’t want to go, only to have the cruise ruined by my erratic and unpredictable body. Was it even possible to postpone until I felt stronger and better prepared? Or at least until the symptoms were not so out of control and were no longer making my life a living nightmare.
For me, a cure or getting better is a wish only a Fairy Godmother could grant. But my life is no fairytale. It might not even be a flare, but the start of my symptoms worsening again. Right now, it might be the best it gets. Whatever the case, I cannot put my life or plans on hold, however much I would like to.
My mind constantly raced with thoughts of what if—catastrophic thoughts of what would happen if I did go and thoughts of what if I didn’t. But ‘what’ and ‘if’ are as nonthreatening and insipid as two words can be. But together, side-by-side, they have the power to haunt you with anxiety or regrets. As much as I feared going, I also feared that I would always regret it if I didn’t go. As unwell and anxious as I felt, what if I had gone would forever haunt me.
My most treasured memories were not pain or symptom-free
But I did it. After a whole lot of tears, anxiety attacks, as well as pep talks and words of encouragement, I did it. Despite feeling weak, defeated and broken by both my physical symptoms and mental health, I amazed myself by achieving what I thought was unthinkable – stepping on board, passport in hand, ready to cruise.
Reflecting on this cruise and those preceding it made me realise something. Some of the best experiences and my happiest memories were not pain— or symptom-free.
The pain and other symptoms, as severe as they were, are not what I remember most from the trips I’ve loved while cruising. What I remember most is being in awe of the majestic scenery as I stood in the fjords of Norway. I look back now on not the amount of pain I was in but standing on a ferry, witnessing the beauty and quaintness of Portofino as it came into view. Only the joy and excitement of seeing a pod of dolphins as they jumped alongside the ship remain, not the days spent feeling sick in the cabin. What I remember is not the crushing fatigue but walking the pretty streets of Sorrento. I dwell on not the nights spent in the cabin in pain but the lovely, joyful memories of nights eating fantastic food and sipping delicious cocktails.
Symptoms lingered, but joy lingered, too.
I look at pictures of myself while travelling, and I’m glowing—beaming in a way I haven’t seen myself in a long time. For the first time in a long time, it felt like I was living and not just existing. Illness and its vast array of symptoms have long ago created a gilded cage, and for me, books were its key. Reading allows me to escape the cage and experience worlds and places, both real and imagined. But as I stood on the balcony, watching the glistening blue waves of the ocean, my world no longer felt small and secular. My world suddenly expanded, and I was a part of it, experiencing it for myself instead of observing it from a tower, like Rapunzel or reading about it from a book.
But all good things must come to an end. But, for each excursion and every accomplishment came a physical cost. I swallowed the maximum dose of painkillers while crossing my fingers that it would delay the inevitable assault of pain. I diligently took the correct dose of my other pills and hoped they would ease the nausea and dizziness advancing toward me. But, living with a chronic illness, I often have to prepare to worsen my symptoms for a slice of normality. I must pay the price to take part in everyday things everybody else takes for granted. But even sometime later, symptoms lingered, pushing my body into a debilitating flare. But joy and exhilaration lingered, too – almost making the pain worth it.
“I’m Not Faking Being Sick; I’m Faking Being Well.”
Despite being sick, I’m never fortunate enough to receive flowers, gifts or cards. I don’t get anything; instead, I draw eye rolls as people become exasperated by my ill health. Rather than sympathy, people are accusing me of faking being sick for attention. Or using it as an excuse not to work and instead laze around the house all day, killing time. I never receive love or sympathy. Instead, I get disbelieving shakes of the head or glares when getting out of the car in a disabled bay. But I get no compassion. Instead, I’m the beneficiary of unsolicited advice; I should get out more for fresh air or to be more positive. But never hugs or presents.
