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In Chronic Illness

The Magic of Hope In the Storm of Chronic Illness

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When the Days Blur

"Living with chronic illness is like battling through an endless storm. Some days bring gentle swells. Others, it’s all I can do to stay afloat." Share on X

A chronic illness turns life into a constant fight against an endless storm – some days, it’s gentle swells; others, it’s all I can do to stay afloat. I fight to keep my head above water, as pain, fatigue, and the invisible weight of it all threaten to pull me under. But through these waves, I’ve discovered something powerful: the quiet but steady force of hope. For me, hope and chronic illness are inseparable – hope is what keeps me moving forward, even when my body tries to hold me back. I’ve learned that despite the challenges of chronic illness, hope is what keeps me afloat.

"Hope and chronic illness are inseparable — hope is what keeps me moving forward, even when my body tries to hold me back." Share on X

Let me drop anchor for a moment and get real. This life isn’t easy. 

Some days blur into each other so completely that I lose time — not because I’m busy, but because I’m not. 

I wake up in the same bed, in the same body that refuses to cooperate and face the same routines that feel more like rituals of survival than living. Chronic illness has shrunk my world. It has weighed down my choices, flattening my day into cycles of symptoms, medications, appointments and recovery. Each day blends into another shade of grey. I sit behind the same four walls, wishing – like Ariel – to be part of the world beyond.

"Each day blends into another shade of grey. I sit behind the same four walls, wishing – like Ariel – to be part of the world beyond." Share on X

In the monotonous cycle of symptoms and exhaustion, it’s easy to feel lost. But I’ve found that hope and chronic illness, two opposing forces in my life, can coexist. It’s this hope that pulls me through the haze and reminds me there’s still a world beyond these four walls.

"Even from my bed, even on my worst days, I can still dream of the horizon." Share on X

Holding Onto Hope

But here’s the lifeline I cling to: hope. And for me, hope takes the form of a cruise ship. 

For me, holidays are so much more than just a break from the normality of daily life. They’re lifelines. Knowing I’ll be stepping aboard a ship of dreams has become a lighthouse in the fog — a bright spot on the calendar that gives structure to the shapelessness of sick days and sleepless nights. It’s so much more than a holiday; it’s a reason. A reason to get through the next appointment, the next flare-up, the next moment of despair when the walls of my bedroom feel like they are closing in. It’s a reason to believe that something different, something joyful, lies ahead. 

"It’s so much more than a holiday — it’s a reason. A reason to believe that something joyful still lies ahead." Share on X

THE JOY OF ANTICIPATION

At the sight of the confirmation email, anticipation begins to fizzle inside of me. Every part of the planning process feels like I’m reclaiming a little bit of control. Browsing the deck plans, researching shore excursions, imagining myself watching the sunset over endless water, each detail becomes a thread stitching together a tapestry of joy. 

Each cruise I plan is a beacon – proof that hope and chronic illness can coexist. Even my body demands caution, the excitement of the journey ahead reclaims a part of me that illness often tries to take away.

I imagine myself there, not enduring but experiencing. 

"I imagine myself there, not enduring — but experiencing." Share on X

It doesn’t matter that I might need a wheelchair or that I have to schedule my medications like a military operation. It matters that I’m reclaiming a part of myself that illness has stolen from me, and reclaiming a sense of freedom, as the ships set sail, and the horizon looms ahead of me. The vastness of the water opens in front of me, and suddenly, the world feels vast and full of possibility again. 

Memories That Keep Me Afloat

There, I’m not just a patient or a set of symptoms, but a person sipping a fruity mocktail garnished with an absurdly cheerful umbrella. I enjoy the feel of the sun on my face and the wind in my hair. Yes, pain and fatigue still come with me. But they’re not what I remember most. 

I think back to the moments that have stayed with me from past cruises, the memories that shine through the fog. It’s not the pain that I remember, but the history and beauty of the old part of Estonia. I only remember being awestruck at seeing The Little Mermaid for myself, finally in Copenhagen. In Stockholm, I remember the fun and joy of the Abba Museum, singing and dancing along to songs I know so well.

And it reminds me that joy is still possible. That my life, even with its limits, still has room for magic. Most of all, sitting on that balcony with miles of ocean beyond reminds me that I’m still living, not just enduring.

