For many, the greatest struggle of chronic illness isn’t just the pain – it’s invisibility. This is the reality for one woman who battles myalgic encephalomyelitis (M.E), fibromyalgia, and PTSD, all while carrying the weight of a past marked by domestic abuse.
In this powerful personal story, she highlights the invisible struggles of navigating a world that refuses to see those in pain. Every day is a fight against exhaustion, bureaucracy, and a world that refuses to see her. Despite the overwhelming challenges, she continues to push forward, navigating rigid systems that reduce her to nothing more than a number. But she is more than that. She exists, she struggles, and she deserves to be seen.
The invisible pain: living with an chronic illness
I often wake up to a world that feels heavy. Every movement is a reminder of my body, a body that has betrayed me time and again.
Living with myalgic encephalomyelitis and fibromyalgia is exhausting. But my struggles go beyond physical pain. The presence of PTSD and a family history of domestic abuse adds an additional layer of difficulty to my daily life.
Invisible struggles: when the world doesn’t acknowledge your battle with chronic illness
I sit in my small living room, papers scattered on the table—official documents, stacked like silent judgments around me. I’m trying to make sense of inflexible rules, rigid procedures, and suffocating constraints that seem to mock my every attempt to navigate them.
They don’t understand the toll this takes on someone like me – someone who’s invisible in their eyes as if my struggles with chronic illness are just another inconvenience to be brushed aside.
I remember a time I called someone about taxation. The voice on the other end was cold, robotic-like it had been drained of any trace of empathy. ‘We can’t make exceptions, but you need to pay instalments on time,’ they said, their words clipped and rehearsed as if my life was no more than a row of numbers on a spreadsheet.
It’s hard to explain to people why I struggle with simple tasks—why something that seems so straightforward to them feels like a mountain I can’t climb, each step more exhausting than the last.
Each day is a battle. The weight of my chronic illness makes it tough to get out of bed, let alone deal with bureaucratic nonsense. I’ve tried reaching out for support, but it feels like shouting into a void.
They don’t know the nights I spend awake, unable to process what they’ve said. They don’t know the nights spent, replaying moments that should have never happened.
Drowning in paperwork: the bureaucracy that makes suffering worse
The sun peeked through the blinds, casting strips of light across the worn-out carpet. The room felt stale, the air thick with the scent of last night’s dinner. I rolled over, my body protesting with every inch of movement. My eyes squinted at the clock on the nightstand – another morning where the numbers seemed to mock me. Nine o’clock, it read, as if it were a reasonable time to expect someone to rise and greet the day. But for me, each day is a negotiation with pain.
With a deep breath, I pushed myself upright. The effort was immense, and the world swam for a moment. The walls closed in, whispering the familiar litany of despair. But I had a mission today: to delegate the mountain of paperwork that threatened to swallow my small space to someone else. It was a daunting task, one that I faced with grim determination.
The sunlight pierced my eyes, and I felt a surge of anger at the cheerfulness it brought to the room. It was a stark contrast to the heaviness that had settled into my bones, the weight of pain that clung to me like a second skin.
I reached for the blind’s string with a trembling hand, pulling it closed to banish the offending light. The room plunged into a more comforting dimness, a soft embrace that whispered of rest – but rest was a luxury I couldn’t afford today.
My mind, foggy from the ongoing battle that my body wages daily, struggles to form coherent thoughts. Words eluded me, like slippery fish that dart away each time I reach for them. I knew what I needed to say, but my mouth felt as though it was filled with cotton. Forming sentences in my head was a challenge, let alone speaking them aloud. Yet, I must speak them. The council tax department is indifferent to my pain and the labyrinthine fog clouding my mind today. They have their rules, deadlines, and expectations.
Every time I see bills instead of support, my heart sinks. The cold, unfeeling letters demanding payment, and the phone calls that end with a click instead of compassion, all serve as stark reminders that the world outside doesn’t understand. This struggle is not just physical; it involves the cognitive and mental gymnastics necessary to navigate complex systems and the toll of feeling overwhelmed. It feels as though I’m shouting into a void, my voice echoing back their relentless words: “You need to pay instalments on time.”
A voice in the darkness: finding support in those who see me
I gather my thoughts, trying to formulate the perfect sentence to explain my plight, to make them understand. But words are fickle friends today, slipping through the gaps in my brain like water through a sieve.
I know what I need to convey, but when I attempt to speak, the words come out jumbled, a mess of syllables and half-formed thoughts. It’s as if my mind is racing ahead of a body that can’t keep up, the gap between intention and action a chasm too wide to cross.
With a sigh, I decide to delegate the battle. My caregiver, the one person who has witnessed the storm clouds gathering in my eyes when the pain becomes unbearable, steps forward. My daughter becomes my voice when mine falters. She agrees to take over the tax debacle, her voice steady and calm amidst my frantic ramblings. “I’ve got it,” she assures me, and I feel a small weight lift from my shoulders.
She turns her attention to the email sent weeks ago, detailing the payments made and requesting a reprieve. Yet, the silence is deafening, the inbox as empty as my hope for understanding.
Together, we read and reread the automated response: “Thank you for your email, we aim to respond within 10 working days,” taunting me with its emptiness. It’s like screaming into the void, expecting an answer, only to be met with the echo of my own despair.
In these moments, I am grateful for her unwavering support. Her presence is a beacon of resilience, guiding, slowly through the labyrinth of bureaucratic indifference. Together, we confront the silence, holding on to the hope that, eventually, our voices will break through.
Breaking the silence: fighting to be heard in an indifferent system
The days drag on, the pain in my body mirroring the frustration in my heart. And just when I think the storm has passed, the thunder of another letter strikes. My chest tightens, a vice squeezing the air out of my lungs. I’ve been chased by the council tax once again, their robotic system is oblivious to what was sent. The words “debt collectors” slap me in the face, a cold, hard reality that sends me spiralling.
I take a deep breath and force myself to sit up straight, the chair groaning beneath me. My carer and I gather the scattered papers, the evidence of my struggle laid out in black and white. Each page is a battle scar, each number a reminder of the war I’ve been fighting alone for too long.
“One day, my words will make a difference,” I murmur to myself, willing it to be true. It’s a mantra that gets me through when the weight of the world feels too heavy.
I imagine a world where people like me aren’t just numbers, but humans with stories that matter. Until then, I continue to rise, against what threatens to swallow me whole.
If you’ve ever felt unheard in your struggle with chronic illness, bureaucracy, or the weight of an invisible battle, know that you are not alone. Stories like these deserve to be told, and voices like yours deserve to be heard.
Have you faced similar challenges? How have you navigated the barriers that seem designed to overlook those who need support the most? Share your experiences in the comments box, on social media or contact us to share your personal story.