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Survivors' Poetry blog - disability arts online
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Dave Russell introduces an eloquent poem by Wilma Robertson on the prejudices faced by people with ME / 30 July 2013

drawing of a bald head with lots of rooms pictured inside the skull

Knitting Time illustration © Colin Hambrook [www.knitting-time.com]

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This is is the fullest expression of the problems of ME I have encountered in poetic form. Though it is a widespread phenomenon, it is played down by the medical profession. It is often dismissed by the general public as hypochondria, as an excuse to avoid activity and responsibility. In the poem, Wilma emphasises the point that many people with ME are dedicated, hard-working souls who shirk nothing. 'Thoughts' gives articulation to the marginalised and silenced

Thoughts
Sometimes we feel uncertain and unsure of everything,
Afraid to make decisions – dreading what the day will bring,
We keep wishing it were possible to dispel all fear and doubt,
And to understand more readily what life is all about
 
We feel so lost and lonely, so tired out and confused,
It’s not just a state of mind though, our bodies feel bashed and bruised,
They say, “Be strong for your family!” or “Remember how lucky you are!”
Oh please don’t make us feel more guilty; for we’ve pain enough by far.
 
Broken legs are more visible; the discomfort’s there to see,
But if it’s not obviously physical – such as depression or M.E.
The person may look healthy with no outward sign of pain,
But inside they are aching with fatigue, guilt and shame.
 
The people with these illnesses are the ones who won’t say “NO”,
Who go to the aid of others – active, always on the go.
But one thing about these folk – they’re seldom heard complaining,
Because the nature of their ills might be considered feigning.
 
So please don’t jump to judge us and say rather martyrly,
“Oh I just have to struggle on; bed is not the place for me”,
“We all get tired sometimes, can’t lie down at every whim”,
Implying we are weak willed and enjoying being grim.
 
They think we are looking for sympathy and say, “It’s all in the mind”,
“You need something else to think about; new interests you must find”,
“Keep going and you won’t feel tired”, Oh give us all some credit,
This type of attitude upsets me so that this bit, “*********” I had to edit.
 
They don’t see the struggle we face to overcome,
Everyday simple chores which seem so easy to some,
But there are days when even lifting the kettle or walking from room to room
Takes such physical effort – honestly, there’s more life in an old broom.
 
To know how active we once were seems so long now in the past,
Just a few will know the problems of everyday routine tasks.
These people suffer in Silence saying little of their plight.
Few will ever know, as I do, fatigue felt not just at night.
 
A fatigue which sleep does not allay;
You wake shattered every day.
This is a real illness of chemistry
Not just some mood swing from which one can snap free,
Feeling sorry for ourselves is not par for the course,
Though others just might think so – their opinion of course.
 
Someone is always caring although at times that’s hard to do!
It’s the quietness or their sharing that will mean so much to you,
True friends in times of trouble are the ones, who are sincere,
Who don t mind the tears and self-doubt, because they understand your fear.
 
Your energy will at last return, your thoughts once more be clear.
Don't give up just yet; you’ll lose that awful fear.
We gain one thing from experience
Of an illness, which has shattered,
Our ‘good days’ are used to their fullest, and not carelessly scattered,
 
You will emerge from this much stronger and more understanding too,
Of others who in times of trouble may need you – YES YOU!!!
When you see somebody quiver, PLEASE curb the urge to say,
“Come on pull yourself together”, because this could be YOU someday                               
©  1988 Wilma RobertsonSometimes we feel uncertain and unsure of everything,
Afraid to make decisions – dreading what the day will bring,
We keep wishing it were possible to dispel all fear and doubt,
And to understand more readily what life is all about
 
We feel so lost and lonely, so tired out and confused,
It’s not just a state of mind though, our bodies feel bashed and bruised,
They say, “Be strong for your family!” or “Remember how lucky you are!”
Oh please don’t make us feel more guilty; for we’ve pain enough by far.
 
Broken legs are more visible; the discomfort’s there to see,
But if it’s not obviously physical – such as depression or M.E.
The person may look healthy with no outward sign of pain,
But inside they are aching with fatigue, guilt and shame.
 
The people with these illnesses are the ones who won’t say “NO”,
Who go to the aid of others – active, always on the go.
But one thing about these folk – they’re seldom heard complaining,
Because the nature of their ills might be considered feigning.
 
So please don’t jump to judge us and say rather martyrly,
“Oh I just have to struggle on; bed is not the place for me”,
“We all get tired sometimes, can’t lie down at every whim”,
Implying we are weak willed and enjoying being grim.
 
They think we are looking for sympathy and say, “It’s all in the mind”,
“You need something else to think about; new interests you must find”,
“Keep going and you won’t feel tired”, Oh give us all some credit,
This type of attitude upsets me so that this bit, “*********” I had to edit.
 
They don’t see the struggle we face to overcome,
Everyday simple chores which seem so easy to some,
But there are days when even lifting the kettle or walking from room to room
Takes such physical effort – honestly, there’s more life in an old broom.
 
To know how active we once were seems so long now in the past,
Just a few will know the problems of everyday routine tasks.
These people suffer in Silence saying little of their plight.
Few will ever know, as I do, fatigue felt not just at night.
 
A fatigue which sleep does not allay;
You wake shattered every day.
This is a real illness of chemistry
Not just some mood swing from which one can snap free,
Feeling sorry for ourselves is not par for the course,
Though others just might think so – their opinion of course.
 
Someone is always caring although at times that’s hard to do!
It’s the quietness or their sharing that will mean so much to you,
True friends in times of trouble are the ones, who are sincere,
Who don t mind the tears and self-doubt, because they understand your fear.
 
Your energy will at last return, your thoughts once more be clear.
Don't give up just yet; you’ll lose that awful fear.
We gain one thing from experience
Of an illness, which has shattered,
Our ‘good days’ are used to their fullest, and not carelessly scattered,
 
You will emerge from this much stronger and more understanding too,
Of others who in times of trouble may need you – YES YOU!!!
When you see somebody quiver, PLEASE curb the urge to say,
“Come on pull yourself together”, because this could be YOU someday                               
©  1988 Wilma Robertson