"Joy is still possible. Even with limits, even with pain — there’s still room for magic." Share on X

Riding The Rough Waters

Of course, it’s not always plain sailing. It’s not a cure, nor does it erase the reality of my illness. I have had to expect and accept the inevitable bad days. But they feel somehow different at sea. They don’t feel as heavy when the world outside my window is constantly moving, changing, expanding. I don’t feel as stuck. After a long day exploring wherever we’ve happened to dock, I feel a sense of accomplishment. I’m finally able to feel like I’m achieving something, instead of putting my life on hold until I’m better. There’s still life happening, and I get to be a part of it — and living it — even from my cabin. 

Anchors on Dark Days

Having something on the horizon fuels hope. The hope that whispers to me during my darkest moments refuses to let me give up. And I’ve learnt that hope doesn’t have to be big or Instagram-worthy. Its shape doesn’t have to be a cruise ship, or a plane ticket, or a passport stamp. Sometimes, it’s something much smaller. I find it during an impromptu lunch with a friend. A new book that I’ve been waiting with bated breath to read. A film I’ve been wanting to see. A day where the pain eases just a little.  A new show to binge when the fatigue won’t let me move. These are my anchors, too.  

"I’ve learned that hope doesn’t have to be big or Instagram-worthy. Sometimes, it’s just a good book or a moment of quiet relief." Share on X

They’re small lights on dark days. The glimmers that remind me that joy still exists; there are still things to feel curious about, to anticipate, to delight in. That despite everything – the limits, the grief, the story seas – my story is far from over; the horizon still calls to me. And I’m still sailing toward it.

Norway on the Horizon

Just as I once stood in the shadows of castles and sang beneath museum lights, soon I’ll sit with a blanket draped around my shoulders, watching the Norwegian fjords drift past. Already, I hear the call of Norway summoning me. It’s a journey that I’ve etched into my calendar not just as a trip, but also as a promise. A promise that I can still find beauty in the world, even after all the dark, difficult days. I can already picture the majestic fjords rising from the mist, the hush of the water beneath the ship, and the quiet majesty of it all. I imagine myself there, wrapped in a blanket on the balcony, breathing in air that tastes of something new. It’s not about escaping my illness — I’ll carry it with me, as always — but it’s more about carving out space for wonder.

For two weeks, I won’t just be surviving, I’ll be living. I’ll watch waterfalls cascade down ancient cliffs and feel reminded of how much life I still have to live. The cruise isn’t just a destination — it’s my lighthouse. It’s my reminder that illness may take much, but not everything. That, despite the dark, monotonous days of pain, fatigue and all the rest, there is still room for joy and wonderment. 

"Hope is my lifeline. The thing that whispers 'not yet' when the weight of illness says 'give up'." Share on X

Toward the Light

Though the storms of chronic illness still rage, hope and chronic illness remain intertwined in my story. That light on the horizon reminds me that I’m still sailing – still living, still dreaming, still moving toward moments of joy.

"Chronic illness may take a lot, but it hasn’t taken everything. I’m still here — still living, still hoping." Share on X

What anchors you when the storm hits? What gives you something to look forward to?

picture of a lighthouse emitting a light over the sea late at night - a beacon of hope.












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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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Looks like a scrapbook with three polaroid photographs (two at the top and one on the bottom right side). To the left of the bottom photo says 'Joy existen even if my memories were not free from pain.' Underneath has the blog website brainlesionandme.com
In Chronic Illness

‘Joy Existed Even if My Memories Were Not Free From Pain.’

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The first feeling I had as I stared at the confirmation email that landed in my inbox was excitement. I felt exhilarated at the prospect of escaping the gilded cage that illness had created for me. I was excited by the promise of a change of scenery from this gilded cage my home has become. But it also came with trepidation. Why? Because, unfortunately, I’m unable to escape my disabled body. I can’t take a holiday from this illness that controls much of my life. Instead, I have to make room and take them with me. Because wherever I am, the symptoms will be, too. Where I am is irrelevant; pain and all the other symptoms will exist no matter where I am. So how can I feel joy about travelling while I’m drowning in a torrent of pain and besieged by a myriad of other horrible symptoms?

"'I'm unable to escape my disabled body. I can't take a holiday from this illness that controls much of my life. Instead, I have to make room and take them with me." Share on X
Wherever I am the symptoms will be too

None of my days are symptom-free. Every day, I experience crushing waves of pain, weakness, fatigue or dizziness, waves that drag me deep into the abyss. Some days, I experience two or three severe symptoms; on the worst days, I come up against all of them. So, much of every day, I make decisions explicitly designed to avoid physical pain. I spend every day doing everything in my power to prevent triggering any of the symptoms that make my life increasingly oppressive.

