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This Body Betrays Me is in large font at the top middle of the page. On the side of it reads Disability and Its Hidden Anger. The bottom shows a black and white photo of a woman sitting by a window with her arms clutching the top of her head
In Chronic Illness

Disability And Its Hidden Anger: This Body Betrays Me

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I live in a body that rarely feels like home. Though it belongs to me, it often acts like a stranger—an unwilling companion I never chose but must carry. I hold my breath, always bracing for the moment my symptoms strike and knock me off my feet. My legs give out without warning, sending me crashing to the ground. Even though I’ve learned to expect it – another consequence of living with a disability. I still feel a quiet, persistent anger rising inside me. It simmers beneath the surface, lurking in the silence where pain waits to flare. I don’t direct my anger outward; I turn it inward, toward the body I’m supposed to trust and call home.

"I hold my breath, always bracing for the moment my symptoms strike and knock me off my feet. My legs give out without warning, sending me crashing to the ground." Share on X
A simple design of a large quotation mark in pink at the top left-hand corner. The other quotation mark is at the bottom right, slightly larger but behind, so the colour is faded. In the middle reads 'I hold my breath, always bracing for the moment my symptoms will strike and knock me off my feet

Disability: My Body Is My Home – But I Don’t Feel Safe Here

My body is my home—my only permanent abode—yet I never feel safe inside it. They say the body is a temple, but mine feels more like a dilapidated house, one that is haunted by constant aches and unpredictable pain. My body moves in ways I can’t control—or it refuses to move at all. It aches quietly, collapses without warning, and spasms for no reason. It hides things from me, keeps its secrets, and exposes me in the worst ways. And it makes me vulnerable to injury, to misunderstanding, to judgment.

"My body is my home— yet I never feel safe inside it." Share on X "My body moves in ways I can't control—or it refuses to move at all. It aches quietly, collapses without warning, and spasms for no reason. It hides things from me, keeps its secrets, and exposes me in the worst ways." Share on X

Every time I stare into my mirror, I see evidence of my body’s fragility littered across my skin. As my eyes skim across every inch of my body, I notice the adornment of cuts and bruises, the inevitable fallout from the many falls and accidents from my disability.

"As my eyes skim across every inch of my body, I notice the adornment of cuts and bruises, the inevitable fallout from the many falls and accidents from my disability." Share on X

Each mark on my skin tells me I’ve lost the safety of trust and predictability—the quiet confidence that my body will respond, that my strength will endure. Instead, I am bracing. I am bracing for the next moment when my body will betray me. All too aware that it will do so again, again and again. I’ve had to endure moments when my legs gave out while crossing a street, when pain surged so violently I couldn’t speak, and when fatigue blanketed me so thickly I couldn’t lift my head. Each of these moments has only carved a chasmic crack in the already fragile foundation of my self-confidence. 

"I've had to endure moments when my legs gave out while crossing a street, when pain surged so violently I couldn't speak, and when fatigue blanketed me so thickly I couldn't lift my head." Share on X
A dark background with the text in different colours. In a pink colour at the top reads 'I never', then in white reads 'feel', then in lilac reads 'safe', reads 'in', blue reads 'my' and finally yellow reads 'body'. At the bottom are my Twitter and Instagram handles @serenebutterfly

But I Can’t Be Angry: I Have To Paint A Smile And Perform

Yet, I feel I’m unable to give voice to this part of my life with a disability. All because society deems it inappropriate for the chronically ill and disabled to express anger. Instead, people expect me to feel grateful for the small things and the lessons that illness can teach, be inspirational, and smile. I often feel pressured to paint a smile, brush the pain aside and find the silver linings underneath the dirt that this disability refuses to let me forget.

"I often feel pressured to paint a smile, brush the pain aside and find the silver linings underneath the dirt that this disability refuses to let me forget." Share on X

When I do speak of my anger, people flinch. They want to hear a story of acceptance and peace, not the rage and discontent inside me. But I want both peace and acceptance; I fight for it, but my body won’t let me have it. 

