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Invisible in Books As I Am in Life
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As Invisible In Books As I Am In Life

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Why We Need More Representation of Chronic Illness in Books

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

"Since becoming #chronicallyill, books have become even more crucial. Books have become a magical portal allowing me to escape the severe, debilitating symptoms that are now my constant reality." Share on X
Pink background with a girl reading a book she is holding in her hand with text that reads 'Books are a magical portal allowing me an escape from pain and chronic illness'

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

"If representations of chronic illness did exist in books, I imagine the inked words rising from the pages like a pair of arms embracing me, reminding me I'm not alone." Share on X
A picture of a girl, on her right lies a pile of book, and to the left two books with a pair of glasses and a cup of tea on top. Girl is reading a book. Lies above are the words 'We read to know we're not alone' by William Nicholson

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

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

Why We Need More Representation of Chronic Illness in Books

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

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

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

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

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

Representation Can Improve Understanding of Experiences Beyond That of Our Own

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

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

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

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

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

Chronic Illness Needs More Representation in Books

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

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

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

"Because no matter who you are, the bookshelf and the literary world should be a place for everyone. The books aligned on our bookshelves should be as diverse as the world we live in." Share on X
As Invisible in Books As I Am in Life
As invisible in Books As I Am in Life
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I'm Fine A Lie That Chronic Illness Makes Me Tell
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I’m Fine: A Lie Illness Makes Me Tell

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‘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
I'm Fine A Lie Chronic Illness Makes Me Tell
I'm Fine A Lie That Chronic Illness Makes Me Tell

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Why I Don't Always Talk About My Chronic Life
In Chronic Illness

Why I Don’t Always Talk About My Chronic Life

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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!)

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Dating & Chronic Illness Main
In Chronic Illness

Dating & Chronic Illness: Will Anyone Love Me?

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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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In Chronic Illness

Depression: The Darker Side of Chronic Illness

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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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