Smiling, Looking Happy and Carefree…To Others, I Must Be Faking
It’s the reality when people cannot see your pain or the other symptoms accompanying chronic illness. They assume it doesn’t exist or that you’re exaggerating it to be much worse than it is. When I’m out, I’m smiling, make-up done, wearing clothes that make me look and feel good, alongside my colourful crutch. To them, I must be faking; someone genuinely sick wouldn’t be smiling, looking happy and carefree. A woman who is ill and disabled wouldn’t wear make-up or care about looking fashionable. To them, I must be faking, desperately seeking attention, wanting to stand out with my bright, fun and colourful crutch.
Yes, I like that it is aesthetically pleasing; I love that it looks fun and fashionable. But it’s my choice of crutch, not because I want attention. But because it’s more comfortable than anything I’ve used before. I felt miserable using the uncomfortable, grey, bulky crutch handed to me at the hospital. It caused pain and made me look and feel disabled. It feels that this illness stole my mobility and took my youth, femininity, love of colour and fashion.
But this crutch has not only helped with my mobility and reduced my pain but has also become an extension of my personality. They have become stylish accessories that I can coordinate with my outfits and a source of joy. They’ve gifted me new confidence in using them. More importantly, it has returned to me a part of myself that I thought I had lost.
But I’m Not Faking Being Sick; I’m Faking Being Well
People think I’m faking. And I am. But I’m not faking being sick; I’m faking being well. Nobody witnesses it, but I see evidence of my sickness daily. The remnants of illness echo everywhere around the house. It’s found in the piles of clothes left unwashed and unironed, the chores left unfinished, my mobility aids scattered around, and the empty pill packets discarded on my bedside table. My immediate surroundings are evidence of my sickness, as is my body. The dark, purply bruises under my eyes, my ashen complexion, and the cuts and bruises that decorate my body.
But still, I’m continuously accused of faking or exaggerating my symptoms. But the truth is, I’m more likely to downplay the severity of my symptoms than to embellish them. The symptoms I live with may be invisible, but they are all too visible to me. Nobody can see, but I feel the symptoms constantly thrum through my body, causing persistent pain and discomfort. Those who judge, accusing me of faking, never know as I spend most of each day lying anywhere I can find.
Much of that time, I’m lying with my eyes closed as I grapple with the pain and the other symptoms that are hell-bent on making life unbearable. But somehow, people think that I’m stuck at home by choice. There’s an idea that all I do all day is lie around in my pyjamas watching TV. A duvet day, every day, by choice, because to them, I’m lazy.
Like Ariel, I Wish I Could Be Part of Your (Healthy) World
But I’m not stuck at home all day by choice. It’s because that is the only option. Being at home every day is incredibly dull and depressing; my single experience is with my chronic illness. The world moves on, but still, I remain trapped, my body tethered to the confines of my home, wishing like Ariel that I could be part of the world outside of my prison.
Every day, my head is full of wants and dreams, everything I yearn for and want to achieve. But all my desires and dreams are impossible to make reality. Because again and again, my body rebels against me, stopping me from living. I don’t choose to stay home every day; my body demands it. If I don’t conform to its demands, my body throws a tantrum to rival that of the naughtiest toddler. Living with chronic illness, FOMO isn’t the fear of missing out but rather the feeling of missing out. Grief constantly reappears as, time and time again, my body rebels, forcing me to miss out on joyous occasions I desperately wanted to attend.
Accusations of Faking My Illness Is Not Only Limited To IRL
But it is not only in my real life that I have encountered allegations of faking my chronic illness. Horrible, vicious messages accusing me of faking being sick for attention or likes sneak into my DMs. Or even appear as anonymous comments on my blog by nameless, faceless trolls.
Writing about my experiences and sharing details of my life with chronic illness, some accuse me of talking too much about it. But some trolls take umbrage of my sporadic personal tweets that delve into life with chronic illness. Or they take issue that I don’t disclose everything about my life with chronic illness. As if, by not revealing everything about life with my health condition, then I can’t be living with it. Their venom, directed at me and my writing, calls into question the lack of photographs of myself looking ill. They question the lack of photos of the injuries I have obtained because of my symptoms. I feel like I’m on trial; the words I carefully compose and share on social media are evidence of my guilt or innocence of faking or exaggerating my life with chronic illness.
