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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

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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!

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

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.

"But it's also an extremely misleading answer, if not an outright lie. Because 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." Share on X

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.”

How are You? I'm Fine
"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 say, "I'm fine." Share on X

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.

Definition of I'm Fine
"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… Share on X

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.

"Still, I say, 'I'm fine,' despite the ongoing grief I battle, being constantly sick and having a body that keeps redefining itself." Share on X

Fine Is Not Always Fine

I’m fine has become code for ‘I’m not fine.’

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.

"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." Share on X

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 that Chronic Illness Makes Me Tell

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.

"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… Share on X

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.

"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." Share on X
Fine Is Not Fine

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.

"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." Share on X

Do you know that you talk about your illness a lot? I hear this accusation a lot, but one I can’t entirely agree with, there are reasons why I don’t always talk about my chronic life.

Like many people in this day and age, I share a lot online. And yes, much of my engagement online, particularly on social media, involves discussing my life living with a neurological disorder. After many years of not knowing the cause of the debilitating symptoms affecting me so immensely and feeling so alone, I began sharing many of the details of my ongoing journey with the vast array of unusual and puzzling symptoms, diagnosis and treatment. I’ve continued to share the ups and downs of living with a chronic illness. The lessons I’ve gleaned along the way as my symptoms worsened, becoming more disabled by them. I share much about my condition but don’t always discuss my chronic life.

I Don't Always Talk About Chronic Illness

But as someone who identifies as chronically ill, I find myself somewhat in a quandary. Because if you talk too much about it, that is all you are; an attention seeker, lazy, a burden. But, if you don’t talk about it or talk about it only a little, you must be faking.

"I find myself somewhat in a quandary. Because if you talk too much about it, that is all you are; an attention seeker, lazy, a burden. But, if you don't talk about it or talk about it only a little, you must be faking." Share on X

As a blogger documenting my experiences of living with a chronic illness, people see me as the former. They see me as an attention seeker who talks about chronic illness far too much than is necessary.

Why I Don’t Always Talk About My Chronic Life

But I do not share every detail about the illness, which is a massive part of my life. I do not talk about the endless doctor’s appointments that have only brought about disappointment and heartache. Because it is painful enough to have to sit and listen to bad news, such as there’s very little they can do just the once. But having to rehash such information through conversations or posts on social media is to relive the worst moment of living with chronic illness repeatedly. I have also set limits on how detailed or graphic I get so as not to make people uncomfortable.

But usually, I become quiet when experiencing a severe, debilitating flare. The pain silences me. It’s as though an evil presence steals the thoughts and words I wish to articulate. But I cannot. I am powerless against the metaphorical gag that pain has tied around my mouth. When symptoms are at their worst, it can be hard to find the words to express the depth of the pain as the symptoms’ incandescent rage wreak havoc upon my body and spirit. I struggle to find the words to describe the unsettling darkness that frequently descends as depression and anxiety become unwelcome guests inside my head once again.

"But usually, I become quiet when experiencing a severe, debilitating flare. The pain silences me. It's as though an evil presence steals the thoughts and words I wish to articulate." Share on X
Staying Silent on My Chronic Life
Photo by Kristina Flour on Unsplash.

So I don’t share. I don’t talk about my life and what it is like living with something so unwanted but will never leave. Instead, I flee to find privacy and solitude to escape my symptoms and struggles to cope with them being on display. Instead of shouting loud about my illness, I struggle on in silence, my private turmoil remaining a shameful secret deep inside.

"I flee to find privacy and solitude to escape my symptoms and struggles to cope with them being on display. Instead of shouting loud about my illness, I struggle on in silence." Share on X

Sometimes, Talking About My Illness Shines an Even Brighter Light On It

As symptoms continue their relentless assault on my body, overwhelming fatigue descends. Fatigue that is so intense writing, typing or even talking requires far more energy than I can summon. Even if I wanted to share my insights and experiences, I could seldom find the energy to do so.

When pain ramps up and symptoms worsen, it feels like a threat, a living nightmare I cannot escape. But giving voice to it feels like it only gives it more power. It shines a light on it, giving it much more attention than it deserves.

I think people must be sick of listening to me bitch about this illness that makes every day a battleground. But, just as they may be tired of hearing it, I am sick of living it. I am bored of having to talk about it. In truth, I would much rather be talking about something, anything, else. I would much rather be discussing the books I’m currently reading or the film I watched last night.

