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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?

"'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." Share on X
Wherever I am the symptoms will be too

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.

"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." Share on X

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.

"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." Share on X

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.

"I want good days and to feel alive rather than just surviving. So, I would opt to feel pain and feel the full force of my symptoms rather than be depressed." Share on X

What ifs: to go or not to go?

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.

I want good days and to feel alive rather tahn just surviving. I would rather opt to feel pain and the full force of my symptoms than be depressed

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.

".Some of the best experiences and my happiest memories were not pain— or symptom-free." Share on X

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 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." Share on X "I swallowed the maximum dose of painkillers while crossing my fingers that it would delay the inevitable assault of pain." Share on X

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.

"But even sometime later, symptoms lingered, pushing my body into a debilitating flare. But joy and exhilaration lingered, too." Share on X
"Although I'm on disability now, I never feel safe that I'll be able to keep them. And the threat of reassessment constantly looms over me." Share on X
"I've already proven to the powers that be that I'm disabled. So, why must I do it all over again to keep the benefits I need?" Share on X

The Humiliation of Divulging Details of My Weak, Faulty Body

"The constant need to assert my deficits to strangers trained to doubt me and who don't know me or understand my disability feels unsurpassable." Share on X
"As I write, I try not to cry or swear as I fight feelings of inadequacy. I feel less than as I confess to a faceless bureaucrat to everything my body no longer allows me to do." Share on X "The constant need to justify my existence is traumatising, exhausting and stressful. And it often feels that the system's designed to make us feel this way." Share on X
Filling out benefit forms is a stressful and demoralsing experience
Photo by Ryutaro Tsukata: https://www.pexels.com/photo/man-writing-with-pen-on-paper-6249385/

Why I’m Hesitant to Admit to The D Word

"It's heart-wrenching to hear the increasing vitriolic language toward people like me. Words like faker, burden, or drain on society scream at me from stories and tweets on my screen." Share on X "I shy away from using the D word: disability, as in, I'm on disability when asked what it is I do. Shame immediately set in whenever it has, as any self-worth I had disappeared into the abyss." Share on X

Being Sick is Not a Lifestyle Choice

Benefits: Being sick is not a lifestyle choice the government claims it is
"I didn't work hard for three years for a degree to spend every day hidden behind the same four walls. Instead, looking at the certificate I worked hard for, gathering dust is painful, taunting me about what could have been." Share on X

It’s Not All Endless Free Time and Fun

"On the one hand, home feels like a sanctuary, a safe place. On the other, it feels that the symptoms that plague my every waking moment continually hold me hostage in a prison I call home." Share on X
Stigma of Benefits: Home is my source of comfort. But my sanctuary can also feel like a prison

The System Makes Me Feel More Like a Criminal

"The stress of the claims process is worsened by a system that treats me like a criminal. Like, I've had to attend a tribunal in an actual court with guards and judges to prove the existence of my disability." Share on X

"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." Share on X
Illustration of a woman in an orange top holding a mobile phone. On the left of the image reads the '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: the chores left unfinished, my mobility aids scattered about, and the empty pill packets lying around." Share on X "Nobody can see, but I feel the symptoms constantly thrum through my body, causing persistent pain and discomfort." Share on X
On the right side lies an illustration of a woman with dark hair wearing a green top and blue trousers with hearts on staring out of a window with a cat sitting next to her. The text on the left hand side reads "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 my prison."
"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 my prison." Share on X "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." Share on X "Why would I fake an illness only to miss out on so much?" Share on X "I feel like I'm on trial; the words I carefully compose and share on social media are used as evidence as to my guilt or innocence of faking or exaggerating my life with chronic illness.: Share on X "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." Share on X
"During a flare, I don't possess the energy to grab my phone from its resting place to document how bad things are or how bad I feel for posterity on social media." Share on X "My social media is often a highlight reel of my life. It's a testament to the moments I'm feeling joy, positivity and well enough to post reflecting the times when I feel normal and now the sick girl I often am." Share on X
Teal, yellow and pink stripes with white text reading Why Would I Fake An Illness Only To Miss Out On So Much?
"It hurts more than I can say that people think I'm faking or exaggerating my illness for attention or likes. Especially when the illness is always very present, evident in my life." Share on X "I never want attention because when you become chronically ill, the only attention you do come by is unwarranted and intrusive." Share on X "I'm not faking being sick; I'm faking being well." Share on X

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.

