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Cover image showing a cruise ship sailing through a dramatic Norwegian fjord, with mountains and a calm sea beneath a cloudy sky. The title reads “Life at Sea: Finding Hope on an Unpredictable Journey.”
In Chronic Illness

Life at Sea: Finding Hope on an Unpredictable Journey

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As the ship eased into port, passengers gathered eagerly at the gangway, ready to explore another new destination. I, however, could only watch from my balcony, knowing that my body would anchor me to the ship that day. The world beyond the gangway remained just out of reach. I knew that feeling all too well. In that moment, I realised that travelling with chronic illness has much in common with life at sea. Both have taught me that no matter how carefully I plan, forces beyond my control can still alter a journey’s course.

Stunning scenery of the Norwegian Fjords and the ripples from the ship as it os sailing away
"I can plan my journey, but I can never control its course." Share on X

Beneath The Surface

Looking out across the vast ocean from my balcony, I found myself drawn to what lay on the surface: the gentle swell of the waves, the endless horizon, and especially the sunlight dancing across the water. It was a calming, mesmerising sight, yet the surface told only a fraction of the story. Beneath it lay an unseen world, hidden from view but influencing everything above. The more I watched the sea, the more I recognised something of myself in it.

Life with chronic illness often feels much the same. People see the smile, the photographs and the moments I manage to enjoy. But what they don’t see is everything beneath the surface: the pain that refuses to relent, the dizziness that unsettles my balance, the weakness that quietly limits my independence, and the exhaustion that shadows even the happiest moments. 

My symptoms didn’t stay behind when I went on holiday. They travelled with me through every step, decision, and mile of the journey. Yet my photographs revealed only a small part of my story. 

Travel-themed graphic showing a cruise ship balcony overlooking a blue sea and mountainous coastline, with photographs of fjords arranged across a travel map alongside sunglasses. Text reads, “My symptoms didn’t stay behind when I went on holiday. They travelled with me through every step, decision, and mile of the journey. Yet my photographs revealed only a small part of my story.”
"My symptoms didn’t stay behind when I went on holiday. They travelled with me through every step, decision, and mile of the journey." Share on X

That is one of the strange contradictions of travelling with chronic illness. I can be somewhere beautiful, surrounded by everything I have looked forward to, while my body reminds me of its limitations 

When the Journey Changes

The sea reminds me I can plan an itinerary, but I can’t always follow it.

On a cruise to Norway and Iceland many years ago, the weather prevented the ship from entering two ports. Two excursions I had eagerly anticipated disappeared from my itinerary almost as quickly as they had appeared. 

No one caused the problem, and I couldn’t change it. The sea had made its decision, and I had no choice but to accept it.  

I remember the disappointment keenly, not just because of the places I didn’t get to see, but because of the experiences I had imagined and quietly mourned as they slipped away.

Living with chronic illness has taught me that my body can be just as unpredictable. Sometimes the weather changes a journey’s course. Other times, pain, weakness, or dizziness keeps me from stepping ashore. 

Photograph of a woman wearing a sun hat sitting on a balcony overlooking a calm blue sea at sunset. A dark brushstroke overlay contains the text, “Living with chronic illness has taught me that my body can be just as unpredictable.”
"Living with chronic illness has taught me that my body can be just as unpredictable." Share on X

Over the years, I have missed excursions I had carefully planned, remained on board while others explored, and watched beautiful places drift past from the quiet of a balcony. 

The grief isn’t simply about missing a destination. It is about missing the opportunity to create memories there. Something I had looked forward to may now exist only in someone else’s photographs and stories. 

Watercolour-style postcard showing a woman seen from behind on a cruise ship balcony, looking across the sea towards the dramatic Norwegian fjords, with mountains, snow-capped peaks and a waterfall in the distance. To the right of the image is text which says "Something I had looked forward to may now exist only in someone else's photographs and stories."
Not every destination becomes a memory of my own. Sometimes, I have to watch from a distance as others make the memories I had hoped to create.
"The grief isn’t simply about missing a destination. It is about missing the opportunity to create memories there. Something I had looked forward to may now exist only in someone else’s photographs and stories." Share on X

I have learned that disappointment comes in many forms. Sometimes, it arrives as a storm rolling across the horizon. At other times, it arrives quietly, in the form of a body that simply cannot do what my heart longs for. 

Learning to Adapt

Both the sea and chronic illness have taught me the importance of adapting to changing conditions.

At sea, a change in weather conditions can mean altering the route, changing the day’s plans, or waiting for conditions to improve. I remember one cruise when the ship couldn’t dock at a port on the itinerary. An unexpected outbreak of food poisoning on another ship had made the port unavailable. The captain quickly adapted and diverted the ship to a different port. 

I have had to learn to do something similar with my own body. 

Sometimes adaptation means accepting that I cannot step ashore and finding other, quieter ways to enjoy the day. Other times, it means slowing down, resting when I would much rather be exploring, or accepting that I may only manage part of what I hoped to do. Sometimes it means using my wheelchair instead of relying on my crutch. 

Picture of a sea with the quote 'Sometimes adaptation means accepting that I cannot step ashore and finding other, quieter ways to enjoy the day.' and the social media handle @serenebutterfly underneath

None of this comes easily. 

Frustration still swells whenever my body places limits on experiences I have eagerly awaited. There is still a part of me that wants to push through, to pretend I can manage what I had planned and refuse to let my symptoms dictate my day. 

"There is still a part of me that wants to push through, to pretend I can manage what I had planned and refuse to let my symptoms dictate my day." Share on X

Sometimes, that way is surprisingly small.

 It might mean spending an afternoon on the balcony watching the coastline pass by, taking photos from the ship, or simply resting without feeling guilty. I imagined a different experience when I first planned the trip, but I still treasure the memories I made.