"But, just as others may be tired of hearing about my chronic illness, I am sick of living it. I am bored of having to talk about it. In truth, I would much rather be talking about something, anything, else" Share on X

It is painful to remember the person I envisioned I would become. Instead, I find myself imprisoned in a fragile and useless body, unable to be the person I want to be. Or even live the life I had dreamed I would have.

The Paradox of Chronic Illness: To Talk About It or Stay Silent?

I find myself trapped within a paradox where I don’t want to talk about living with a chronic illness but do it anyway. Scrolling through my feeds, I encounter irrefutable evidence corroborating that most of my posts are primarily concerned with chronic illness. So why do I spend much time discussing my life with chronic illness? Especially when I am sometimes reluctant to do so?

The overwhelming exigence of this illness, its symptoms and its increasing effects consume every part of who I am. It impacts every facet of my life and everything I do. So it can be hard not to talk about it when it’s so present in my life. My identity often buckles underneath the heavy burden of chronic illness, and I have to fight to remember what makes me, me.

"The overwhelming exigence of this illness, its symptoms and its effects consume every part of who I am. It impacts every facet of my life, everything I do. So it can be hard not to talk about it when it's so present in my life." Share on X

So I talk about my illness. I talk about the debilitating weakness in my legs. I discuss the grief of living in a body that I can no longer trust; the number of times my legs have given way, increasing exponentially. I talk about the unexpected symptoms that can wreck my day, sometimes even my week. I talk about them because they are my life. And so, it can feel that it is the only thing I have to discuss in my life.

"I talk about the unexpected symptoms that can wreck my day, sometimes even my week. I talk about them because they are my life. And so, it can feel that it is the only thing I have to discuss in my life." Share on X

Chronic Illness Dictates Everything In My Life, So It Is Hard Not to Talk About It

I don’t talk about it because I am uninteresting with nothing else going on in my life. I talk about it because no matter what I do, my illness always controls part of it. Like becoming a parent to a newborn, its arrival has taken over my life. It never takes a break; it is always watching, stalking my every move.

Sometimes I feel compelled to talk about my chronic illness to explain. I regularly need to explain why I am unable to participate in things or why I may suddenly cancel plans. I often need to throw light upon strange quirks that may seem odd to others but help me survive the onslaught of symptoms in a world where I feel I don’t belong. It’s almost as if I have to apologise or defend my existence in the world or the accommodations I need to make life easier, to feel safer in a world which can sometimes feel precarious because of my constant obliviousness to when symptoms will unexpectedly appear.

"I regularly feel the need to explain why I suddenly cancel plans. I often need to throw light upon strange quirks that may seem odd to others but help me survive the onslaught of symptoms in a world where I feel I don't belong." Share on X

Sharing my story openly and hearing that others have found comfort and validation in my words is incredibly meaningful for me. Not only does it prove that my experiences matter, that I matter, but it also proves that I can help and inspire others. It has given me purpose and is something positive that has come out of all my pain and struggles, something that I can hold onto and remind myself of on even my worst days.

"Writing and sharing my story has given me purpose and is something positive that has come out of all my pain and struggles, something that I can hold onto and remind myself of on even my worst days." Share on X

I Don’t Always Want to Talk About My Illness.

Some may say that I talk about my chronic illness too much. But in truth, the amount of time I talk about my condition is inconsequential compared to the thoughts and impact it has on my life. I wish it were something I didn’t have to think about or talk about, but as unwanted and disliked, but it is my life, my reality. If everyone else can talk about their lives without judgement, don’t I have the right to talk about mine?

"Some may say that I talk about my chronic illness too much. But in truth, the amount of time I talk about my condition is inconsequential compared to the thoughts and impact it has on my life." Share on X
The amount of time I talk about my chronic illness is inconsequential compared to the thoughts and impact it has on my life.

But I don’t always talk about my chronic illness. Sometimes, I am bored with the topic and would much rather have a conversation concerning books, films or the latest fixation on Netflix (or any of the other streaming services!)

Trigger Warning: Descriptions of Depression, Suicide and Suicidal Thoughts

I love losing myself in a story. I especially love doing so when experiencing adversity and setbacks in my health. It allows me the opportunity to escape from my life dictated by illness. Instead, I can experience excitement and adventure, albeit in my vivid imagination. With a clear beginning, middle and end, stories feel predictable and reassuringly safe with their linear narrative. Because living with a chronic illness is terrifyingly unpredictable, it has no neat beginning, middle and end. Chronic illness offers no arc, no gratifying climax or satisfying resolution. Instead, its narrative is chaotic, leaving you unsure which chapter of the story you are on. Or which chapter comes next.

