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Fatigue: A More Fitting F-Word For My Chronic Life
In Chronic Illness

Fatigue: A More Fitting F-Word For My Chronic Life

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F**k. A profanity I find myself crying out when the pain becomes unbearable. Or after hurting myself after yet another fall. It’s a word that perfectly encapsulates the pain, frustration, heartache and the many downs of living with a chronic illness. Yet, it’s not the F-word that springs to mind when I think about my own experience of living with a disability. No, for me, the real f-word is fatigue. Why? Because it is my most formidable adversary – an intensely debilitating symptom that not only obliterates my energy but also has the might to make my existing symptoms worse. 

"For me, the real F-word is Fatigue because it is my most formidable adversary – an intensely debilitating symptom that only obliterates my energy but also the might to make my existing symptoms worse." Share on X
A rainbow background with pink and black leopard spots. In the middle of the image is a white blob shape text block with fatigue written in pink block capitals, beneath reads 'is the real' in black print and undernrath that reads 'F-word' in pink capital letters

Yet, it’s a part of my life with chronic illness that I haven’t given voice to before. I’m not sure why this is; it isn’t because the symptom is not as severe as all the other symptoms. Because it is, in fact, every bit as relentless as any of the other symptoms I endure every day. No, it’s because fatigue is difficult to articulate; so much more than one word can describe. Words grasp at it but never quite manage to capture it perfectly. However, when I do find the right words, it mutates, becoming more punishing and a damn more insidious. 

"Fatigue is difficult to articulate; so much more than one word can describe. Words grasp at it but never quite manage to capture it perfectly." Share on X

Fatigue: The Most Difficult Symptom To Withstand

Because of this, fatigue is often the most challenging symptom for me to try and manage. Indeed, a little white pill doesn’t always magic away the pain that is a constant reality. But there is no pill at all to try and alleviate the continuous crippling fatigue. I’ve learned to adapt to being in constant pain, but fatigue is much harder to withstand. Every day is a battle of trying to get through the day on a battery at risk of dying at any moment. But not even a whole night’s uninterrupted sleep is enough to recharge and replete my body’s run-down battery life.

"A little white pill doesn't always magic away the pain that is a constant reality. But there is no pill at all to try and alleviate the continuous crippling fatigue." Share on X

The symptoms of my illness remain invisible. However, perhaps the most significant clue to my ill health is the ever-present dark circles under my eyes. These permanent features on my face are not the result of late nights out burning the candle at both ends, but rather due to lying awake, tossing and turning as I battle intense, unendurable pain. At night, I often find myself lying awake, tired and exhausted, longing for sleep to claim me, yet it refuses to arrive. Even when I can snatch forty winks when I wake the next day, I don’t feel rested. I feel just as exhausted as before I hit the sack.

Fatigue Is So More Than Just Being Tired

But fatigue is so much more than being tired. Fatigue is an intangible presence that suddenly jumps out of the shadows, bleeding every ounce of energy I still possess. It’s a crushing, soul-sucking exhaustion that leaves me feeling as if I’m failing at life.

"Fatigue is an intangible presence that suddenly jumps out of the shadows, bleeding every ounce of energy I still possess. It's a crushing, soul-sucking exhaustion that leaves me feeling as if I'm failing at life." Share on X
Bright pink background with two stars diagonal to one another at the top left, and bottom right and in the centre of them are the words 'fatigue is so much more than just being tired'

It arrives without warning, an invisible force shrouding my body with an entrenched heaviness that makes it impossible for me to move any part of it. Every step feels like I’m dragging myself through thick molasses. Everything hurts, and a heavy, aching sensation overwhelms my body, almost like I’m battling the flu. I’m unable to function, dragged down into a fugue state where concentration is nigh impossible. There have even been times when the fatigue has been so severe that I’ve been lying down, only to realise that I no longer could move either of my legs. 