Listening to My Body

Spending time at sea has also taught me to notice the smallest changes. 

I’ve noticed the creaking sounds of the ship as the waves begin to swell. The hangers tap together as the sea beneath my feet becomes increasingly turbulent. Around me, chairs on the balcony shift and slide as the wind intensifies, while the sky darkens dramatically before rain, thunder, and lightning arrive. Just this year, I saw this in Hamburg from our balcony window: a sudden flash of lightning, followed by a violent rumble of thunder. Then the heavens opened, and the streets below were soon awash with rain. 

Picture of Hamburg with red brick building and a church spire in the distance
A picture of Hamburg before the heavens opened!

Sometimes the change is obvious. Other times, conditions shift quietly, long before I am consciously aware of what is coming. 

Living with chronic illness has made me just as observant of my own body. 

"Living with chronic illness has made me just as observant of my own body." Share on X

Over time, I have learned to recognise the earliest signs that a difficult day lies ahead: a little more fatigue than usual, legs that feel heavier than the day before. Dizziness can suddenly intensify. Sometimes pain starts as a whisper before it demands my attention.

Other people may never notice these changes. For me, they can be the difference between managing a day and pushing myself beyond what my body can safely handle. 

Listening to those warning signs is not always easy. Sometimes it means accepting that the journey I planned is no longer the journey I can take. 

The acceptance can feel like a loss. 

But it can also be an act of kindness towards myself. 

Still Part of the Journey

Years ago, I wrote about feeling trapped within the four walls of my home, longing to be part of the world beyond them. Cruising reminded me that changing the scenery doesn’t necessarily change the reality of living with chronic illness. 

"Cruising reminded me that changing the scenery doesn’t necessarily change the reality of living with chronic illness." Share on X

Sometimes my prison had portholes instead of windows, and a balcony instead of a garden. 

Photograph of a cruise ship cabin with a porthole window and open balcony overlooking blue sea and snow-capped mountains. Text reads, “Cruising reminded me that changing the scenery doesn’t necessarily change the reality of living with chronic illness. Sometimes my prison had portholes instead of windows, and a balcony instead of a garden.”

Yet it also reminded me of something else. 

Even when I couldn’t step ashore, I was still part of the journey. 

The sea continued to unfold before me. The coastline still slipped past. The light changed across the water. The ship carried me towards places I had dreamed of seeing, while life continued around me. 

In those ever-changing waters, I found reflections of my own life that I may never have noticed if I had remained on land. 

Perhaps that is why life at sea seems so familiar to me. 

Beautiful scene in the Norwegian Fjords with the mountains perfectly mirrored on the water
A scene in the Norwegian Fjords as it is docked in a port. To the left of the picture is buildings in the small town
Scene in the Norwegian Fjords with a cruise ship in the distance
Beautiful scene of the Norwegian Fjords with snowtop moutains and blue skies and clouds overhead

Every journey begins with hope, but neither the ocean nor my body promises me the destination I imagine. Sometimes those hopes become cherished memories that I look back on with quiet gratitude. Other times, they remain hopes because the sea, or my body, quietly changes course before they can become memories. 

But some days, my body is kinder. 

Days when I wandered unfamiliar streets and stood in awe at breathtaking landscapes, particularly in Norway. For a little while, chronic illness felt as though it had loosened its grip.

I never take those rare moments for granted.

If anything, living with chronic illness has taught me to savour them more deeply. I know that neither my body nor the sea can promise me another opportunity to experience them. 

Reflections on a Life at Sea with Chronic Illness

Reflecting on the cruises I’ve taken, I know I will never forget the amazing places I have visited. 

But I will also remember the places I didn’t.

Perhaps that is another lesson travelling with chronic illness has given me: I cannot always measure a journey by the places I manage to reach. Instead, I measure it by the moments I find along the way, even when the journey looks nothing like the one I imagined.

"I cannot always measure a journey by the places I manage to reach. Instead, I measure it by the moments I find along the way, even when the journey looks nothing like the one I imagined." Share on X

Life at sea has reminded me that I can control neither the sea nor my chronic illness. Both demand respect. Both require patience. And both ask me to adapt when conditions suddenly change. 

Perhaps that is why, when I look back on my experiences at sea, I feel an unexpected sense of peace. 

Watercolour-style background in shades of blue and green, resembling gently moving water. Handwritten text reads, “The sea has never promised certainty. Neither has my body.”

The sea has never promised certainty.

Neither has my body. 

"The sea has never promised certainty. Neither has my body." Share on X

Yet despite everything, both have carried me further than I once thought possible. 

Graphic featuring a cruise ship sailing through a dramatic Norwegian fjord surrounded by steep, snow-capped mountains and waterfalls. Text reads, “Life at Sea: Finding Hope on an Unpredictable Journey,” with brainlesionandme.com at the bottom.
A tranquil Norwegian fjord reflects snow-capped mountains and surrounding woodland beneath a blue sky. Overlaid text reads “Life at Sea: Finding Hope on an Unpredictable Journey” and “Lessons in living with chronic illness, one unpredictable journey at a time.”
Travel collage featuring three photographs of Norwegian scenery, including steep green mountains surrounding a fjord, snow-capped mountains reflected in a lake, and a cruise ship sailing past a coastal town. The images are arranged on a torn-paper background with a dotted travel route and ship icon. Text reads “Life at Sea: Finding Hope on an Unpredictable Journey.”






















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A yellow background features text at the top in white, bold typeface stating 'The Magic of Hope In Chronic Illness.' Beneath is the sun, bright in the sky, with a pale pink sky, and a rainbow reflected in the water. Near the bottom, the URL of the blog is written in white bold letters with a yellow background matching the top
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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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
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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
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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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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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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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