On the bad days, I hear cries to put on my favourite cheery pop song that makes me smile and turn the volume up loud. But as much as I want the music to drown out the sadness and anger, it’s not what I want to hear. Sometimes, I don’t need bubblegum pop’s uplifting, happy, saccharine lyrics. What I want to hear is an angry, angsty rock anthem type to listen to and emulate, and permit me to wallow in the anger that my body is betraying me.

"What I want to hear is an angry, angsty rock anthem type to listen to and emulate, and permit me to wallow in the anger that my body is betraying me." Share on X

I carry anger like ARMOUR

A bitterness creeps in whenever I hear ‘You look fine’ or ‘Think positively.’ As if my disability is a mere inconvenience, a temporary setback that I can snap out of with a positive attitude. But if they looked deeper, they could see the invisible chains that bind me, the constant battle raging within. 

It’s not only the physical pain that fuels the anger but the isolation that accompanies it. The fear of explaining my condition, the exhaustion of constantly managing my pain, and the fear of being a burden to those around me weigh heavily on me every day. The anger is a shield, a way to protect myself from the well-meaning but often insensitive comments, the pitying glances, the constant need to justify my existence. 

"The anger is a shield, a way to protect myself from the well-meaning but often insensitive comments, the pitying glances, the constant need to justify my existence." Share on X

My body is betraying me. It promises me a good day and then pulls the rug from under me without warning. Yet, people speak of ‘listening to your body’ as if it’s a wise inner compass. Mine no longer feels like a strong, resilient body – it is fragile. I reject the beauty standards society taught me and recognise this form as real, twisted, bruised, slow, and silent. My body may be powerful in its own right, but that power is rarely under my control. 

"My body is betraying me. It promises me a good day, then pulls the rug from under me without warning." Share on X

I feel a silent anger and rage toward it. A deep, bitter anger rises when I’m alone or tired; when I’ve had to cancel plans for the third time that week, or when I miss out on things others take for granted. The anger feels all too real; it pulses in my chest and curls in my fists. It is a grieving kind of fury – a longing for a body I will never have and the freedoms I’ve never fully known. 

" It is a grieving kind of fury – a longing for a body I will never have and the freedoms I've never fully known." Share on X

I carry this anger as a reminder of the battles I fight every day Because of My Disability

But I refuse to cover the pain with gratitude to make it palatable for others. I won’t smother my anger with false positivity or disguise my grief with a smile. My anger is the echo of the weight I carry because of this disability; a reminder of the battles fought inside my skin every single day. 

"My anger is the echo of the weight I carry because of this disability; a reminder of the battles fought inside my skin every single day." Share on X

I’m learning to accept this rage, to mourn the body I wanted, and to grieve the trust my body has broken. This anger is not the opposite of acceptance—it’s part of the process. It’s the fire that keeps me moving, breathing, and surviving.

This body may not always feel like home, but it’s still mine. I will carry the pain and fury because both are real and deserve acknowledgement. 

"This body may not always feel like home, but it's still mine." Share on X
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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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Deterioration: A Threat That This Isn't Over
In Chronic Illness

Deterioration: A Threat That This Isn’t Over

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As I stare out of my window, I witness the seasons changing. I saw as the leaves fell from the trees outside. The ground suddenly became a beautiful canvas of colours with orange, red, yellow, and green hues. The days gave way to cooling temperatures and darkening afternoons that stretch long into the night. And I have watched as heavy rain has pelted against my window panes. We can reconcile such changes by switching on cosy lights, wrapping up in chunky knits, or sipping a hot drink. But, sometimes, we cannot so easily accommodate change. Instead, change can be confronting and heart-wrenching for those living with chronic illness, specifically when deterioration strikes. The sudden appearance of symptoms or worsening ones can feel like a chilling threat that this isn’t over.