But if I shared my reality of how bad I feel, every post would be a self-absorbed tale of woe. Who wants to constantly read details of how unwell I am or how miserable I feel? I know that’s not something I want to write about and share. It is difficult enough to endure the worst of times at the hands of chronic illness. But having to relive it all over again on social media only exacerbates the trauma. So, I don’t share; instead, I become quiet, my socials inactive as my time becomes preoccupied with surviving the flare.
The Last Thing I Have the Energy For When I’m Unwell Is To Constantly Tweet About It!
I have little energy to do anything besides lying, staying in bed, and feeling terrible. The exhaustion penetrating my body makes me too tired to watch television, talk to anyone, or even move. I certainly do not possess the energy to lift my phone from its resting place to document how bad I feel for posterity on social media. Or, after a fall, my priority is getting myself to a safe space, tending to my injuries, ensuring they aren’t severe, and not taking a photograph of them to share online to legitimise my suffering.
I hesitate as my cursor hovers over the send button, unsure whether to catapult my innermost thoughts into cyberspace. I ask myself if I can or should reveal the private, intimate details of my thoughts, body, and life with chronic illness. But I do, not for attention or likes on social media, but because I remember the crippling loneliness I felt for years, living with mysterious and puzzling symptoms I had no answer for. If sharing my story and giving voice to this experience allows even one person not to feel that profound loneliness, it would give purpose to everything I have and continue to go through.
I have received many messages from people who have read my words or followed me on social media, saying they feel less alone because of my relatable descriptions of living with chronic illness. Every like I receive is not because someone likes my writing but because they understand and can sadly relate to my terrifying predicaments arising from my diagnosis. So, rather than wanting likes on social media, I’d prefer to have none.
Living With Chronic Illness Makes Me Feel Insecure and Embarrassed; Attention Is The Last Thing I Want
My social media feed is often a highlight reel of my life filled with smiles, laughter and a reflection of my likes and personality. This a testament to the moments I’m feeling joy and positivity and well enough to post. I’m happy to share such times because they reflect the time of my life when I felt normal and not the sick girl I often am.
It hurts more than I can say that people think I’m faking or exaggerating my illness for attention or likes. Especially so when the said illness is always very present, evident in my life, ready to attack and ruin the here and now at its prerogative. It is apparent to me and those closest to me that I’m not faking being sick but being well. The symptoms affecting my mobility and balance are now all too visible to everyone that something is wrong with me, making me feel insecure and self-conscious. Because of this, I shy away from drawing attention to myself, preferring to stay in the background. Attention is the last thing I want, despite the accusations often directed at me.
Because when you become chronically ill, the only attention you do come by is unwarranted and intrusive. I can physically feel stares boring into my back while my legs crumple beneath me, my crutch feebly maintaining my balance and me upright. Along with the stares, I hear not-very-whispered whispers as people suddenly look down after my eyes unexpectedly catch them staring at me. Or, strangers approach me, asking me intrusive questions about why I’m using a crutch and what is wrong with me, as if my health were a subject of debate like the weather.
I’m Not Faking Being Sick; I Spend All My Time Faking Being Well
However, I’m often met with incredulous looks when I open up about my health condition. As if they think I’m faking it because I look fine, because of my faked healthy glow. It’s a cruel irony that the better I’ve managed my illness and the more adept I’ve become at hiding the signs, the harder it is for others to recognise it.
Because despite what you may believe, I’m not faking being sick. I’m spending all my time faking being well.
In my last blog post, I shared how I often feel invisible when reading books because I can never find authentic portrayals of chronic illness in fiction. In this post, I share 6 beautiful novels about chronic illness with authentic and relatable chronically ill characters.
The books surrounding me offer opportunities as I lie on my bed, tethered to it by chronic illness. Every book is a magical passport granting freedom and the possibility to escape the real world for a moment. I can open a book, and chronic illness and all its symptoms and complications seemingly dissipate from existence. Books allow me to be and do anything I want. Living inside books is the only place I can be free from the debilitating symptoms of chronic illness.