In my last post, I wrote about the deterioration I have experienced in my symptoms of FND. A decline that I was entirely unprepared for and which I could not have foreseen. Acceptance, which I once worked so hard to achieve, was suddenly wrenched from my grasp. Once again, I found myself adrift, lost and trying to navigate the five stages of grief I addressed so long ago to find acceptance for this new body I now inhabited.

When confronted with worsening symptoms, we find ourselves thrown back into the five stages of grief and desperately searching for a way back to acceptance – a photo by Sofia Alejandra from Pexels.
"Acceptance, which I once worked so hard to achieve, was suddenly wrenched from my grasp. Once again, I found myself adrift, lost and trying to find acceptance for this new body I now inhabited." Share on X

As the days and months passed, I continued to be besieged by severe, unyielding symptoms. Any hope and positivity I possessed began to be concealed by dark, stormy clouds. As I struggled and wrestled with debilitating and disabling symptoms, I found that not only my physical health was suffering. So too was my mental health; the five stages of grief became fixated on just one: depression.

"As I struggled and wrestled with debilitating and disabling symptoms, I found that not only my physical health was suffering. So too was my mental health; the five stages of grief became fixated on just one: depression." Share on X

As Symptoms Worsen, Depression Can Start to Settle In

But it’s not only depression that paid a visit during the darkest days. Anxiety, too, joined the solemn party. My body, time and life became dictated by pain and illness; I became on edge about everything. Every day I edged ever closer to the abyss, with dark thoughts like hands extending and pulling me toward the brink.

Depressive thoughts extending like hands pulling me toward the abyss
"My body, time and life became dictated by pain and illness; I became on edge about everything. Every day I edged ever closer to the abyss, with dark thoughts like hands extending and pulling me toward the brink." Share on X

Soon, the presence of every persistent, unyielding symptom eclipsed everything else in my life. I felt numb to everything besides the severe, burning pain or the unrelenting, uncontrollable trembling in my legs. A pang of incredible sadness and darkness shrouded me, a deep depression settling into my life. I felt hopeless and helpless as I existed amidst it all, with no choice but to endure and continue on living. The future felt bleak and doomed as it seemingly only offered more of the same, or I feared there would be further deteriorations of my health and mobility.

I lost my appetite due to feeling constantly sick. I hardly slept. The effort of just trying to smile felt impossible, and a frowned, sad expression became the face I displayed to the world. Crying came so effortlessly, sobbing so much that I thought I would drown in my tears. Everything felt like such an effort that many things fell by the wayside as I had no energy or motivation to do anything. I no longer found enjoyment in the activities I love; even reading failed to bring the pleasure and escapism it previously did. I was moving through the days but not experiencing them.

"The effort of just trying to smile felt impossible, and a frowned sad expression became the face I displayed to the world. Crying came so effortlessly, sobbing so much that I thought I would drown in my tears." Share on X

Depression and Suicide: Death Can Sometimes Feel More Favourable Than Living A Life Sentence With a Chronic Illness

Each night I hoped that death would come for me, to free me from the pain and anguish that illness so often creates. But as I awakened each morning, I felt an overwhelming disappointment that I was still alive. I felt that life was no longer worth living, so I wanted mine to end. And then, on one awful, trying night, a night battling extreme, unrelenting symptoms, I tried to take my own life.

"Each night, I hoped that death would come for me, to free me from the pain and anguish that illness so often creates. But as I awakened each morning, I felt an overwhelming disappointment that I was still alive." Share on X

In complete despair, and with no end in sight, I placed a pillow over my head and attempted to smother myself with it. I had it over my face for a few minutes, light-headed from a lack of oxygen. I don’t know what made me stop, but I quickly removed the pillow from my face. Gasping for air, I dissolved into fits of tears, feeling shocked and shame at what I had just done.

I don’t think I ever actually wanted to die. Not really. I couldn’t see any other option as I felt depleted from fighting the pain, anxiety, depression, as well as a myriad of other symptoms for so long. I thought I had no more fight left in me. My thoughts always focused on the longing for the pain and the other cruel, relentless symptoms to cease. I wanted a break, some peace from the constant, horrible symptoms torturing my body.