"Every step feels like I'm dragging myself through thick molasses. Everything hurts, and a heavy, aching sensation overwhelms my body. I'm unable to function, dragged down into a fugue state where concentration is nigh impossible." Share on X

But fatigue is not just physical; it is also a mental battle. As fatigue descends, it robs me of my ability to think clearly. The TV may be on, but it’s just for some company to fill the empty silence of my isolation. The noise from the television rings out in the background, but I don’t watch, unable to comprehend what’s happening on the screen. I pick up a book, but the words swim in and out into a jumbled, unintelligible mess. My memory’s terrible, forgetting all manner of things in ways that are unusual for me. I’m at a loss, not knowing what to do with myself in the fog of pain and fatigue. 

"But fatigue is not just physical; it is also a mental battle. As fatigue descends, it robs me of my ability to think clearly." Share on X

My Bed is Both A Comfort And a Prison

As the fog of fatigue descends, I feel the allure of my bed summoning me. I hear its siren call, ready to welcome me into its warm embrace. As I slip inside its warm covers, feeling the weight of the duvet, it feels like a loving hug. But it also feels like I’m surrendering to the enemy, letting my illness have its victory over me. Yet, it’s hard to ignore the temptation of my bed when my body is aching all over, and exhaustion is pulling me into a bottomless abyss. 

A pink with white swirls at the top left and bottom right hand corners. In the middle, is a white box and inside that is a watercolour picture of a woman lying on a bed in a pink feminine room. At the bottom of the white box reads 'Fatigue makes mh bed my sole source of comfort; but it also makes it my prison.' The end of the sentence is highligted by a pink watercolour stripe

Fatigue makes my bed my sole source of comfort, but it has also become my prison. The limitations of my body trap me and chain me to a bed where I have no choice but to live my life from its clutches. My bed has become not just a place for me to sleep but also a place to spend hours binge-watching reruns of my favourite programmes beneath cotton sheets. I always choose familiar shows, ones I’ve watched so many times I know nearly every word because I don’t have the mental capacity to give attention to something new or anything with a complex storyline. 

"Fatigue makes my bed my sole source of comfort, but it has also become my prison." Share on X

My Bed Has Often More Uses Than Just For Somewhere To Sleep

It’s also my favourite reading nook (when fatigue allows). I find nothing more comforting than burrowing beneath warm blankets as I escape from the reality of living with a chronic illness into the pages of a book and into a world that is so different from my own. Sometimes, it even becomes a cafe, where I bring food and drink to consume as I lie in bed, unable to drag my body from the confines of my prison. 

A light pink background with a bed in the middle taht has a grey duvet and one grey pillow. It also has a larger pink pillow at the back and a small pink pillow in the shape of a heart in front. Off the image are arrows pointing to what a bed is used for apart from sleeping - reading nook, home office, a place for respite, a prison, restaurant or cafe, place to cry, comfort and sanctuary, entertainment centre

It has even become a place not only for rest but also for work. From the quiet solace of my bed, I’ve planned, written, rewritten, and published dozens of essays (including this one). 

As Fatigue descends, I feel LIKe I Exist, Not Truly Living.

As I lie on my bed, I often feel like I exist, not truly living. I feel guilt for the things I should be doing but can’t. I even start to doubt myself, wondering if I’m just lazy despite the evidence of my illness and disability all around me. 

"As I lie on my bed, I often feel like I exist, not truly living. I feel guilt for the things I should be doing but can't." Share on X

Fatigue significantly impacts my life. It affects what I’m capable of each day and the insidious ways it creeps into my moods. In truth, it is the number one cause of my mood swings. As fatigue takes over my body and every task, however small, becomes unsurmountable, frustration and anger build. I’m angry at my body, which is failing me, but instead of getting angry at it, the anger’s misdirected toward whoever happens to be around. So, when fatigue is high, I often become irritable, short-tempered and moody, so beware!

