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Graphic on a navy blue background with large white text reading, “What’s it like lying awake with chronic pain.” A vertical sidebar says “Painsomnia.” Below, a photo shows a person sitting on a bed at night with their face in their hands beside a lit bedside lamp, conveying distress and sleeplessness. Text at the bottom reads “brainlesionandme.com.”
In Chronic Illness

Painsomnia: What It’s Like Lying Awake With Chronic Pain

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Painsomnia: a form of insomnia caused by chronic pain, where exhaustion meets a body that refuses to rest 

What Painsomnia Feels LIKe at Night

3:17 glows from my bedside clock, mocking me in the darkness. It’s a time I’ve come to know intimately, not because I’ve been out living, but because painsomnia, that insomnia caused by chronic pain, keeps me awake when the rest of the world sleeps. I lie in bed, the stillness and quiet around me, yet inside my body, everything feels loud; every ache, every pulse, impossible to ignore. It’s a contradiction I live with nightly; a body desperate for rest, yet unable to find it because of pain, and so I find myself here again, in painsomnia. 

"A body desperate for rest, yet unable to find it because of pain." #Painsomnia Share on X
Illustrated graphic on a dark blue background with yellow text reading, “What is Painsomnia?” White text explains that painsomnia is a form of insomnia caused by chronic physical pain, where exhaustion meets a body that refuses to rest. Below, a person lies awake in bed looking distressed beside a digital clock showing 01:30 PM. Decorative stars and doodles surround the scene, and the handle “@serenebutterfly” appears at the bottom.

When The World Goes Quiet, My Body Doesn’t

As the night deepens, everything around me grows quieter, and that quiet only seems to amplify what I feel, which is often the hardest part of painsomnia. I don’t know if the pain actually worsens, but it always feels like it does at night. During the day, I can almost pretend I’m fine, my pain blending into the background of everything else. 

"The rest of the world sleeps, and I lie awake negotiating with my own body." #Painsomnia Share on X

Because during daylight, there is always something to do: errands to run, emails to answer, dishes to wash. Conversations fill the gaps. There are places to be, books to read, and television to switch on and lose myself in. Distractions are everywhere, and for a while, they soften the edges of what I feel. But at night, when all of that falls away, there’s nothing left to buffer it. 

"Distractions are everywhere, and for a while, they soften the edges of what I feel. But at night, when all of that falls away, there’s nothing left to buffer it." Share on X
Illustration on a dark blue background of a person sitting wrapped tightly in a pink blanket. Above them, the time reads “3:17 AM” and a battery icon says “LOW.” White text below reads, “The rest of the world sleeps, and I lie awake negotiating with my own body.”

There’s no background noise from the world beyond my window, no text messages arriving, no sound beyond my bedroom at all. There is only silence, and in that silence, my pain expands, growing louder. I can almost feel it stretching itself out, claiming space, demanding my full attention. Without anything to distract me, even the smallest ache becomes impossible to ignore. 

Time Moves Differently When You Can’t Sleep

I glance back at the clock, watching the minutes change slowly. Time stretches in a way it never does during the day. That is the strange rhythm of painsomnia. Each minute slowly drags itself forward while I lie there, fully aware of every second I’m still awake. Ten minutes feels like an hour. An hour feels like a small lifetime. I close my eyes, turn onto my side, adjust the pillows once more, hoping this time I might actually find sleep. For a moment, it almost feels possible. But then it slips away again. A dull ache creeps back in, then sharpens, pulling me back into full awareness of my body. I start over again: shifting, adjusting, trying to outmanoeuvre pain that refuses to yield.

"Ten minutes feels like an hour. An hour feels like a small lifetime." #Painsomnia Share on X
Graphic on a dark blue background with white handwritten text reading, “Ten minutes feels like an hour. An hour feels like a small lifetime.” On the right side, a large partial illustration of an alarm clock emphasizes the slow passage of time during sleeplessness.

The Loneliness of Painsomnia

It’s in these quiet moments that I feel the loneliness of painsomnia begin to settle in. The rest of the world is asleep, and instead, I lie wide awake, feeling like the only one still up. The house is still, peaceful, and as I lie, I become aware of every small sound; the faint creak of the pipes, the rain tapping on my bedroom window. They’re the only signs of life, the only company I have. I feel a strange kind of isolation, exhausted yet awake, alone in a body that refuses to settle. 

"I feel a strange kind of isolation, exhausted yet awake, alone in a body that refuses to settle." Share on X

It makes me more aware of everything. I find myself listening for any kind of sound, just to remind myself that the world is still there beyond my room. 

Illustration on a dark blue background with white text reading, “I feel a strange kind of isolation, exhausted yet awake, alone in a body that refuses to settle.” Below the quote is the handle “@serenebutterfly.” The image shows a person sitting with their head resting on their hand, appearing tired and withdrawn, emphasizing loneliness and sleeplessness.

