Unspoken Health Kalendar | JBE Mindful Pathways
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Chronic Fatigue Syndrome. Myalgic Encephalomyelitis. Big names, sterile names — as if putting letters and Latin on it makes the living hell of it easier to swallow. But here’s the truth: this isn’t fatigue. This isn’t “tired.” Tired has an off-switch. CFS/ME doesn’t.
This is waking up already broken. This is your body dragging you under like quicksand before you even reach the shower. This is staring at the ceiling because even lifting your arm feels like moving through wet cement. And then, on top of it, this is being told you’re lazy, dramatic, depressed, exaggerating — anything but believed.
Because society loves a struggle it can fix. Cancer gets ribbons. Broken bones get signatures on a cast. But what happens when the wound is invisible, when the blood doesn’t show? People get impatient. Doctors get dismissive. Employers get cruel. Friends get tired of waiting for the “old you” to come back. And you? You start disappearing.
CFS/ME doesn’t just steal energy. It steals language. How do you explain to someone that brushing your teeth is an Olympic event? That a shower can wipe you out for the entire day? That rest doesn’t refill you — it just makes you aware of how hollow you’ve become?
This isn’t weakness. It’s war. Every single day. A war your own body wages against you while the world calls you unreliable, unworthy, unbelievable.
And that’s why this month, when we talk about Chronic Fatigue Syndrome, we’re not handing out sympathy cards or neat little definitions. We’re ripping the mask off what it really is: an unspoken illness, a misunderstood prison, a life sentence that deserves more than dismissal.
Naming the Weight
Doctors call it Chronic Fatigue Syndrome. Researchers call it Myalgic Encephalomyelitis. Survivors call it hell. And that’s the thing — the names don’t matter when the experience is the same: carrying a weight nobody else can see but that crushes you all the same.
Here’s what it isn’t: it isn’t just being tired. Tired means sleep helps. Rest helps. Caffeine helps. With CFS/ME, none of it does. Rest is a thief here — you can sleep ten hours and wake up feeling like you ran a marathon in your dreams.
The fatigue isn’t in your head. It’s in your bones. In your muscles. In your brain, that feels like static has replaced your thoughts. It’s the post-exertional crash that comes not after a marathon, but after taking a shower, making a meal, folding laundry. Normal life becomes an obstacle course where every action demands payment — and the currency is your body shutting down.
Imagine your body is a phone battery that never charges beyond 10%. No matter how long you plug it in, no matter how many apps you delete, no matter how careful you are — it never goes above 10. And if you dare spend too much? You crash to 0 and stay there for days. That’s what CFS/ME feels like.
It’s a life lived in fragments. Start a task, stop. Dream a plan, cancel. Show up once, disappear the next. People call you flaky, unreliable, inconsistent. But the truth is, you’re surviving in a body that demands ransom for every breath you take.
And here’s the kicker: the world doesn’t believe you. Workplaces see the word fatigue and roll their eyes. Families think you’re lazy, dramatic, exaggerating. Friends get tired of canceled plans and start inviting you less. Even doctors — the people sworn to care — will tell you it’s “just stress,” “just depression,” “just in your head.”
But it’s not “just” anything. It’s your body declaring bankruptcy every time you dare try to live like everyone else.
This is the cruelty of invisible illness: if you’re not visibly bleeding, limping, or hooked to machines, people think you’re fine. They can’t fathom that you’re lying in bed because standing up feels like carrying bricks strapped to your chest. They can’t imagine that writing an email, taking a shower, or holding a conversation can leave you wrecked for days.
So you end up trapped in two battles at once — fighting your own body, and fighting to be believed. And sometimes the second battle is worse, because disbelief eats away at your spirit even faster than the illness eats away at your strength.
That’s the weight no diagnosis code captures: not just the exhaustion in your cells, but the exhaustion of constantly having to prove you’re not faking, not lazy, not broken beyond repair.
The Invisible Illness Dismissed
CFS/ME is not just exhaustion. It’s carrying a body that feels hijacked — and then carrying the weight of a world that refuses to believe you.
“You’re just tired.”
“Try yoga.”
“Drink more water.”
“You’re depressed.”
“Maybe you just don’t want to work.”
That’s the chorus survivors hear. Over and over. Gaslighting disguised as guidance. It’s not care — it’s cruelty with a smile.
Our culture doesn’t know what to do with someone who can’t perform. Productivity is the altar, and if you can’t sacrifice yourself on it, you’re branded lazy, weak, a burden. Families whisper it. Bosses imply it. Doctors write it between the lines of their notes. “Failure to thrive.” “Psychosomatic.” They never say “we don’t understand.” They say you are the problem.