I love reading books, but sometimes they make me feel lonely. And the more my life seems strange compared to the characters that live inside books. The more time I escape inside the pages of books and away from my reality, the more its magic dissipates. Because books, particularly fiction, ignore the thing that affects my life the most – chronic illness.
I’ve often felt excitement upon discovering a book depicting life with a chronic illness. But that spark of excitement is fleeting as I often feel frustrated after turning the last page. Finding books representing chronic illness is incredibly hard, and authentic representations are even rarer. Because usually, books that do feature chronically ill characters are inaccurate, lack nuance, or are entirely ableist in their portrayal.
There is a long way to go before we have authentic, chronically ill characters in popular fiction. But that’s not to say there aren’t authors who are getting it right. Some writers are doing an excellent job of making the literary world a little more inclusive. Below are my recommendations for novels about chronic illness that became mirrors of my thoughts and experiences of living with ill health.
Having been diagnosed with severe endometriosis in her twenties, she believes being self-reliant is the only way to survive her painful and debilitating illness. Between doctors’ appointments and in and out of hospitals, Laura confronts single parenting after her divorce, leading a life her teenage self would be in awe of.
After many years of enduring pain and the feeling of never being understood, Laura navigates her sexuality and unrecognised chronic condition the best she can. And forced to question her beliefs as she learns to find a certain peace, even in an impossible situation. Figure skating has been her salvation, as do writing and her dream of escaping Norway and moving to NYC.
My Thoughts:
It’s funny; I still struggle to discuss it despite years of living with chronic pain. There don’t seem to be words to describe the pain adequately or its effect on my life. But somehow, Havelin has eloquently articulated my and many others’ chronic pain experience. I resonated so deeply with the words on the page that they mirrored my thoughts and feelings. I underlined passages that struck a chord and that I felt reflected my very own journey of living with ill health.
The reverse chronological narrative brilliantly illustrates the endurance of chronic pain. It also demonstrates how pain and illness can determine the circumstances of people like Laura forced to endure it. And it is why Please Read This Leaflet Carefully is one of the best novels about chronic illness and chronic pain.
To read my full thoughts about Please Read This Leaflet Carefully; you can read my full review here.
ChloeBrown is a chronically ill computer geekwith a goal, a plan and a list. After almost – but not quite – dying, she’s come up with a list of directives to help her ‘Get a Life’:
Enjoy a drunken night out
Ride a motorbike
Go camping
Have meaningless but thoroughly enjoyable sex
Travel the world with nothing but hand luggage
And…do something bad
But it’s not easy being wrong, even when you’ve written step-by-step guidelines. Chloe needs a teacher, and she knows just the man for the job: Redford ‘Red’ Morgan.
With tattoos and a motorbike, Red is the perfect helper in her mission to rebel, but as they spend more timetogether, Chloe realises there’s muchmore to him than his tough exterior implies. Soon she’s left wanting more from him than she ever expected…maybe there’s more to his life than her list ever imagined?
My Thoughts:
Unfortunately, books rarely bestow us with authentic, chronically ill heroines. Until Chloe Brown, that is! I love that illness surfaces a lot in the book – because chronic illness influences most, sometimes even all, aspects of your life. My life looks like Chloe’s, from the many mobility aids strewn about the place to my inconsistent schedule because of inevitable flare-ups. Every detail in the book feels incredibly familiar as it mirrors my reality of living with a chronic illness. I also love Chloe and see her as a role model. Throughout the book, Chloe talks a lot about her condition and disability, but without it being the whole of her identity. It is admirable that she lives a happy life and thrives without finding a cure or overcoming her illness.
But, more than that, it is hopeful and uplifting as Chloe finds acceptance and love with the male protagonist, Red. Throughout the book, Chloe fears rejection from friends and potential partners because of her disability. Unfortunately, I have experienced this, but Red assures her she isn’t a burden and she shouldn’t accept people treating her as such. In these conversations, it felt like the author, Hibbert, talked directly to me and addressed my insecurities. In all, it is a book that gives us hope we, too, can find love and romance even with a chronic illness and disability.
