04/08/2025
The Life We Didn’t Choose
— for those living with ME/CFS
It’s a life no one asked for,
One we suffered through before even knowing its name.
A life of quiet battles and silent shame,
Where disbelief is louder than pain.
We’re judged before we’re heard,
Dismissed with a shrug —
As if illness needs a visible wound,
As if rest is weakness, not survival.
Those who claim expertise speak — but not from here,
Not from this bed, this brain fog, this fear.
They speak without experience, unprepared to listen.
We speak in tremors, in pain, in fragments of energy.
They speak of moods.
We speak from the depths of fatigue.
If we rest, we’re lazy.
If we try, we’re lying.
“Snap out of it.”
“There are others worse off.”
“It’s all in your head.”
As if that makes it easier.
When we walk, or smile, or simply show up,
It’s not health — it’s performance.
An act played on a body
Crumpled beneath the costume.
We do that thing —
That visit, that email, that shower —
Not for pity, but to feel like who we were
Before this illness stole so much.
It’s not self-pity — it’s a plea
For kindness. For understanding.
But then comes the crash:
PEM — the reckoning.
Everything else is cancelled.
The migraines. The pain.
The flu-like symptoms × 100.
Eating is a chore.
Drinking, an effort.
Talking feels impossible.
Even light feels violent.
So we close the door —
Not to shut you out,
But to survive,
So we might return another day.
Friends drift.
Invitations stop.
Mental health frays.
And still they say —
Unkind things, without knowing.
How do we feel joy,
When our illness gets no funding,
No treatment,
No cure,
No justice?
It took our work,
Our freedom,
Our rhythm,
Our lives.
And now strangers, colleagues, even loved ones
Take our dignity
With unfounded judgments.
So next time you say,
“They don’t look sick,”
“They managed that thing — they must be fine” —
Remember:
You see the moment,
Not the price.
Not the crash.
Not the dark room.
Not the silence.
Not the curled-up body
Just trying to stay alive.
M.E Matters ME Association Action for ME Tiverton Wellbeing Unite Carers in Mid Devon MECFS Collaborative Research Center at Stanford University