"As fatigue takes over my body and every task, however small, becomes unsurmountable, frustration and anger build." Share on X

I have both good and bad days in my battle with fatigue. But, it still is chronic, and so it never goes away. Although I experience brief moments of respite, I still feel its presence like a malevolent shadow waiting in the wings, ready to attack.  Every day, fatigue makes every step, every move, an uphill struggle. And to make it through the day unscathed feels like fighting the most prolonged battle in the world. But, still, as I wake up every day and live my life despite it, it feels that I’m defeating the monster that is fatigue. 

"Although I experience brief moments of respite, I still feel its presence like a malevolent shadow waiting in the wings, ready to attack." Share on X
Fatigue: A More Fitting F-word For My Chronic Life
Fatigue: A More Fitting F-word For My Chronic Life
Fatigue: A More Fitting F-word For My Chronic Life
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A smiling woman taking at dusk in a field of sunflowers. Text at the bottom reads Why I'm Not Faking Being; I'm Faking Being Well
In Chronic Illness

Why I’m Not Faking Being Sick; I’m Faking Being Well

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“I’m Not Faking Being Sick; I’m Faking Being Well.”

Despite being sick, I’m never fortunate enough to receive flowers, gifts or cards. I don’t get anything; instead, I draw eye rolls as people become exasperated by my ill health. Rather than sympathy, people are accusing me of faking being sick for attention. Or using it as an excuse not to work and instead laze around the house all day, killing time. I never receive love or sympathy. Instead, I get disbelieving shakes of the head or glares when getting out of the car in a disabled bay. But I get no compassion. Instead, I’m the beneficiary of unsolicited advice; I should get out more for fresh air or to be more positive. But never hugs or presents.

Smiling, Looking Happy and Carefree…To Others, I Must Be Faking

It’s the reality when people cannot see your pain or the other symptoms accompanying chronic illness. They assume it doesn’t exist or that you’re exaggerating it to be much worse than it is. When I’m out, I’m smiling, make-up done, wearing clothes that make me look and feel good, alongside my colourful crutch. To them, I must be faking; someone genuinely sick wouldn’t be smiling, looking happy and carefree. A woman who is ill and disabled wouldn’t wear make-up or care about looking fashionable. To them, I must be faking, desperately seeking attention, wanting to stand out with my bright, fun and colourful crutch.

"It's the reality when people cannot see your pain or the other symptoms accompanying chronic illness. They assume it doesn't exist or that you're exaggerating it to be much worse than it is." Share on X

Yes, I like that it is aesthetically pleasing; I love that it looks fun and fashionable. But it’s my choice of crutch, not because I want attention. But because it’s more comfortable than anything I’ve used before. I felt miserable using the uncomfortable, grey, bulky crutch handed to me at the hospital. It caused pain and made me look and feel disabled. It feels that this illness stole my mobility and took my youth, femininity, love of colour and fashion.

But this crutch has not only helped with my mobility and reduced my pain but has also become an extension of my personality. They have become stylish accessories that I can coordinate with my outfits and a source of joy. They’ve gifted me new confidence in using them. More importantly, it has returned to me a part of myself that I thought I had lost.

Illustration of a woman in an orange top holding a mobile phone. On the left of the image reads the 'I'm not faking being sick; I'm faking being well"

But I’m Not Faking Being Sick; I’m Faking Being Well

People think I’m faking. And I am. But I’m not faking being sick; I’m faking being well. Nobody witnesses it, but I see evidence of my sickness daily. The remnants of illness echo everywhere around the house. It’s found in the piles of clothes left unwashed and unironed, the chores left unfinished, my mobility aids scattered around, and the empty pill packets discarded on my bedside table. My immediate surroundings are evidence of my sickness, as is my body. The dark, purply bruises under my eyes, my ashen complexion, and the cuts and bruises that decorate my body.