Meet Alex. She has a wonderful fiancé, a job she thrives in, and a best friend she’s known since childhood.Life’s not perfect, but it’s pretty fantastic. Until a shock diagnosis suddenly throws everything off course.
But Alex has never been one to back down from a fight. Now single and unemployed, she packs up and moves from her Glasgowhometown to vibrant Birmingham for a fresh start. In a new job, in a new city, she’s learning what’s important in life all over again.
Friendship, fun and romance lie just around the corner. But can Alex leave her way and learn to take a moment and live?
My Thoughts:
Described purely romantic fiction, I would argue that it is so much more than that. It is a thought-provoking, heartfelt and life-affirming novel about chronic illness and its impact on every facet of a person’s life and identity. But, more than that, I felt seen and represented in a book in a way I never had before. Unlike the main character Alex, I do not live with MS, myself but the symptoms I live with overlap. Therefore, reading Alex’s experiences and feelings was like reading my own.
Take A Moment gives a brilliant insight into the experience of becoming chronically ill. The sudden loss of independence, suddenly feeling vulnerable in your own body, the concern about being unreliable, people treating you differently, and facing professional barriers. Too often, the focus on us becomes what we can no longer do instead of what we can. The book highlights the strengths and insight you gain when living with a chronic illness. But, it also emphasises the importance of having supportive people around you – friends, family or colleagues. I hope this raises awareness and makes people more empathetic towards those with invisible conditions.
At times, the words jumping from the pages took me back to the start of my chronic illness journey and the time I received my diagnosis. But despite all this, the book isn’t maudlin or depressing, it emphasises the challenges, yes, but it’s also incredibly positive. It is a reminder that a chronic illness diagnosis does not mean the end but can be the start of something better. And a book that also makes you appreciate the people that are always there; and who believe in you when you don’t believe in yourself.
Best friends Isla and Sophie made each other a promise long ago to never let life pass them by. Years later, Isla is in love, living abroad and fulfilling her dreams. But for Sophie, things haven’t turned out how she was expecting, and she hasn’t achieved anything she and Isla discussed.
And then, in one sudden moment, life irrevocably changes for both women.
Isla and Sophie have hard decisions, but above all else, they must face the uncertainty ahead. Only when they realise this is easier together, two friends standing side by side, can each woman embrace whatever the future holds for them.
My Thoughts:
Chronic illness does not take centre stage in The Little Pieces of You and Me. However, some descriptions were so visceral and resonated so much that I thought the book was still worth mentioning.
“Her body, something she’d always taken for granted, could no longer be counted on to behave predictably. She’d almost stopped seeing it as part of her, and instead looked on it as an adversary, biding its time preparing to trip her up.”
Vanessa Greene, The Little Pieces of You and Me
After reading this passage, I realised I had tears in my eyes. As someone with a neurological condition, like one of the characters in the book, this sentence hit close to home. It felt like I was reading how I see my body on the page, and for the first time, it felt like someone understood me.
But most of all, the book is about love and friendship. The strong friendship between Isla and Sophie was heartfelt, and their connection came alive from the pages. Both characters encounter challenges but weave seamlessly through the book with great sensitivity and compassion. I love how both characters were resilient enough on their own but were even stronger when together. The book teaches us that we can often know precisely what we want and can easily list them. But then suddenly, life can change, ct, the one thing that makes you happiest was never on our list. A book that is well-worth reading if needing something uplifting and thought-provoking.
As a primary school teacher, Ava Lam is familiar with the ‘buddy bench,’ a rainbow-painted bench where sad or lonely children can sit to show they need a friend.
But are buddy benches just for kids? Ava might have assumed so – until she finds herself sobbing her heart on a park bench, and a kind stranger sits beside her.
The stranger, Dr Sam Stone, has a house and an impressive job, and he’s even training for a marathon – all things that have become painfully out of reach for Ava in her new and scary circumstances. But whilst Sam appears to have everything figured out, he needs a sympathetic ear just as much as she does.
Is this encounter a one-off, or could the ‘buddy bench’ begin to represent a source of comfort and support that will become precious to them both?