And the worst part? The sickness gets doubled. First, by the disease that drains you. Second, by the disbelief that dismisses you. Your body is already breaking, and then the world breaks your spirit for good measure.
The dismissal shows up everywhere:
– In the friend who sighs when you cancel, like your no is an insult.
– In the boss who jokes about “needing a nap too,” as if you’re not crawling just to stand upright.
– In the doctor who orders bloodwork, finds nothing, and hands you back your suffering with a shrug.
– In your own family saying “everyone gets tired” while you wonder if you’ll have energy to shower this week.
This isn’t misunderstanding. This is violence of another kind — the violence of erasure. You’re not just sick; you’re told you don’t exist.
And that’s the cruelty of it: not the fatigue itself, but the way the world insists it’s your fault. The illness is invisible, yes. But the dismissal? That part is loud.
But here’s the dagger no one wants to name: the disbelief seeps in. After years of being told you’re exaggerating, you start to wonder if maybe you are. You swallow their doubt until it curdles into your own. You say “I’m fine” while your body screams. You push harder, work longer, smile wider — all to prove you’re not the thing they accuse you of being.
And sometimes, it goes even deeper. Sometimes, we become our own shamers. We dismiss ourselves before anyone else can. We call it “just tired.” We wave off our own pain. We gaslight our own bodies. Because somewhere along the way, we decided it’s safer to betray ourselves than to face another raised eyebrow, another smirk, another doctor’s shrug.
We self-sabotage in ways the world never sees. We push to scrub the kitchen floor even though we’ll spend the next week in bed, aching and useless. We say yes to dinner with family, knowing we’ll pay for it with three days of brain fog so thick we can’t remember our own sentences. We force ourselves to “walk it off,” to “tough it out,” to drag the laundry basket up the stairs because we’d rather collapse privately than be called lazy publicly.
We lie to our doctors: “It’s not that bad.” We lie to our friends: “I just need some sleep.” We lie to ourselves: “Tomorrow will be better if I just try harder today.” And every lie drives the knife deeper, until we’ve forgotten what truth even feels like in our own bodies.
This is the silent epidemic within the epidemic: people erased so many times they start erasing themselves. Families keep their reputations. Workplaces keep their profits. Doctors keep their ignorance. And patients? Patients lose years, decades, entire lives on the altar of dismissal.
The truth is this: CFS/ME doesn’t just drain the body. The world drains the soul. And until society names its part in that — and until we stop swallowing their lies as our own — patients will keep being sacrificed. Not just to the illness, but to the silence wrapped around it.
The cruelest part of CFS/ME isn’t just the exhaustion — it’s being forced to bury yourself alive while the world insists you’re faking your own funeral.
The Body as Captive
CFS/ME doesn’t just slow you down — it locks you up. Your body becomes the cell, and your mind is left pacing inside, screaming at the bars. You remember what freedom felt like: running without thought, laughing until you fell over, staying up late just because you could. And then the prison door slammed shut.
You wake up exhausted, and it’s not “I didn’t get enough sleep” exhausted. It’s bone-deep, marrow-heavy, “my blood feels like cement” exhausted. Every limb aches like it’s made of lead. And yet your brain still dreams — still imagines trips, projects, possibilities. That’s the cruelest part: the mind soars while the body drags it back down, chaining it to the floor.
Do something as ordinary as grocery shopping and the punishment comes swift: the crash. Hours later, you’re trembling in bed, muscles twitching, head swimming in fog so thick you can’t even form words. A loaf of bread and a bag of apples cost you a week of recovery. People think you’re exaggerating, but you know what it feels like: a hangover that never ends, a flu that doesn’t leave, a body that betrays you at every turn.
And the grief is endless. You mourn the person you used to be — the one who said yes to life without calculation, without fear of the aftermath. You grieve spontaneity. You grieve freedom. You grieve the easy joy of being at home in your skin. And that mourning never gets a funeral, because the world won’t even admit the death.
And what makes the captivity worse is the gaslight inside your own head. You tell yourself: Maybe I’m lazy. Maybe I should push harder. Maybe if I just fight through, I’ll get stronger. But every push is another crash, another reminder that this body isn’t playing by the rules.
It’s not just fatigue — it’s humiliation. Friends ask you to come out, and you weigh the cost like it’s life or death. One dinner out could mean three days down. One “yes” today means ten “no’s” tomorrow. And then comes the shame spiral: explaining, apologizing, excusing yourself for a condition you never asked for, in a body you didn’t choose.