I look for anything to take my mind elsewhere

Sometimes, I reach for my phone, one of the small distractions I use when pain and painsomnia keep sleep out of reach. I fall into the familiar habit of doomscrolling, letting one thing blur into the next just to pass the time, to fill the deafening silence. I try watching something, anything quiet enough not to disturb anyone else in the house, the brightness turned down, the volume barely there. It never seems to help, not in any lasting way, but it gives my mind somewhere else to go for a little while; something other than the pain that won’t leave me alone. 

There’s only so much I can do

Eventually, even that stops working. In frustration, I start the cycle again: shifting, adjusting, trying to find a position that hurts less. By this point, painsomnia has usually been with me for hours, and I’ve usually taken as much pain medication as I can safely take. I know how long I need to wait before I can take anything else, and I find myself weighing up whether it’s worth taking it now or saving it for later, in case the pain worsens. But even then, I’m not sure it will make a difference. 

Illustration of an orange pill bottle tipped over with pink tablets spilling out onto a light beige background. Brown text below reads, “Pain medication doesn’t switch it off. It just lowers the volume.” The handle “@serenebutterfly” appears underneath.

Even then, my pain medication isn’t a magical switch that shuts the pain off. In my life, medication merely lowers the volume. It often turns a scream into a moan. Sometimes, it takes the edge off, but often it doesn’t. There’s no real way of knowing, and that uncertainty becomes part of the night too; another thing to sit with, another thing to wait out. 

The night doesn’t end when the day begins

Eventually, I run out of things to try. I have nothing left but to lie there and wait it out. Sleep feels out of reach, something I can’t quite get to, no matter how tired I am. Instead, the night stretches ahead of me, not as a time for sleep, but as something to endure: hour by hour, minute by minute. 

"The night stretches ahead of me, not as a time for sleep, but as something to endure: hour by hour, minute by minute." #Painsomnia Share on X

How Painsomnia Follows Me into the Day

Yet the exhaustion doesn’t just disappear with the appearance of daylight. It lingers, settling into every facet of my day. It settles into conversations, into small tasks, into movements that should feel simple, but instead feel heavy and cumbersome. Morning arrives whether I’ve slept or not, and painsomnia leaves its mark either way. And my routine starts all over again. I wake up. Then I take my medication. I prepare myself for the day ahead and finish the morning chores. Still, the exhaustion from the night lingers. I carry the weight of it through the rest of the day. That weight goes beyond ordinary tiredness.

Illustration of a person lying exhausted on a couch, one arm over their forehead, suggesting fatigue and discomfort. A pair of shoes sits on the floor nearby. On a dark blue background, white text reads, “Painsomnia is more than sleeplessness. It follows you into the day.”
"Painsomnia is more than sleeplessness. It follows you into the day." Share on X

This is what painsomnia really is. It’s not just a bad night’s sleep or the occasional restless evening. It’s a relentless cycle: night after night of trying, adjusting, waiting, enduring, followed by days spent carrying its aftermath. Much of it happens behind closed doors, in the quiet hours when the rest of the world is asleep, unnoticed and often unspoken. Living with painsomnia means repeating this cycle night after night. And I know that when night comes again, I’ll be back there. If you’re there too, you’re not the only one still awake. 

Illustration of a person sitting hunched forward at night under a dark, starry sky, appearing tired and in discomfort. White text above reads, “If you’re awake in pain tonight, you’re not the only one still awake,” conveying a message of shared experience and reassurance.
"If you’re awake in pain tonight, you’re not the only one still awake." #Painsomnia Share on X "When night comes again, I know I’ll be back there." #Painsomnia Share on X
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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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This Body Betrays Me is in large font at the top middle of the page. On the side of it reads Disability and Its Hidden Anger. The bottom shows a black and white photo of a woman sitting by a window with her arms clutching the top of her head
In Chronic Illness

Disability And Its Hidden Anger: This Body Betrays Me

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I carry anger like ARMOUR

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

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

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

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

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

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

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

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

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

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

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

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

"This body may not always feel like home, but it's still mine." Share on X
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In Chronic Illness

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Accusations of Faking My Illness Is Not Only Limited To IRL

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I’m Fine: A Lie Illness Makes Me Tell

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‘I’m fine.’ Two small, simple words I speak no matter what when asked how I am. But it’s also an extremely misleading answer, if not an outright lie. Because in reality, I am never fine. I never feel fine; my chronic illness’s symptoms ensure that. Therefore, I’m fine is a lie that chronic illness makes me tell daily.

"But it's also an extremely misleading answer, if not an outright lie. Because I am never fine, I never feel fine; my chronic illness's symptoms ensure that. Therefore, I'm fine is a lie that chronic illness makes me tell." Share on X

I frequently encounter some variation of ‘How are you?’. It is a question I hear every day from all different types of people; friends, family, acquaintances, and even the occasional stranger. For most people, it is an easy question to answer. But for me, it makes me panic as I struggle to find the words to respond. I don’t want to feel like a misfit or a medical curiosity. I don’t want my illness to supplant who I am as a person. So it’s easier to reply with a frank, non-descript “I’m fine.”