My Thoughts:
Again, this book seems like a typical romantic read for the regular chick-lit audience but packs much more of an emotional punch. The book does not shy away from sharing the emotional and physical challenges of living with a chronic illness. It gave a brilliant insight into the reality of invisible illnesses like ME, which the book shines a light on. The dismissal of symptoms from medical professionals and the lack of understanding from family and friends all hit so close to home, as I, too, have experienced this.
The author has accurately portrayed so many elements of living with an invisible illness that I can only hope it will raise awareness among the wider public. But like, with like all of the books I have mentioned, the story does not dwell on the negatives. It is a positive and uplifting story about how it is possible to rebuild your life after an illness has suddenly shattered it. The idea of the buddy bench to help build connections with others is such a charming and unique idea that you begin to wish one were in your area!
Sam and Sadie meet in a hospital in 1987. Sadie is visiting her sister; Sam is recovering from a car crash. The days and months are long there, but playing together brings joy, escape, fierce competition – and a special friendship. Then, that time is over too soon, and they must return to their everyday lives.
When the pair spot each other eight years later in a crowded train station, they are catapulted back to that moment. The spark is immediate, and together they work on what they love – creating virtual worlds in the digital realm that eludes them in their real lives. Their collaborations make them superstars.
This is the story of the perfect worlds Sam and Sadie build, their imperfect world and the thing that comes after success: Money. Fame. Duplicity. Tragedy.
My Thoughts:
I was interested to read this book because of the glowing reviews I read online. I’m not a fan of video games, which is the book’s central theme. I was, however, interested in how it would deal with other main themes such as disability, chronic pain and chronic illness. As it turned out, I completely fell in love with the book, its characters and even the world of video games! The book is one of the most comprehensive portrayals of chronic pain I have ever read. Sam’s pain, disability and medical trauma underlie the book, shaping who he is, his relationships and how he functions in the world. There were many poignant quotes throughout the book, but one that stood out was:
“Sam was scared and ashamed because he felt as if he had no control over his body, no understanding of what was causing the pain and this, no means to ameliorate it.”
Gabrielle Zevin, Tomorrow, and Tomorrow, and Tomorrow
One of the most relatable aspects of Zevin’s depiction of Sam’s disability is how it dictates his life. I could feel it as much as he does, resonating with my experiences. Just as Sam can never forget he’s in pain, neither can we, as voyeurs of his experiences. It resonates as someone living with chronic pain; it is a part of my life I can never forget, just like Sam. His only reprieve, however, comes from playing video games. When the book immerses us in the world of video games, we also go through a reprieve from Sam’s pain. He goes on to explain:
“Sometimes, I would be in so much pain. The only thing that kept me from wanting to die was the fact that I could leave my body and be in a body that worked perfectly for a while.”
Gabrielle Zevin, Tomorrow, and Tomorrow, and Tomorrow
Although I don’t play video games, I still resonated with the need to escape from chronic pain. I find distraction and solace in books; I love that I can be anyone else and be free from pain and illness, if only for a short while.
Although the book deals with several tragedies, I found Sam’s arc hopeful. It is a story that shows us that Sam can still live, succeed and eventually thrive despite it all.
As a confessed bookworm, I read a lot of books! You will rarely see me without a book in my hand. But it is rare for me to find a book with a character like me living with a chronic illness; however, as this post has shown, seeing more novels about chronic illness on our bookshelves is encouraging.
Any other novels about chronic illness I might have missed?
Have you read any great novels about chronic illness? What have been your favourites? Let me know; I always love learning about new books and authors I may not have found on my own!
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
‘I’m fine.’ Two small, simple words I speak no matter what when asked how I am. But it’s also an extremely misleading answer, if not an outright lie. Because in reality, I am never fine. I never feel fine; my chronic illness’s symptoms ensure that. Therefore, I’m fine is a lie that chronic illness makes me tell daily.