"Much of every day, I make decisions explicitly designed to avoid physical pain. I spend every day doing everything in my power to prevent triggering any of the symptoms that make my life increasingly oppressive." Share on X

Glimmers that once sparked joy are now pushed into the shade.

So, I decline social invitations, cancel long-awaited plans and wave goodbye to passions and ambitions that once nourished my soul. But by doing so, I’ve paid a hefty toll. As the symptoms play a more prominent role in my life, my world becomes smaller and more isolated. The only company I seem to keep are the symptoms that forever haunt me. I often stare outside, wishing to be part of the world beyond my window. The glimmers that once sparked joy suddenly pushed into the shade, shrouded in darkness that light cannot reach. Because of this, I, like so many others living with a chronic illness, often experience depression, a byproduct of the happy, joyous moments that sickness has stolen from me.

"I often stare outside, wishing to be part of the world beyond my window. The glimmers that once sparked joy suddenly pushed into the shade, shrouded in darkness that light cannot reach." Share on X

So, saying yes to a marathon visit to bookstores, a trip to my favourite shopping haunt, a night out at the theatre, or a voyage on a cruise ship is a way of reclaiming some of the stolen joy illness snatches away. I do so despite knowing the heavy price to pay for these small snippets of normality: the rigidity and incandescent pain that rages through my legs, the all-consuming fatigue that overwhelms my entire body, and the dizziness and vertigo that refuses to relent, forcing me to lie down gripping at sheets as everything around me spins. I want good days and to feel alive rather than just surviving. So, I would opt to be in pain and feel the full force of my symptoms rather than be depressed.

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

What ifs: to go or not to go?

But as the symptoms became more intense and severe, the anxiety about going at all increased. I didn’t want to go, only to have the cruise ruined by my erratic and unpredictable body. Was it even possible to postpone until I felt stronger and better prepared? Or at least until the symptoms were not so out of control and were no longer making my life a living nightmare.

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

For me, a cure or getting better is a wish only a Fairy Godmother could grant. But my life is no fairytale. It might not even be a flare, but the start of my symptoms worsening again. Right now, it might be the best it gets. Whatever the case, I cannot put my life or plans on hold, however much I would like to.

My mind constantly raced with thoughts of what if—catastrophic thoughts of what would happen if I did go and thoughts of what if I didn’t. But ‘what’ and ‘if’ are as nonthreatening and insipid as two words can be. But together, side-by-side, they have the power to haunt you with anxiety or regrets. As much as I feared going, I also feared that I would always regret it if I didn’t go. As unwell and anxious as I felt, what if I had gone would forever haunt me.

My most treasured memories were not pain or symptom-free

But I did it. After a whole lot of tears, anxiety attacks, as well as pep talks and words of encouragement, I did it. Despite feeling weak, defeated and broken by both my physical symptoms and mental health, I amazed myself by achieving what I thought was unthinkable – stepping on board, passport in hand, ready to cruise.

Reflecting on this cruise and those preceding it made me realise something. Some of the best experiences and my happiest memories were not pain— or symptom-free.

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

The pain and other symptoms, as severe as they were, are not what I remember most from the trips I’ve loved while cruising. What I remember most is being in awe of the majestic scenery as I stood in the fjords of Norway. I look back now on not the amount of pain I was in but standing on a ferry, witnessing the beauty and quaintness of Portofino as it came into view. Only the joy and excitement of seeing a pod of dolphins as they jumped alongside the ship remain, not the days spent feeling sick in the cabin. What I remember is not the crushing fatigue but walking the pretty streets of Sorrento. I dwell on not the nights spent in the cabin in pain but the lovely, joyful memories of nights eating fantastic food and sipping delicious cocktails.

Symptoms lingered, but joy lingered, too.

I look at pictures of myself while travelling, and I’m glowing—beaming in a way I haven’t seen myself in a long time. For the first time in a long time, it felt like I was living and not just existing. Illness and its vast array of symptoms have long ago created a gilded cage, and for me, books were its key. Reading allows me to escape the cage and experience worlds and places, both real and imagined. But as I stood on the balcony, watching the glistening blue waves of the ocean, my world no longer felt small and secular. My world suddenly expanded, and I was a part of it, experiencing it for myself instead of observing it from a tower, like Rapunzel or reading about it from a book.