How are You? I'm Fine
"But for me, it makes me panic as I struggle to find the words to respond. I don't want to feel like a misfit or a medical curiosity. I don't want my illness to supplant who I am as a person. So it's easier to say, "I'm fine." Share on X

But that one straightforward question triggers so much internal conflict. I don’t want to lie about how I am. But if I’m having one of my rare better days, I don’t want that one good day to give the mistaken impression that I’m improving or “cured.” Not because I want attention or sympathy, but because I’m only too aware of how many people living with invisible, chronic illnesses struggle with being taken seriously or believed. I don’t want my response to a straightforward question to reinforce any unfavourable generalisations.

On the other hand, when asked how I am on one of my many worst days, I don’t want pity. Nor do I want to be seen as a bore, as someone who only talks about their illness.

That’s why I, more often than not, may respond with a simple ‘I’m fine.’

It Takes on A Different Meaning When Living With Chronic Illness

Many symptoms that I live with: the pain, weakness, and dizziness are constant, affecting every second of my life. Other symptoms – the falls, the visual disturbances, and vertigo that sends my entire world in a spin are frequent visitors that appear much more regularly than I would like. Because of this, I’m never fine; I never feel fine and haven’t for a long time. I’m surprised that the word is still in my vocabulary.

What ‘fine’ means is that I’m never symptom-free; every day, I struggle with the knowledge that it might be the case for the rest of my life. It means I constantly live in survival mode, existing, not living, and never being able to leave it. It means that I’m fighting to maintain a positive, upbeat demeanour as much as possible, but there are moments every day when it feels too damn hard. It’s a general term for I feel like death, but I have still exerted myself to get up and dressed to go somewhere that is not within the same four walls I usually inhabit.

Definition of I'm Fine
"What 'fine' means is that I'm never symptom-free; every day, I struggle with the knowledge that it might be the case for the rest of my life. It means I constantly live in survival mode, existing, not living, and never being able… Share on X

An I’m fine, and a smile masks the exhaustion, hopelessness and heartbreak. All this constantly pursues me, leaving me unable to escape the clutches of chronic illness. It may mean that although I wear a smile, I’m trying to make it through the day without crying. It also means I’m in tremendous pain, but I’ve become accustomed to hiding it.

I reply, ‘I’m fine,’ despite my legs shaking beneath me. The constant weakness makes them contort as I fear they will crumple any second, leaving me self-conscious once again as I lie on the ground below. Still, I say, ‘I’m fine,’ despite the ongoing grief I battle, being constantly sick and having a body that keeps redefining itself.

"Still, I say, 'I'm fine,' despite the ongoing grief I battle, being constantly sick and having a body that keeps redefining itself." Share on X

Fine Is Not Always Fine

I’m fine has become code for ‘I’m not fine.’

Sometimes, it’s easier to pretend I am OK than to discuss chronic illness and its effect on me and my life. Despite much research and learning about the disorder that affects me considerably, the brain continues to be an enigma.

Trying to get others to understand my invisible chronic illness and how it impacts my life is mission impossible. But so much of the disorder I live with is shrouded in mystery, the unknowns heavily outweighing the knowns. I have no idea why the symptoms affect me as they do or why they seem to be set off by particular triggers. If I cannot understand it, how could I ever explain it to someone else to make them grasp what I go through? So, it seems easier to pretend I’m fine and put it off completely.

"If I cannot understand it, how could I ever explain it to someone else to make them grasp what I go through? So, it seems easier to pretend I'm fine and put it off completely." Share on X

It isn’t easy to find the words to convey just how severe and debilitating the symptoms are. Or the struggle I endure every day to withstand even another second of life with pain and illness.

I'm Fine A Lie that Chronic Illness Makes Me Tell

I’m Fine: A Lie Chronic Illness Makes Me Tell

But chronic illness is ever-present in my life, snatching away my vitality, health and mobility. It steals time, events and moments. It’s easy to let something ever-present hijack every thought and conversation. But, stating that I’m OK even when I’m anything but allows me to focus on things that make me forget my life with chronic illness, even for a short time. Because sometimes I want a break from having to talk about it. I would rather talk about something, anything else.

"It's easy to let something ever-present hijack every thought and conversation. But, stating that I'm OK even when I'm anything but allows me to focus on things that make me forget my life with chronic illness, even for a short… Share on X

I’m bored of chronic illness, so I’m sure others are sick of hearing about it too. Frankly, complaining about it never makes me feel better; if anything, it makes me feel worse. But most of all, I use it because I constantly feel weak, forced to confess that I’m still sick and not coping well yet again. My solution, therefore, is to keep it to myself. I don’t want others to see me as someone who is constantly unhappy or that person who complains all the time.

"But most of all, I use it because I constantly feel weak, forced to confess that I'm still sick and not coping well yet again. My solution, therefore, is to keep it to myself." Share on X
Fine Is Not Fine

I like to think of myself as someone honest and authentic. But often, when I say ‘I’m fine,’ it is a lie that chronic illness makes me tell. Because, usually, fine does not always mean fine.

"But often, when I say 'I'm fine,' it is a lie that chronic illness makes me tell. Because, usually, fine does not always mean fine." Share on X
I'm Fine A Lie Chronic Illness Makes Me Tell
I'm Fine A Lie That Chronic Illness Makes Me Tell

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