"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." Share on X

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.

"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 what affects my life the most – chronic illness." Share on X

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.

"Although there is a lack of authentic representation of chronic illness in fiction, the six books mentioned in this post deeply resonated with me as someone with a chronic illness and disability." Share on X

THIS POST CONTAINS AFFILIATE LINKS. AS AN AMAZON ASSOCIATE, I EARN FROM QUALIFYING PRODUCTS.

6 Novels About Chronic Illness That Got It Right

Please Read This Leaflet Carefully by Karen Havelin

Novel about chronic illness: Please Read This Leaflet Carefully by Karen Haven

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.

"The beautiful, eloquent descriptions of what it's like to live with chronic, debilitating pain makes Please Read This Leaflet Carefully one of the best novels about chronic illness." Share on X

Get A Life, Chloe Brown by Talia Hibbert

Chloe Brown is a chronically ill computer geek with 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 time together, Chloe realises there’s much more 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.

"It was so incredibly comforting reading about someone who, like me, has bad pain days, brain fog, and a slew of other debilitating symptoms but is still considered sexy and attractive and worthy of love." Share on X

Take A Moment by Nina Kaye

Novel about chronic illness: Take a Moment by Nina Kaye

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 Glasgow hometown 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.

"Despite being a novel about a woman diagnosed with a chronic illness, Take a Moment isn't gloomy. It is a fun, heart-warming and life-affirming read about what we can do and achieve with the right support." Share on X

The Little Pieces of You and Me by Vanessa Greene

Novel about chronic Illness: The Little Pieces of You and Me by Vanessa Greene

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.

"Despite chronic illness not being centre stage, in The Pieces of You and Me, it was still a book that resonated with me because of its poignant and visceral descriptions of living with a neurological disorder." Share on X

Meet Me on the Buddy Bench by Hannah Pearl

Novel about chronic illness: Meet Me on the Buddy Bench by Hannah Pearl

When an ordinary bench becomes a lifeline…

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!

"The book gave a relatable and authentic insight into the reality of living with a chronic illness. Although light-hearted, it does not shy away from sharing the emotional and physical challenges of being chronically ill." Share on X

Tomorrow and Tomorrow and Tomorrow by Gabrielle Zevin

Novel about chronic illness: Tomorrow and Tomorrow and Tomorrow by Gabrielle Zevin

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.

"This book is a masterpiece on the daily challenges of chronic pain and illness and learning to find peace with our disabilities when we face them. A book that is beautifully written and hard to forget." Share on X

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.

"It is encouraging to see more novels about chronic illness on our bookshelves." Share on X

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!

February is the month of love. The world likes to remind me of it every day; emails flooding my inbox of gift ideas from retailers on what to buy that special someone. My social media feeds drown in stories of love and relationships and cliched quotes about romance. But these do not invoke warm feelings or feeling included. Instead, I find myself shrouded by loneliness; dating and my life with chronic illness seem so incompatible. Seeing so many revelling in Valentine’s celebrations is another painful reminder that I am single, still alone. Will anyone love me as I am? Will I ever find love?

Many of us dream of a love story to rival that from our favourite romance; or swept off our feet by a tall, dark stranger straight out of a Nicholas Sparks book. Such affairs, however, appear to be unattainable in the real world. Unfortunately, reality rarely plays out as they do in fiction. And men like those in Nicholas Sparks novels seemingly do not exist.

In truth, dating and the hunt to find love can be immensely challenging for anyone. It is a pursuit that requires you to put yourself out there act confident despite feeling self-conscious and vulnerable whilst trying to show the best possible version of yourself. So imagine how difficult it would be to navigate the dating field while living with the demands of chronic illness.