I frequently encounter some variation of ‘How are you?’. It is a question I hear every day from all different types of people; friends, family, acquaintances, and even the occasional stranger. For most people, it is an easy question to answer. But for me, it makes me panic as I struggle to find the words to respond. I don’t want to feel like a misfit or a medical curiosity. I don’t want my illness to supplant who I am as a person. So it’s easier to reply with a frank, non-descript “I’m fine.”
But that one straightforward question triggers so much internal conflict. I don’t want to lie about how I am. But if I’m having one of my rare better days, I don’t want that one good day to give the mistaken impression that I’m improving or “cured.” Not because I want attention or sympathy, but because I’m only too aware of how many people living with invisible, chronic illnesses struggle with being taken seriously or believed. I don’t want my response to a straightforward question to reinforce any unfavourable generalisations.
On the other hand, when asked how I am on one of my many worst days, I don’t want pity. Nor do I want to be seen as a bore, as someone who only talks about their illness.
That’s why I, more often than not, may respond with a simple ‘I’m fine.’
It Takes on A Different Meaning When Living With Chronic Illness
Many symptoms that I live with: the pain, weakness, and dizziness are constant, affecting every second of my life. Other symptoms – the falls, the visual disturbances, and vertigo that sends my entire world in a spin are frequent visitors that appear much more regularly than I would like. Because of this, I’m never fine; I never feel fine and haven’t for a long time. I’m surprised that the word is still in my vocabulary.
What ‘fine’ means is that I’m never symptom-free; every day, I struggle with the knowledge that it might be the case for the rest of my life. It means I constantly live in survival mode, existing, not living, and never being able to leave it. It means that I’m fighting to maintain a positive, upbeat demeanour as much as possible, but there are moments every day when it feels too damn hard. It’s a general term for I feel like death, but I have still exerted myself to get up and dressed to go somewhere that is not within the same four walls I usually inhabit.
An I’m fine, and a smile masks the exhaustion, hopelessness and heartbreak. All this constantly pursues me, leaving me unable to escape the clutches of chronic illness. It may mean that although I wear a smile, I’m trying to make it through the day without crying. It also means I’m in tremendous pain, but I’ve become accustomed to hiding it.
I reply, ‘I’m fine,’ despite my legs shaking beneath me. The constant weakness makes them contort as I fear they will crumple any second, leaving me self-conscious once again as I lie on the ground below. Still, I say, ‘I’m fine,’ despite the ongoing grief I battle, being constantly sick and having a body that keeps redefining itself.
Sometimes, it’s easier to pretend I am OK than to discuss chronic illness and its effect on me and my life. Despite much research and learning about the disorder that affects me considerably, the brain continues to be an enigma.
Trying to get others to understand my invisible chronic illness and how it impacts my life is mission impossible. But so much of the disorder I live with is shrouded in mystery, the unknowns heavily outweighing the knowns. I have no idea why the symptoms affect me as they do or why they seem to be set off by particular triggers. If I cannot understand it, how could I ever explain it to someone else to make them grasp what I go through? So, it seems easier to pretend I’m fine and put it off completely.
It isn’t easy to find the words to convey just how severe and debilitating the symptoms are. Or the struggle I endure every day to withstand even another second of life with pain and illness.
I’m Fine: A Lie Chronic Illness Makes Me Tell
But chronic illness is ever-present in my life, snatching away my vitality, health and mobility. It steals time, events and moments. It’s easy to let something ever-present hijack every thought and conversation. But, stating that I’m OK even when I’m anything but allows me to focus on things that make me forget my life with chronic illness, even for a short time. Because sometimes I want a break from having to talk about it. I would rather talk about something, anything else.
I’m bored of chronic illness, so I’m sure others are sick of hearing about it too. Frankly, complaining about it never makes me feel better; if anything, it makes me feel worse. But most of all, I use it because I constantly feel weak, forced to confess that I’m still sick and not coping well yet again. My solution, therefore, is to keep it to myself. I don’t want others to see me as someone who is constantly unhappy or that person who complains all the time.
I like to think of myself as someone honest and authentic. But often, when I say ‘I’m fine,’ it is a lie that chronic illness makes me tell. Because, usually, fine does not always mean fine.
