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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
Graphic showing a person sitting up in bed at night with their head in their hands, appearing distressed and unable to sleep. Below the image, text reads, “Painsomnia: What it’s like lying awake with chronic pain,” followed by “brainlesionandme.com
Purple-toned promotional image of a person sitting on the edge of a bed at night, knees drawn up, suggesting discomfort and sleeplessness. Overlaid text reads “Painsomnia” and “What’s it like lying awake with chronic pain,” with “brainlesionandme.com” at the bottom






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

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

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

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

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

Fatigue: The Most Difficult Symptom To Withstand

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

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

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

Fatigue Is So More Than Just Being Tired

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

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

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

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

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

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

My Bed is Both A Comfort And a Prison

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

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

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

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

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

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

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

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

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

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

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

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

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

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

"Although I experience brief moments of respite, I still feel its presence like a malevolent shadow waiting in the wings, ready to attack." Share on X
Fatigue: A More Fitting F-word For My Chronic Life
Fatigue: A More Fitting F-word For My Chronic Life
Fatigue: A More Fitting F-word For My Chronic Life
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Looks like a scrapbook with three polaroid photographs (two at the top and one on the bottom right side). To the left of the bottom photo says 'Joy existen even if my memories were not free from pain.' Underneath has the blog website brainlesionandme.com
In Chronic Illness

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

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

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

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

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

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

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

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

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

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

What ifs: to go or not to go?

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

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

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

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

My most treasured memories were not pain or symptom-free

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

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

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

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

Symptoms lingered, but joy lingered, too.

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

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

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

"But even sometime later, symptoms lingered, pushing my body into a debilitating flare. But joy and exhilaration lingered, too." Share on X
Joy Existed Even if My Memroes Were Not Free From Pain
'Joy existed even if my memories were not free from pain.'
'Joy Existed Even if My Memories Were Not Free From Pain.'
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A smiling woman taking at dusk in a field of sunflowers. Text at the bottom reads Why I'm Not Faking Being; I'm Faking Being Well
In Chronic Illness

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Accusations of Faking My Illness Is Not Only Limited To IRL

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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