Dating & Chronic Illness
"Dating can be immensely challenging for anyone. But imagine how difficult it would be to navigate the dating field while living with the demands of chronic illness." Share on X

Dating and Chronic Illness: Does it Make Me Undesirable?

In the world of social media and the abundance of perfect, photoshopped images of what a ‘perfect’ body should look like, every one of us has insecurities about how we look. Whenever we look in a mirror or scrutinise ourselves in a selfie, our flaws and imperfections are immediately apparent. When I look in a mirror, I have never thought of myself as pretty or attractive; in my mind, I can still hear voices calling me ugly or a freak, as if I only heard them yesterday.

As I glance at myself in the mirror, I catch sight of evidence of how illness has changed my appearance. The constant pallor of my complexion and the neverending dark circles under my eyes; because of many nights being unable to sleep because of persistent, unbearable pain. The light and sparkle have disappeared from my eyes as my symptoms continue to dominate. And every movement, every step is a painful reminder of how chronic illness has utterly altered how my body works and its limitations. Or not, as the case may be.

Thanks to FND, my walking looks ugly. It isn’t cute or coordinated like everyone around me; instead, I more resemble Bambi as he learns to walk for the first time. It’s shaky, unsteady, and insecure. And worst of all, it all happens in slow-motion. I’m unable to rush just in case I trip over my own feet or fall over in a heap on the floor. So I move slowly, attracting stares, stares either out of curiosity or concern, but stares which I swear I can physically feel.

Dating and Chronic Illness: I Am More Likely to Draw Pity or Ridicule Than Admirors or Potential Suitors

As I walk, I attract attention, just not the kind of wanted attention. My walking isn’t likely to attract admirers or suitors but more likely to draw pity or ridicule. In such moments, I am wholly self-conscious and self-loathing of my declining, uncooperative body.

"As I walk, I attract attention, just not the kind of wanted attention. My walking isn't likely to attract admirers or suitors but more likely to draw pity or ridicule." Share on X

An unaccommodating body makes dating or pursuing any kind of relationship much more challenging. It’s hard to go on dates when the fatigue is intense, or the pain is so excruciating that I cannot stay still because I am in so much discomfort. It’s hard to plan dates when I don’t know how I will feel tomorrow. The thought of going on a date is anxiety-provoking when I am clueless as to if or when my legs will suddenly collapse from under me. And especially as I never know if I will get back up or even walk.

"It's hard to go on dates when the fatigue is intense, or the pain is so excruciating that I cannot stay still because I am in so much discomfort. It's hard to plan dates when I don't know how I will feel tomorrow." Share on X

My inability to leave the house alone makes dating and chronic illness much more incompatible. I cannot drive because of the persistent, debilitating symptoms, making arriving at a date near impossible. I am constantly in the dark as to when next my legs will give way or if I will be able to get back up if they do; the severity of such symptoms has meant that it is not safe for me to go out on my own.

How Can I Make Somebody Else My Condition, When I Don’t Always Understand It Myself?

There are so many unknowns surrounding the neurological disorder I share my life with; how can I make another person understand when I’m unable to myself? It’s tough to explain the limitations of where I can go or why venues with high ceilings trigger such debilitating symptoms. It’s hard to be vulnerable and let someone into my life with a chronic illness, especially as people have doubted that I am even sick or implied that my symptoms are ‘all in my head.’

I carry a lot of baggage because of living with a neverending illness. But I cannot lug all the luggage alone, making me feel like a burden. Because of this, I often feel unworthy of love. Inside my head is a voice convincing me that nobody would want somebody whose life is stained so profoundly by illness.

"But I cannot carry all my baggage alone, making me feel like a burden. Because of this, I often feel unworthy of love. Who could want somebody whose life is stained so profoundly by illness?" Share on X

In an advice column shared in the New York Times, entitled “Is it OK to Dump Him Because of His Medical Condition,” counselled the advice seeker, concerned about dating a man with Crohn’s disease, that “committing to this person may be committing to a life as a caregiver.” The columnist also voiced that “You don’t owe it to anyone to accept that burden.”