Even family doesn’t get it. They’ll call you dramatic. They’ll call you difficult. They’ll call you selfish for protecting the scraps of energy you do have. They want the old you back — but that person has been stolen, and you’re the one left paying ransom.
So you live half here, half gone. Dreaming of movement, trapped in stillness. Screaming from behind the bars of your own skin, begging the world to see that this isn’t laziness, isn’t weakness, isn’t in your head. It’s captivity. And the worst part is knowing the sentence has no set release date.
Coping, Masking, Surviving
There’s a mask for this illness too. The mask of normalcy. You slap it on when you drag yourself to work, when you show up at a birthday, when you post a picture smiling so people don’t start whispering that you’ve given up on life. You hold yourself upright while your insides are screaming lie down, lie down, lie down.
Pacing becomes survival, but outsiders call it inconsistency. They see you walk around the block on Monday, then watch you barely move on Tuesday, and their judgment is sharp: Well, you did it yesterday. Why not today? As if the body isn’t a ledger, as if every step wasn’t an overdraft you’re still paying interest on.
Coping is strategy, but to the world it looks suspicious. Cancelling plans makes you unreliable. Declining a call makes you cold. Needing naps makes you “childish.” They don’t see the math behind every choice — how many spoons you’re burning, how many you’ll need just to make it through the next day.
So you learn to hide it. To laugh when you want to cry. To smile through vertigo. To say “I’m fine” when fine feels like a joke. Because explaining costs energy too, and you’re already bankrupt.
And here’s the cruelty: masking keeps you “acceptable,” but it also keeps you invisible. They praise you for “looking good today” without ever asking what it cost. They take your performance as proof that maybe you’re not that sick after all.
Survival becomes theater. And the standing ovation goes to the mask, not the person slowly collapsing behind it.
Coping isn’t lavender oil and bubble baths. Coping is rationing showers because standing too long means blacking out. It’s eating cereal for dinner because cooking a real meal would wreck the whole week. It’s telling your kids “not today” with a broken smile because you already burned the day’s energy brushing your teeth.
And yet the world still calls it laziness. Still says you’re not trying hard enough. Still suggests yoga or kale as if your body hasn’t already been hijacked by a war no one else can see.
Masking isn’t pretending to be “okay.” It’s survival math. It’s putting on makeup so people don’t ask invasive questions. It’s cracking a joke to deflect from the fact you can’t remember what day it is. It’s answering “I’m good” when someone asks, because if you told the truth — that your bones feel like cement and your brain is fogged with static — you’d watch their eyes glaze over.
Surviving with CFS/ME isn’t inspirational. It’s brutal. It’s dragging a body that feels like it’s made of lead through a world built for steel. It’s being forced to prove your suffering to doctors, employers, even family, while all you want is to be believed.
And here’s the part no one says out loud: coping, masking, surviving — they save you, yes. They get you through the day. But they also betray you. Because the better you mask, the less anyone sees you. The more you cope, the more people think you’re fine. The more you survive, the less they believe you’re dying inside.
This is the paradox of chronic illness: you keep wearing the mask to protect yourself, but that same mask becomes the reason you’re dismissed. And that dismissal cuts deeper than the illness itself.
The Loneliness of the Unseen
Illness erodes intimacy in quiet ways. Not with screaming fights, but with unanswered texts, half-made plans, the sigh in a partner’s voice when you cancel again. You’re not unreliable—you’re unwell. But the world keeps score like you’re choosing this.
Friends love the version of you that can rally. The one who shows up with mascara on and a practiced smile. They don’t see the price tag—the three days of stillness you’ll owe afterward. They call it flaking. You call it a crash you didn’t consent to.
Family says, “We miss you at Sunday dinner.” They don’t add, “We’re tired of adjusting.” You hear the subtext anyway. You try to explain pacing and PEM and brain fog, but their faces glaze over at the first acronym. You stop explaining. Not because it isn’t real—because the translations cost energy you don’t have.
Doctors can make you lonelier than any empty room. A cold hand on your wrist, a warm voice saying, “Your labs are fine.” Fine becomes a weapon. “Have you tried jogging?” becomes a verdict. You start to dread appointments you begged months to get. You leave with a printout on stress management and the kind of silence that eats you from the inside.
