ME/CFS is the merciless unravelling of your humanity — where even the simplest acts, like speaking, sitting up, or thinking, become impossible mountains to climb.
In its severe form, it traps you in darkened rooms, silences your voice, and steals the very sensations of living. A body so broken that even breathing feels like a battle. Every whisper of energy is rationed for the barest essentials — and still, it is never enough. Friends disappear. Doctors doubt. Strangers call you lazy, dramatic, hysterical. Meanwhile, you are drowning in a body that has forgotten how to live — but remembers how to hurt.
Yet while your body shatters under the weight of symptoms — crushing fatigue, searing pain, brain fog so thick it erases time — the world looks on and says, “You just don’t want to go to work.” They accuse, they doubt, they dismiss.
This is not tiredness. This is not depression. This is cellular collapse, neurological chaos, an agony that defies language. It is not tiredness. It is not just made up in your mind. It is full-body shutdown. It is survival, hour by hour, unseen by a world that demands proof.
And somehow, unbelievably, you endure. You endure without recognition, without understanding, without mercy from the world outside. You are not invisible. You are not making it up. You are surviving something most people could not survive for even a day.
This is what severe MECFS is to me and many others.
Written by Raquel E. Parackal. ME since 2020, Severe ME since 2024.