Hell: An M.E Poem

(My aim for this poem was to collect as many voices of patients with the medical condition Myalgic Encephalomyelitis as possible and create something that perfectly encapsulates the experience. I know from my own experience that its severity and impact is hard to describe. So I collected over 200 testimonials of one sentence or one word summaries and using a random number generator I picked out 18 and formed it into a poem. The shape came about quite naturally. I chose the title ‘Hell’ because it was the word that came up the most frequently. Thank you to everyone who helped me make this and I hope it sheds a light on what living with M.E is like)

Misunderstood,
Half my life stolen.
Draining…
Walking through quicksand.
Limiting,
Frustration frustration.

My life ended but I didn’t die,
Wiped out.
A wrecking ball…
Thirties wasted.
Heavy,
What a waste.

Each day is a new battle just to survive,
Wrapped in a led shroud.
Decades of dying alone…
Endless suffering.
Dying,
Buried alive in plain sight.