Is love incompatible for someone living with a debilitating chronic illness?
.Photo by Hassan OUAJBIR from Pexels

One advice column confirms what I have always feared; I am a burden, and worse, how others see me. Guilt gnaws away at me, expecting someone to share the burden of chronic illness with me. I didn’t choose it, but any future partner would be. But, I don’t want anybody to see my condition or disability as an overwhelming obligation, but instead as a problematic but manageable situation, just one part of who I am, not the entirety of my reality.

"But, I don't want anybody to see my condition or disability as an overwhelming obligation, but instead as a problematic but manageable situation, just one part of who I am, not the entirety of my reality." Share on X

Rejection: A Common Thread In My Relationships

For me, rejection is a common thread that has connected many of my relationships. Rejection doesn’t only pertain to my dating life but also family and friends. When my symptoms became more apparent, friends turned their backs because my illness inconvenienced them. Ghosted, suddenly cut off by friends I thought care, excluded and left out, I have experienced them all. Hurt and confused, I could no longer pinpoint where or if I ever belonged. I felt and continue to feel unwanted, worthless.

"Ghosted, suddenly cut off by friends I thought care, excluded and left out, I have experienced them all. Hurt and confused, I could no longer pinpoint where or if I ever belonged. I felt and continue to feel unwanted, worthless." Share on X

It only makes me become more and more closed-off and discouraged from letting anyone close to my heart. It seems easier to keep people at a distance than risk rejection again.

FOMO: The Feeling of Missing Out

For me, FOMO isn’t the fear of missing out. It has become the feeling of missing out. I often don a facade, snap and upload a picture intermittingly, or write a vague, positive status update, all to seem normal. Other times, I scroll through my feed and witness all the things I should be doing but seem unable. And the sting of being alone turns into a sharp pain, becoming more intense as I see those I know progressing in their personal lives with children and marriages.

"I scroll through my feed and witness all the things I should be doing but seem unable. The sting of being alone turns into a sharp pain, intensifying as I see those I know progressing in their personal lives." Share on X

But here I lie besieged with symptoms that continue to worsen. I feel like damaged goods, shelved like items reduced at the supermarket because of flaws or imperfections. And as my illness deteriorates, my chance of finding love or experiencing marriage and children seem to slip further out of my grasp. Instead, I feel stuck, encased in quicksand, sinking further, and gradually disappearing as chronic illness continues to pull me down into the abyss.

"I feel like damaged goods, shelved like items reduced at the supermarket because of flaws or imperfections. And as my illness deteriorates, my chance of finding love seems to slip further out of my grasp." Share on X

Dating and Chronic Illness: A Glimmer of Hope In The Love Stories of Others

But I hear stories that give me a glimmer of hope. I read stories of other chronically ill persons who have found love despite living with tremendous adversity. Those that have found a way to make dating and chronic illness achievable. The stories give me hope that you can find love, acceptance and someone who will not see me as a burden. They make me believe that I can find my very own romantic lead.

Love amd Acceptance are all I wamt
Photo by Natalie from Pexels

But still, I have doubts, doubts that I could attract anyone the way I am. I question whether I deserve such compassion; there must be something wrong with me for friends to abandon me so readily. I query whether I am an awful person; maybe I cannot be a good friend/girlfriend/wife. I distrust that any relationship will last; instead, I see myself rejected, left alone and lonely like the many times before. I don’t want to burden anyone or have anyone feel obliged to take care of me. I only want someone to see me as a person, as a partner, not as a patient or dependant.

Love and acceptance are all I want. Is that so much to ask?

"I don't want to burden anyone or have anyone feel obliged to take care of me. I only want someone to see me as a person, as a partner, not as a patient or dependant. Love and acceptance are all I want. Is that so much to ask." Share on X

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