I agree, its hard for others to understand this monster and I find it hard to explain. I guess I am scared they either won't believe me or they will think I am a complete gook.
My husband did read the poem by Alison. Don't remember her last name. She is 14.

How can it be that just one day
Could change my life forever
Steadily growing, burning fire
Within me, leaving never

A life so full of friends
A family who'd unite
I hope they'd always be there
To help me win this fight

What started out so positive
Slowly fell apart
School and friends just disappeared
My family broke my heart

My pain is real and constant
Although others aren't so sure
Why should I have to prove to them
This monster has no cure

I sometimes wish I had the power
To let others take my place
To become me for just one day
And see the frustration on their face

Frustration that they cannot share
In normal daily life
Why wind and rain and sunshine
Cut through them like a knife

I wish my life was just like theirs
Without the need for help
Independance regained, my life restored
Without the need for help

Chronic pain is "secret"
A condition hid away
From those who chose not to look
One I choose not to display

My pain is real, forever here
A reminder of the cost
Of fate and events conspiring
Of my independance lost

Just because I don't look ill
Because i've come this far
Remember that it hurts to not
Ask me how things are

A simple word can mean so much
More than you'll ever know
To know you care, you're always there
Though i've still so far to go.