Lonely does not really cover the experience.

Having Severe ME must be one of the
loneliest experiences on Earth

You are lonely from the world

Lonely from society

Lonely from friends who you cannot see

Lonely from family who you cannot be with

Lonely from the person in the room with you

because they are still out of reach to you

Lonely from yourself

Your body will not do as it is asked

You cannot find a single thought

You have lost your memory so even the daily events are forgotten

Trapped away

People forget what you were like

Or expect you still to be the same

They cannot begin to imagine your reality

The fine detail is hard to comprehend

Few try

Others utterly fail

Lonely does not really cover the experience.

It is like living on another planet

So far away from normal as you could ever imagine and more

A planet without colour

Without enough air

Without enough water

Without form

Without people

A splendid isolation in an alien environment

Where the rules you learned to live by no longer apply

Where often the opposite of expectation is true

Where what you say is simply ignored or overruled

Where basic equality and respect no longer comply

Where there is no hope

Where there is no ackowledgment

Where there is no support

Where there is no real recognition

Where there is an endless battle to get basic needs met

Where you cease to exist or count as valid

This is your reality from the moment of diagnosis

You are treated as if you have a non disease

You are treated as if there is no actual physical reason for your illness

You are treated as a malingerer, a ne'er do well, a useless burden, lazy and unwilling to change

Covertly if not overtly

You disappear from view

And then you cease to be visible

And then you are a pariah

A nuisance

A stranger

You are crushed by everyone else's lives

You cease to have your own meaning and being

You wait in a tortured limbo land

For a treatment or a cure

For help and confirmation

That never arrives

Whilst everyone else goes about their daily lives

At best paying lip service to your existence

Or simply negating you

Not willing to take account of your anomalies

Too odd, too complex, too inconvenient, too difficult, too strange to encounter and adapt to

And then the separation is final and complete.

Lonely indeed

But so much worse

And so so empty

Gone, let's face it

And never to return

Despite your best hope.


Linda Crowhurst

Popular posts from this blog

A letter to Sir Andrew Dillon , Chief Executive, NICE

Why ME must be removed from the JCPMH Report : Guidance for Commissioners of Services for People with Medically Unexplained Symptoms

A 10 point nursing model of practice for patients with Myalgic Encephalomyelitis (ME)