Life With EDS

This poem expresses so well the answer to the question I try to answer all the time when I can't keep up with people who don't know me very well. I suffer from "a rheumatic mixed connective tissue disorder" very similar to Ehlers Danlose symdrome, a genetic condition wherein nothing shows, so you don't "look sick" and therefore, many people do not believe that there's anything wrong, I'm "just lazy" or a "hypochondriac". I assure you, it's only TOO real.




From the day I was born
I've been falling apart
from my head to my toes,
from my joints to my heart.
For fifty-three years
all the Doctor's have said
that nothing was wrong,
it was all in my head.
"She" called me a "klutz",
"He" said I was "slow".
"Were you ever abused?"
"They" wanted to know.
I finally KNOW why
I get hurt so much,
I finally can deal with
dislocations and such.




They say there's no cure
for people like me,
we'll keep getting worse,
from what I can see
though, I will not die.
Like people with AIDS,
sometimes I just hide
and close all the shades.
EDS makes me angry
when I hurt all the time
and so I sit down
and put words into rhyme.
But I'll never quit hoping
and neither should you
'cause one day there might
be a cure for us, too.



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