"Nobody witnesses it, but I see evidence of my sickness daily. The remnants of illness echo everywhere around the house: the chores left unfinished, my mobility aids scattered about, and the empty pill packets lying around." Share on X

But still, I’m continuously accused of faking or exaggerating my symptoms. But the truth is, I’m more likely to downplay the severity of my symptoms than to embellish them. The symptoms I live with may be invisible, but they are all too visible to me. Nobody can see, but I feel the symptoms constantly thrum through my body, causing persistent pain and discomfort. Those who judge, accusing me of faking, never know as I spend most of each day lying anywhere I can find.

"Nobody can see, but I feel the symptoms constantly thrum through my body, causing persistent pain and discomfort." Share on X

Much of that time, I’m lying with my eyes closed as I grapple with the pain and the other symptoms that are hell-bent on making life unbearable. But somehow, people think that I’m stuck at home by choice. There’s an idea that all I do all day is lie around in my pyjamas watching TV. A duvet day, every day, by choice, because to them, I’m lazy.

Like Ariel, I Wish I Could Be Part of Your (Healthy) World

But I’m not stuck at home all day by choice. It’s because that is the only option. Being at home every day is incredibly dull and depressing; my single experience is with my chronic illness. The world moves on, but still, I remain trapped, my body tethered to the confines of my home, wishing like Ariel that I could be part of the world outside of my prison.

On the right side lies an illustration of a woman with dark hair wearing a green top and blue trousers with hearts on staring out of a window with a cat sitting next to her. The text on the left hand side reads "The world moves on, but still, I remain trapped, my body tethered to the confines of my home, wishing like Ariel that I could be part of the world outside my prison."
"The world moves on, but still, I remain trapped, my body tethered to the confines of my home, wishing like Ariel that I could be part of the world outside my prison." Share on X

Every day, my head is full of wants and dreams, everything I yearn for and want to achieve. But all my desires and dreams are impossible to make reality. Because again and again, my body rebels against me, stopping me from living. I don’t choose to stay home every day; my body demands it. If I don’t conform to its demands, my body throws a tantrum to rival that of the naughtiest toddler. Living with chronic illness, FOMO isn’t the fear of missing out but rather the feeling of missing out. Grief constantly reappears as, time and time again, my body rebels, forcing me to miss out on joyous occasions I desperately wanted to attend.

"I don't choose to stay home every day; my body demands it. If I don't conform to its demands, my body throws a tantrum to rival that of the naughtiest toddler." Share on X

Why would I fake an illness only to miss out on so much?

"Why would I fake an illness only to miss out on so much?" Share on X

Accusations of Faking My Illness Is Not Only Limited To IRL

But it is not only in my real life that I have encountered allegations of faking my chronic illness. Horrible, vicious messages accusing me of faking being sick for attention or likes sneak into my DMs. Or even appear as anonymous comments on my blog by nameless, faceless trolls.

Writing about my experiences and sharing details of my life with chronic illness, some accuse me of talking too much about it. But some trolls take umbrage of my sporadic personal tweets that delve into life with chronic illness. Or they take issue that I don’t disclose everything about my life with chronic illness. As if, by not revealing everything about life with my health condition, then I can’t be living with it. Their venom, directed at me and my writing, calls into question the lack of photographs of myself looking ill. They question the lack of photos of the injuries I have obtained because of my symptoms. I feel like I’m on trial; the words I carefully compose and share on social media are evidence of my guilt or innocence of faking or exaggerating my life with chronic illness.

"I feel like I'm on trial; the words I carefully compose and share on social media are used as evidence as to my guilt or innocence of faking or exaggerating my life with chronic illness.: Share on X

But if I shared my reality of how bad I feel, every post would be a self-absorbed tale of woe. Who wants to constantly read details of how unwell I am or how miserable I feel? I know that’s not something I want to write about and share. It is difficult enough to endure the worst of times at the hands of chronic illness. But having to relive it all over again on social media only exacerbates the trauma. So, I don’t share; instead, I become quiet, my socials inactive as my time becomes preoccupied with surviving the flare.