There’s the isolation of the bed—the midday blackout curtains, the hum of the fan, the ache that makes the softness feel like concrete. And there’s the isolation of being disbelieved—the way your name slowly slides off invite lists, the way group chats move without you, the way people say, “We thought you needed rest,” when what you needed was company that didn’t demand performance.
You start pre-emptive disappearing. You say no before they can ask. You mute threads that make your chest tighten. You call it conserving energy, because it is—but it’s also grief. Grief for the easy yeses. Grief for the ordinary life you keep trying to barter back one good day at a time.
Caregivers fracture here too. The partner who loves you and resents the illness. The kid who learns to read your face like a weather report. The parent who brings soup and accidental shame in the same container—“You used to be so active.” You’re carrying your body and their disappointment. It’s too much weight for one pair of hands.
Sometimes the only witness is the ceiling. You lie there counting the beats of your own heart, listening to life happen in the apartment above, the street outside, the world that does not stop. You rehearse answers you won’t have to give, apologies you don’t owe, explanations that will cost you tomorrow.
The empty chair at the party is not absence, it’s illness.
The loneliest part isn’t being alone; it’s being unseen while surrounded. It’s laughing at the right moment because it’s easier than saying, “I’m fading.” It’s posting a good-day photo and watching it be used as evidence against you. It’s the way your body holds the bill for every hour you pretend.
And still—there is a stubborn, private communion: with others like you, with the version of you that remembers sunlight without calculation, with the truth that you are not a burden for being human in a body that asks for gentleness. The world may not know how to sit with that. You are learning to.
The Cracks of Truth
Silence is the soil where dismissal grows. That’s why every time someone with CFS/ME speaks, even if it’s just a whisper typed at 2 a.m. on a message board, it’s an act of rebellion. Advocacy doesn’t always look like rallies or press releases. Sometimes it’s one exhausted body refusing to vanish. Sometimes it’s a blog post that says, “I am still here, even if I don’t look like the me you remember.”
The cracks show up first in hidden corners—online communities, late-night chats, hashtags that string strangers together into makeshift families. For many, the first time they realize this isn’t all in my head isn’t from a doctor, but from another sick person sharing their truth. That recognition—the “me too” across a screen—hits harder than any textbook definition. It says: You’re not alone. Your story is real.
Naming the illness is resistance in itself. Because CFS/ME has been buried under euphemisms—“yuppie flu,” “chronic tiredness,” “stress.” The moment someone says it without flinching, without apology, the mask cracks. It exposes the lie that this condition is just laziness in disguise. It exposes the cruelty of systems built to disbelieve until you collapse in front of them.
Survivors speaking raw truth carry a double weight: their own body’s betrayal, and the burden of convincing others it’s real. But truth-telling, even in fragments, disrupts the silence. A confession in a support group, a tweet that goes viral, a scream on the page—all of it wedges open the door a little wider.
And the cracks spread. Families start listening. Doctors start second-guessing their dismissal. Strangers find words for their own fatigue. The truth leaks out, unstoppable, messy, inconvenient—and that’s exactly how it survives. Because an illness that thrives in silence cannot hold its ground when people refuse to be quiet anymore.
Every crack is a warning to the world: we’re done being invisible.
The truth doesn’t always arrive as poetry. Sometimes it shows up jagged, angry, unfiltered. A patient finally tells their doctor, “Stop calling this stress. I know my body better than you ever will.” A teenager tells their parents, “I’m not lazy, I’m sick, and your disbelief is killing me faster than the illness.” These aren’t polite conversations—they’re eruptions. And eruptions are how silence breaks.
Because the world doesn’t hand CFS/ME patients microphones. It hands them locked doors, rolled eyes, and pamphlets about yoga. So every time someone refuses to stay quiet, it’s a crack in the façade of dismissal. Every Reddit thread, every Instagram reel, every diary entry posted raw—it all adds weight. And weight creates pressure. And pressure breaks systems that were never built to believe us anyway.
These cracks are dangerous, but not for us—for them. For the medical institutions that have thrived on doubt. For the workplaces that measure worth by productivity. For the families that wrapped their shame in denial. The cracks expose their weakness, not ours. Because when enough people shout, whisper, type, or cry the truth, their excuses can’t patch the wall anymore.
And here’s the jagged core of it: truth always leaks. No matter how tight they clamp their hands over our mouths, no matter how many times they stamp psychosomatic on a file, truth finds its way out. In a scream at midnight. In an essay like this. In a survivor saying, “I don’t care if you believe me. I believe me.”
The cracks become fault lines. And once they open, there’s no closing them.