"'But as I stood on the balcony, watching the glistening blue waves of the ocean, my world no longer felt small and secular. My world suddenly expanded, and I was a part of it, experiencing it for myself." Share on X
"I swallowed the maximum dose of painkillers while crossing my fingers that it would delay the inevitable assault of pain." Share on X

But all good things must come to an end. But, for each excursion and every accomplishment came a physical cost. I swallowed the maximum dose of painkillers while crossing my fingers that it would delay the inevitable assault of pain. I diligently took the correct dose of my other pills and hoped they would ease the nausea and dizziness advancing toward me. But, living with a chronic illness, I often have to prepare to worsen my symptoms for a slice of normality. I must pay the price to take part in everyday things everybody else takes for granted. But even sometime later, symptoms lingered, pushing my body into a debilitating flare. But joy and exhilaration lingered, too – almost making the pain worth it.

"But even sometime later, symptoms lingered, pushing my body into a debilitating flare. But joy and exhilaration lingered, too." Share on X
Joy Existed Even if My Memroes Were Not Free From Pain
'Joy existed even if my memories were not free from pain.'
'Joy Existed Even if My Memories Were Not Free From Pain.'
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I'm on Benefits, But Stigma Makes Me Feel Ashamed
In Chronic Illness

I’m on Benefits, But Stigma Makes Me Feel Ashamed

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How do you feel when you find a brown envelope in your mail? I never used to pay much notice; instead, I ripped into the envelope without any thought. Now, however, the sight of one sends me into a tailspin. Since I became disabled and unable to work, I’ve had the constant stress and worry of dealing with the DWP. I’m on benefits, but I’m made to feel ashamed for doing so. 

Whenever a brown envelope arrives at my door, I feel a pit in my stomach. The mere sight of it feels like a threat. I fear what lies in wait for me in the contents of that threatening brown envelope. Although I’m on disability now, I never feel safe that I’ll be able to keep them. And the threat of reassessment constantly looms over me. 

"Although I'm on disability now, I never feel safe that I'll be able to keep them. And the threat of reassessment constantly looms over me." Share on X

Last year, the threat of reassessment became a reality. Forms packaged inside a large brown envelope landed on my doorstep, triggering stress and anxiety. I’ve already proven to the powers that be that I’m disabled. So, why must I do it all over again to keep the benefits I need?

"I've already proven to the powers that be that I'm disabled. So, why must I do it all over again to keep the benefits I need?" Share on X

The Humiliation of Divulging Details of My Weak, Faulty Body

The constant need to assert my deficits to strangers trained to doubt me and who don’t know me or understand my disability feels unsurpassable.

"The constant need to assert my deficits to strangers trained to doubt me and who don't know me or understand my disability feels unsurpassable." Share on X

Although my body is constantly reminding me of the presence of the symptoms ravaging my body, I seldom think about it. So, the need to recount the private details of all the ways my body fails me is humiliating and dehumanising. As I write, I try not to cry or swear as I fight feelings of inadequacy. I feel less than as I confess to a faceless bureaucrat to everything my body no longer allows me to do. 

"As I write, I try not to cry or swear as I fight feelings of inadequacy. I feel less than as I confess to a faceless bureaucrat to everything my body no longer allows me to do." Share on X

I feel disheartened as I see in black and white all the ways my life has changed because of my sick, ailing body. Reading my words back to me, I can’t recognise myself as the person I once was. It was only when I first applied for PIP that I first understood and accepted that disability was now going to be a large part of my life.

The hardest part of knowing this process isn’t the end. In another three years, I will need to prove my disability all over again. The constant need to justify my existence is traumatising, exhausting and stressful. And it often feels that the system’s designed to make us feel this way. 

"The constant need to justify my existence is traumatising, exhausting and stressful. And it often feels that the system's designed to make us feel this way." Share on X

In the UK, PIP is a benefit that helps with the increased costs incurred when living with a disability. It might go by another name in a different country. What is universal, however, is the stigma of being on benefits and the struggle to apply and get them.

Filling out benefit forms is a stressful and demoralsing experience
Photo by Ryutaro Tsukata: https://www.pexels.com/photo/man-writing-with-pen-on-paper-6249385/

Why I’m Hesitant to Admit to The D Word

As a disabled person living in the UK, it’s heart-wrenching to hear the increasing vitriolic language toward people like me. Words like faker, burden, or drain on society scream at me from stories and tweets on my screen. 

"It's heart-wrenching to hear the increasing vitriolic language toward people like me. Words like faker, burden, or drain on society scream at me from stories and tweets on my screen." Share on X

It’s because of this I shy away from using the D word: disability, as in, I’m on disability when asked what it is I do. Shame immediately set in whenever it has, as any self-worth I had disappeared into the abyss.