When it starts getting dark early, I like to accommodate such a change by using cosy lights. But we cannot so easily adapt to changes in symptoms due to a chronic illness in our lives.
"Change can be heart-wrenching for those living with chronic illness, specifically when deterioration strikes. The sudden appearance of symptoms or worsening ones can feel like a chilling threat that this isn't over." Share on X

Deterioration: A Threat That This Isn’t Over

The change and abrupt worsening of symptoms can develop suddenly, without warning. I know that it catches me completely off guard when it happens to me. It reopens the wound that living with a chronic illness has created, like a scab breaking open again and again. And the longer the worsening of symptoms lasts, the more it bleeds. Anxiety once again seeps into every facet of my life. During this recent deterioration, I had hoped that it was a blip. A flare that would dissipate as quickly as it appeared. However, the days turned into weeks and the weeks into months. I then had to consider the awful possibility that this deterioration was permanent. An old mantra tells us, ‘This too shall pass,’ but some storms sadly last forever when living with chronic illness.

"An old mantra tells us, 'This too shall pass,' but some storms sadly last forever when living with chronic illness." Share on X

Dizziness, pain, trembling and weakness in the legs, and vertigo are the main symptoms accompanying my life with FND. The majority of which are constant, debilitating, and affects every facet of my life. But although such symptoms have a profoundly negative impact on my quality of life, I have gotten used to them. I have found ways of coping with them and consolidating them as part of my life.

Deterioration: Losing My Grip On My Identity

But since all the symptoms have worsened, and some significantly so I have begun to feel adrift. I find it challenging to be buoyant by things that once helped me stay afloat. As symptoms become wild and uncontrollable, it is easy to feel like you’re losing control. The longer it continues, the more you become limited by persistent, unyielding symptoms. The thread of who you were and what you could do slowly becomes unpicked. It is easy to feel like you’re losing grip on your identity. And, how you think about yourself and your body changes and morphs into something darker and antagonistic.

My body has not fallen victim to any horrible accidents nor experienced significant injuries that could explain my sudden deterioration. There are no definite reasons for me to blame for my sudden less-abled body, making it all the more difficult to accept.

Compared to how the symptoms are now, they were previously a moderate annoyance. Now they behave like a toddler having one hell of a temper tantrum. Before now, I could not imagine how the pain I was experiencing could get any worse; it already felt raging and out of control. I soon learnt, however, that, unfortunately, the pain can indeed become worse.

Defeated by the Want To Get Better or Stronger

With an intensity I have never experienced before, the pain demands attention. A hot, burning pain radiates down my entire spine. And a severe tingling sensation shoots down both legs while sweat drips from my hair, trickling down my neck. The trembling in my legs is so intense that it feels like an earthquake is happening beneath my feet. And the falls that already punctuate much of my life have also increased with great intensity. Although they have not generated significant injuries, falls have worsened the pain I’m already in, much to my frustration. My legs constantly feel so weak, so much more fragile than before. So, standing and walking feels like even more of a precarious endeavour.

I so desperately want to get better, to see signs of improvement. But such a wish is one even the most potent genies cannot grant. Instead, getting better has become a fight that I cannot win. But I’ve tried, giving it my all. To feel better and stronger, I pushed through pain and fatigue. I have battled excruciating pain during gruelling physiotherapy sessions. I have made the appointments, seen countless doctors and specialists and taken the pills. But despite my great effort and my dogged determination, I remain defeated.

"I so desperately want to get better, to see signs of improvement. But such a wish is one even the most potent genies cannot grant. Instead, getting better has become a fight that I cannot win." Share on X

As The Intensity of Symptoms Expands, My World Shrinks

This sudden, unexpected deterioration has been overwhelming, demoralising and life-changing. As the presence and intensity of such symptoms expand, my world shrinks, my self-confidence obliterated beyond repair. Its broken pieces lay at my feet, ready to be rebuilt. It is easy to lose self-confidence in the villainous evil of chronic illness. It is easy to distrust resent a body that constantly fails you. And it becomes effortless to hate a body that continually embarrasses you as your legs regularly gives way.

"It is easy to lose self-confidence in the villainous evil of chronic illness. It is easy to distrust resent a body that constantly fails you. And it becomes effortless to hate a body that continually embarrasses you." Share on X

I have found that my self-confidence diminishes every time my legs give way. My positive self-image vanished as I was left flat on my face on the ground below. The more such incidents happen, the more the anxiety increases. Instead, it becomes easier to avoid situations where such events occur. And as the intensity of symptoms is still severe, it can be easier not to try; to not try and defy such severe, relentless symptoms in case of making them worse or our already fragile confidence.