When you live with a chronic illness, you know it is one with no expiry date. The knowledge that the pain and illness’s other debilitating symptoms are permanent can make death seem favourable. Suicide can seem the most exquisite kind of freedom, freedom from the pain and struggles of living with a chronic illness.

Same Shit, Different Day
Every day, an apt description of life with a chronic illness can feel the same as the constant, disabling symptoms that take over your life. It makes wanting to live almost impossible at times – a photo by Renda Eko Riyadi from Pexels.
"The knowledge that this debilitating illness is permanent can make death seem favourable. Suicide can seem the most exquisite kind of freedom, freedom from pain and struggles that come with living with a chronic illness." Share on X

Depression, Like Chronic Illness Is Debilitating and All-Consuming

Like chronic illness, depression is debilitating and all-consuming. Depression is like a bloodsucking parasite. It wheedles inside your mind feeding off your deepest fears and darkest insecurities. A parasite that made me believe that I was weak, a failure, a burden, whispering that no one could or ever would accept or love me as I am. It amplified the difficulties I was facing as impossible obstacles I could never overcome, making my life seem even more senseless.

"Depression made me believe that I was weak, a failure, a burden. It amplified the difficulties I was facing as impossible obstacles I could never overcome, making my life seem even more senseless." Share on X

Because of this, I isolated myself, not telling a soul about how bad my symptoms had gotten or the effect it was beginning to have on my mental health. I already felt like a burden on everyone around me. I did not want to burden them further with my fears that my symptoms were worsening and me becoming sicker as a result. But instead, my silence, the things I have been holding inside, only locked me inside an isolating, lonely prison.

"I didn't want to burden anyone with my fears that my symptoms were worsening, But instead, my silence, the things I have been holding inside, only locked me inside an isolating, lonely prison." Share on X

But I found that all my struggles seemed more bearable when I eventually gave a voice to everything I had held inside. It didn’t magically cure my symptoms or heal the depression that had wormed its way into my life, but I suddenly felt lighter somehow, knowing that I didn’t have to shoulder the burden alone anymore.

Asking For Help Can Be Scary and Intimidating But Really Helps When Struggling

I managed to schedule an appointment with a doctor at my local surgery. Thankfully, the doctor I saw was fantastic, spending over half an hour with me discussing the deterioration in my symptoms associated with my neurological disorder as well as the depression and suicidal thoughts. She also gave me a neurological examination. After a discussion, we decided to increase the medication I am already taking to treat depression and anxiety. The doctor is also referring me back to neurology for an urgent appointment. One I am still waiting on four months after that same appointment.

So, how am I feeling now? Well, the symptoms that had worsened all those months ago are still as bad. They continue to wreak havoc on my life, making everything extremely challenging. As a result, I still experience down days, many more than I would care to admit, and definitely, more than I would want. I am receiving help and support on coping strategies, practising mindfulness, and building resilience. I am focusing on accepting what I cannot change and taking steps to improve on the areas of my life that I can. All while trying to find acceptance for this new version of me, Rhiann 2.0, with worsening symptoms and worsening mobility.

" I am focusing on accepting what I cannot change and taking steps to improve on the areas of my life that I can. All while trying to find acceptance for this new version of me." Share on X

But I no longer have thoughts of wanting to die or even harming myself, which is an improvement from where I was all those months ago. Instead, I am concentrating my thoughts on all the reasons I have for living.

"Instead of focusing on everything that illness has taken from me, I am concentrating my thoughts on all the reasons I have for living." Share on X

If You Are Struggling, Please Don’t Do So In Silence – There are places you can go for help and support

If you are struggling with depression and suicidal thoughts, I’m sorry. I know just how tough it can be, but please don’t struggle in silence. Even if you cannot confide in a friend or family member, many organisations and helplines can help and give support. It may be a cliche, but talking about it indeed help, becoming unburdened and lighter from keeping it locked inside.

UK Samaritans: 116 123
SMS SHOUT to 85258
UK Calm (Campaign Against Living Miserably): 0800 585858

Mental Health Helpline For Wales: CALL (Community Advice and Listening): 0800 132 737
National Suicide Helpline: 0800 689 5652
National Suicide Prevention Helpline (US): 1-800-273-8255
Beyond Blue (Australia for help with depression, anxiety and suicide): 1300 22 4636
Canada Suicide Prevention Service: 1-833-456-4566

Or, for any other country, there is a list of suicide crisis lines available here.

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