"It is difficult enough to endure the worst of times at the hands of chronic illness. But having to relive it all over again on social media only exacerbates the trauma." Share on X

The Last Thing I Have the Energy For When I’m Unwell Is To Constantly Tweet About It!

I have little energy to do anything besides lying, staying in bed, and feeling terrible. The exhaustion penetrating my body makes me too tired to watch television, talk to anyone, or even move. I certainly do not possess the energy to lift my phone from its resting place to document how bad I feel for posterity on social media. Or, after a fall, my priority is getting myself to a safe space, tending to my injuries, ensuring they aren’t severe, and not taking a photograph of them to share online to legitimise my suffering.

"During a flare, I don't possess the energy to grab my phone from its resting place to document how bad things are or how bad I feel for posterity on social media." Share on X

I hesitate as my cursor hovers over the send button, unsure whether to catapult my innermost thoughts into cyberspace. I ask myself if I can or should reveal the private, intimate details of my thoughts, body, and life with chronic illness. But I do, not for attention or likes on social media, but because I remember the crippling loneliness I felt for years, living with mysterious and puzzling symptoms I had no answer for. If sharing my story and giving voice to this experience allows even one person not to feel that profound loneliness, it would give purpose to everything I have and continue to go through.

I have received many messages from people who have read my words or followed me on social media, saying they feel less alone because of my relatable descriptions of living with chronic illness. Every like I receive is not because someone likes my writing but because they understand and can sadly relate to my terrifying predicaments arising from my diagnosis. So, rather than wanting likes on social media, I’d prefer to have none.

Living With Chronic Illness Makes Me Feel Insecure and Embarrassed; Attention Is The Last Thing I Want

My social media feed is often a highlight reel of my life filled with smiles, laughter and a reflection of my likes and personality. This a testament to the moments I’m feeling joy and positivity and well enough to post. I’m happy to share such times because they reflect the time of my life when I felt normal and not the sick girl I often am.

"My social media is often a highlight reel of my life. It's a testament to the moments I'm feeling joy, positivity and well enough to post reflecting the times when I feel normal and now the sick girl I often am." Share on X

It hurts more than I can say that people think I’m faking or exaggerating my illness for attention or likes. Especially so when the said illness is always very present, evident in my life, ready to attack and ruin the here and now at its prerogative. It is apparent to me and those closest to me that I’m not faking being sick but being well. The symptoms affecting my mobility and balance are now all too visible to everyone that something is wrong with me, making me feel insecure and self-conscious. Because of this, I shy away from drawing attention to myself, preferring to stay in the background. Attention is the last thing I want, despite the accusations often directed at me.

Teal, yellow and pink stripes with white text reading Why Would I Fake An Illness Only To Miss Out On So Much?
"It hurts more than I can say that people think I'm faking or exaggerating my illness for attention or likes. Especially when the illness is always very present, evident in my life." Share on X

Because when you become chronically ill, the only attention you do come by is unwarranted and intrusive. I can physically feel stares boring into my back while my legs crumple beneath me, my crutch feebly maintaining my balance and me upright. Along with the stares, I hear not-very-whispered whispers as people suddenly look down after my eyes unexpectedly catch them staring at me. Or, strangers approach me, asking me intrusive questions about why I’m using a crutch and what is wrong with me, as if my health were a subject of debate like the weather.

"I never want attention because when you become chronically ill, the only attention you do come by is unwarranted and intrusive." Share on X

I’m Not Faking Being Sick; I Spend All My Time Faking Being Well

However, I’m often met with incredulous looks when I open up about my health condition. As if they think I’m faking it because I look fine, because of my faked healthy glow. It’s a cruel irony that the better I’ve managed my illness and the more adept I’ve become at hiding the signs, the harder it is for others to recognise it.

Because despite what you may believe, I’m not faking being sick. I’m spending all my time faking being well.

"I'm not faking being sick; I'm faking being well." Share on X

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

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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depression, suicide, suicidal thoughts
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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