Most days, I feel lost, obscured by pain and other debilitating symptoms affecting my present. I can’t help fearing the future, worried that worse will come. Photo by Annie Spratt on Unsplash

My New Comfort Zone; Safe but Limiting

For me, most of my time outside of the house now involves sitting in cosy coffee shops. The trembling and weakness have become so intense and severe that they consistently feel they will give way imminently. And more often than not, they do. So now, I have lost confidence with anything involving walking or standing. Now, things like shopping and exploring have become precarious and unsafe, both of which I used to enjoy.

Some days I feel lost, obscured by pain and debilitating symptoms that dominate my present, and I fear my future. But it is not only self-confidence I have lost; it feels that this sudden deterioration has left a blemish on my self-identity.

"Some days, I feel lost, obscured by pain and debilitating symptoms that dominate my present, and I fear my future. But it is not only self-confidence I have lost; this sudden deterioration has left a blemish on my self-identity." Share on X

Worsening Symptoms Has Left a Blemish on My Self-Identity

Who I was and the life I led has buckled underneath the heavy burden of illness. The girl who once wished for adventure in the great wide somewhere exists no more. Now such endeavours feel insurmountable as I continue to be hampered by severe, unyielding symptoms. Staying close to home has become challenging and testing, so the thought of going further afield feels impossible.

"Who I was, and the life I led has buckled underneath the heavy burden of illness. The girl who once wish for adventure in the great wide somewhere no longer exists." Share on X

I recently decided to cancel a cruise with my family, which was a difficult and heart-breaking decision to reach. But, I was struggling to cope even at home with such demanding symptoms. I knew that I definitely couldn’t if away from the comfort and familiarity of home. The very idea of a holiday I found painful. It was and is an agonising reminder of the permanence of chronic illness. Although it allows the opportunity to escape the monotony of everyday life, I cannot leave behind chronic illness’s unrelenting symptoms. Because chronic illness never takes a holiday. Chronic pain never takes a holiday. And disability never takes a holiday. Instead, I would have no choice but to pack them all and take them with me.

"Although a holiday allows the opportunity to escape the monotony of everyday life, I cannot leave behind chronic illness's unrelenting symptoms. Because chronic illness never takes a holiday." Share on X

Although I know my decision not to go was the right one, my head still makes me doubt myself. The dark thoughts that accompany the depression proclaim that I’m weak. And my head leaving me to believe that I am letting my illness win by not going.

Grief and Despair; Unwelcome Visitors Once Again

It feels that this sudden deterioration has thrust me into the stormy waters without a life jacket. Its powerful waves pull me under into the dark, murky depths, unable to break free. Drowning in feelings of sickness, symptoms continuing their strangling hold on my life. In my despair, I want nothing more than to be better. To finally feel normal, unfettered from the constraints and restrictions from illness. But to my horror, I instead find myself becoming worse. It seems that I am becoming weaker and more disabled by illness and its symptoms than before.

"In my despair, I want nothing more than to be better. To finally feel normal, unfettered from the constraints and restrictions from illness. But to my horror, I instead find myself becoming worse." Share on X

Grief and despair have become part of my journey living with a chronic illness once again. Floods of tears flow from my eyes, especially as I continually lose the battle with my body. The nights are long, battling with persistent, unmanageable symptoms. Dark, depressive thoughts quickly surface, wanting to give up, not knowing how much more I can endure. Any hope that I once held onto dramatically dwindles as I continue to be defeated by pain and illness.

"Grief and despair have become part of my journey living with a chronic illness once again. Floods of tears flow from my eyes, and the nights are long, battling with persistent, unmanageable symptoms." Share on X

The only hope I can hold onto is that although the deterioration I am experiencing isn’t temporary, the painful, turbulent emotions accompanying it are. I have adapted to severe, debilitating symptoms before, learning to consolidate them as a part of my life. If I have done it before, I hope I have the strength to do it again.

"The only hope I can hold onto is that although the deterioration I am experiencing isn't temporary, the painful, turbulent emotions accompanying it are." Share on X
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