A poem about living with CFS by Nicole
You look at me now and you may see a grin
But I'm a person who can't enjoy many things.
I suffer from that thing called Chronic Fatigue Syndrome
So most of my days are spent alone at home.
I can't go out like you do and have some fun
That's because I'm twice as tired when I'm done.
I don't recover like you do with one night's sleep
Sometimes it's like I haven't had even a peep.
But you don't understand and you never will
Unless you've had this and gone down that hill.
You go down so fast and don't know what's wrong
But the willpower inside tells you to hang on.
You suddenly realise your life has dropped
While people around you continue with theirs and never seem to stop.
They look at you and encourage you along
Because they don't see what's truly wrong.
It's a debilitating illness which is so hard to fight
There's no one way to get it, nor one way to make it right.
We suffer for ages trying all different things
When all the time, our life's hanging by strings.
Depression sets in and sets up home in your mind
It's the courage inside that one must now find.
So many times you feel like giving up
Running away from it in the hope it will stop.
But you can't leave now cause you're not well enough
Fighting this thing seems to be getting more tough.
One day you feel good and want to do so many things
But the more you do, the more suffering later it brings.
It's like a rollercoaster ride going up and down
One days it's all smiles, the next week all frowns.
We try to stay positive with all our might
But after such a long time, you feel like you're losing the fight.
No doctor can give a perfect remedy, nor specialists the elusive cure
So we live in hope and wonder how much more we must endure.
We see people with colds and flus complain
But a week down the track, they're all better again.
They don't understand how an illness can last so long
And judge the stability of our minds as being the part that's wrong.
Our friends who always happened to be there
All of a sudden have disappeared.
We can't go to parties or get together like before
So now they see us as unsociable and ask no more.
The invitations stop coming and the phonecalls are less
It's now you find out who your true friends are I guess.
Even when we have a good day
Our friends and partner have gone away.
Our world is one of loss and fear
While trying to stay strong and head clear.
We don't chose to live our days like this
Who would want to jeopardize career, friends and bliss.
So don't judge us by your first perception
Unless you know all about, or have suffered from this condition.
What helps us along is your compassion and understanding
A shoulder to lean on and sometimes a tissue to cry in.
So treat us normal, the only difference is our limitations
We're still the same people, with just a few complications.
I'll continue to fight and try my best
Then one day I'll be back to normal like you and the rest.
This is to help you understand how having this illness feels
And how your understanding can help me heal.
© May 1998 Nicole Chan