Seeds of Empathy
Empathy doesn’t mean pity. Pity looks down. Pity says “poor you” and then goes back to its own comfort untouched. Presence, though—presence sits beside. Presence says “I may not understand this, but I’m here for the long haul.” That difference can save a life.
For people living with CFS/ME, empathy isn’t about grand gestures—it’s about the small consistencies. The friend who believes without demanding proof. The partner who understands that “I can’t today” doesn’t mean “I don’t want you.” The coworker who pushes back against office gossip when someone whispers lazy. These are the seeds that can actually grow something in soil that often feels barren.
But here’s the hard truth: caregivers fail. Not always out of cruelty, sometimes simply out of exhaustion or ignorance. A spouse who can’t reconcile that their partner is bedridden three days after a simple walk might lash out: “You were fine yesterday, what changed?” A parent who believes in tough love might push their child to “build stamina,” not realizing that every push deepens the crash. A doctor, trained to treat what can be measured, shrugs when the bloodwork comes back “normal” — and that shrug lands heavier than any diagnosis.
Ignorance wounds. It isolates. It turns the sufferer into both patient and teacher—forced to explain, again and again, why their body betrays them in ways science hasn’t caught up to. That teaching is its own burden. Having to advocate while you can barely stand is like being asked to build the lifeboat while you’re already drowning.
And yet, some caregivers learn. They stop asking “Why aren’t you better yet?” and start asking “What helps today?” They stop measuring love by productivity and start measuring it by presence. They learn that empathy means listening without fixing, showing up without demanding performance, and staying even when the answers are messy or repetitive.
Communities can learn too. Churches, schools, families—every group that prizes productivity and attendance over humanity has a choice. They can keep worshiping at the altar of “push through”, or they can start listening to the body and its limits. Real empathy is patient, flexible, unglamorous. It doesn’t shame the canceled plans or the third nap of the day. It says, “I see you. I’ll walk at your pace.”
Because empathy doesn’t cure CFS/ME. But it makes the weight less solitary. And sometimes, knowing you don’t have to carry it alone is the most powerful medicine anyone can give.
The Weight We Carry Together
CFS/ME doesn’t bow out politely. It lingers. It intrudes. It changes the rhythm of your days, the way you measure time, the way you measure yourself. It takes the simplest things—showers, groceries, phone calls—and makes them mountains. And then, to make it worse, the world looks at you as if you’re lazy for not climbing them faster.
There’s no tidy ending here. No “but look how strong they are!” Because strength isn’t the point. Survival is. And survival doesn’t always look pretty. Sometimes it looks like resting in the middle of the day without apology. Sometimes it looks like saying “no” again, and again, and again. Sometimes it looks like letting the dishes sit, the texts go unanswered, the invitations pass by—not because you don’t care, but because your body left you no choice.
And if you’re living it, hear this: you don’t owe anyone proof of how hard it is. You don’t need to defend your exhaustion. You don’t need to make it look palatable so others can digest it more easily. You are allowed to rest. You are allowed to take all the space you need. You are allowed to simply be.
Because the truth is, this isn’t just your weight to carry. It’s ours, too. If we live in the same families, the same communities, the same society, then your struggle should not be invisible. We have a responsibility to see you, to believe you, to show up in the small, quiet ways that say: I’ve got your back.
And that’s where this month’s Kalendar leaves us—not with perfection, but with presence. Not with platitudes, but with truth. We don’t talk about this enough. But here, we will.
Lean Into Support — Resources for the Journey
Living with CFS/ME can feel isolating, but you are not alone. If you need community, guidance, or someone who understands, here are trusted places to start:
- Solve M.E. — Advocacy, education, and support for those with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.
- #MEAction — A global grassroots network pushing for visibility, justice, and community for people with ME/CFS.
- ME Association (UK) — Resources, helplines, and research updates dedicated to supporting people with CFS/ME.
- Health Rising — Patient-centered articles, research summaries, and lived-experience reflections on ME/CFS and related conditions.
(These are global or U.S./U.K.-based resources; if you’re outside these areas, #MEAction and Solve M.E. can connect you with local support and networks.)
With grace, grit, and a love that refuses to quit.
Keep showing up—even when it feels like no one’s listening.
Your voice is powerful. Your story is breaking chains.
From one storm survivor to another—
With strength and softness,
~ JBE Mindful Pathways
Wellness Advocate | Writer | Mother | Still Learning, Always Loving
📚 Explore more empowering stories like this in the Unspoken Health Kalendar collection—where overlooked truths find a voice, and healing begins with awareness.
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