"I shy away from using the D word: disability, as in, I'm on disability when asked what it is I do. Shame immediately set in whenever it has, as any self-worth I had disappeared into the abyss." Share on X

I worry they will judge me, even if they never say it out loud. I fear they’ll think less of me for not working when, for many people, their career is a fundamental part of their identity. And I worry that they’ll see me as the stereotypical disabled benefit claimant depicted by the media and our government. 

Like most other disabled people, I’ve had people make light of the fact that I don’t work. When I hear their words, I can’t feel like a second-class citizen. And, like, I don’t matter because I still rely on government handouts. 

Yes, it’s true I’ve attended university and achieved a degree in Psychology, but that doesn’t mean I can work. If it weren’t for the support from the disability services, my degree would never have come to be. Now, the challenges my disability poses in my everyday life have become so unsurmountable that the prospect of being able to work has become nearly impossible. 

Being Sick is Not a Lifestyle Choice

My disability and its symptoms are the only predictable aspect of my life. I can no longer manage a consistent routine as my body continually reminds me that it calls the shots. First thing in the mornings, my legs refuse to work, leaving me stuck in bed until they decide to function enough that I can leave it. Or the sudden, crushing fatigue that comes from nowhere where I can’t function, my bed becoming both a haven and a prison. Or even the everlasting unpredictability of the never-knowing when my legs will give way next. My legs can give way at any time, anywhere, meaning it’s not safe to go out alone. 

Benefits: Being sick is not a lifestyle choice the government claims it is

Yet, the media and the UK government like to describe people like me as shirkers while languishing on benefits and sticking two fingers up at hard-working taxpayers funding our ‘lifestyles.’ The stories in the media make it sound easy to claim benefits which bear no resemblance to the system I and others navigate. Instead, it’s a stressful, miserable and demoralising experience. But being sick and needing to rely on benefits isn’t my choice. I didn’t ask or want to waste my days stuck at home. I didn’t work hard for three years for a degree to spend every day hidden behind the same four walls. Instead, looking at the certificate I worked hard for, gathering dust is painful, taunting me about what could have been. 

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

It’s Not All Endless Free Time and Fun

Yet, when I am brave enough to disclose my inability to work, people often exclaim how nice it must be to stay at home all day doing nothing. Whether in person or online, people presume my life is fun, an enjoyable luxury, as I stay home all day. It is as if they believe all my time involves lounging around watching Netflix all day or taking infinite naps. But not working does not mean endless free time and fun. I still have chores and all the admin being ill entails. 

In truth, I have ambivalent feelings about what I call home. On the one hand, it feels like a sanctuary, a safe place. As I walk through its doors, I feel sheltered, secure and comforted from the worst that chronic illness throws at me. On the other hand, it feels that the very symptoms that plague my every waking moment continually hold me hostage in a prison that I call home. 

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

Neither is being on disability a life of luxury. I still live at home with my parents, a fact that I find embarrassing and humiliating. But my health and the severity of my symptoms make being able to live alone and independently perilous. But, even if I did want to live alone, I couldn’t afford to on the amount I receive in disability benefits.

Although I don’t have a job, living with and managing a chronic illness and disability in itself feels like full-time employment. It takes a lot to manage my condition, and everything that comes with it is a constant juggling act. It’s a job where the hours are twenty-four hours a day for three hundred and sixty-five days a year. A job that unfortunately comes with no benefits, breaks or holidays. 

The System Makes Me Feel More Like a Criminal

Instead, I have to navigate a complex and hostile system. One that makes living with a disability even harder. The stress of the claims process is worsened by a system that treats me like a criminal. Like, I’ve had to attend a tribunal in an actual court with guards and judges to prove the existence of my disability and to justify my need for financial help. 

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

For me, the system often feels not designed to ensure everyone is ‘worthy‘, nor is it about reducing fraud. Instead, it’s trying to scare us off. The system wants us to feel overwhelmed, to exhaust ourselves with anxiety and stress, and, in the end, to give up. 

Since finishing this blog post, I’ve heard about my reassessment for PIP. Thankfully, my award entitlement hasn’t changed. I will still receive the enhanced rate for mobility and the standard rate for daily living. The decision is a welcomed relief, especially since I don’t have to attend a face-to-face assessment. But it has also come with guilt, knowing that others haven’t been as fortunate. I feel guilty that other disabled people face a stringent appeals process, whereas I’ve had it easy.

I'm on Benefits, But Stigma Makes Me Feel Ashamed
I'm on Benefits, But Stigma Makes Me Feel Ashamed

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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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