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Karen Smith is an Australian Lyme Patient. She wrote "Invisible" in an attempt to express some of her thoughts and feelings about living with an Invisible Illness for many years.
Karen is also the founder/author of Lyme Australia Recognition & Awareness, for more about Karen / her journey with chronic illness click here |
Invisible
Invisible really is not all it’s cracked up to be
It is dark and painful, lonely and bleak
It is the realisation that you must constantly fight
If there is any chance to be reunited with the light
Invisible is the desire
To live without pain and to return to a normal life
To be able to work, drive, listen to music or dance
Where the simple act of catching up with friends
doesn’t come with the ‘payback’ of a few days in bed
It is the dreams to participate once again in life, to live to the fullest, not simply exist
Invisible is the longing
For the understanding of family and friends
To know that they truly remember who we were before illness
That they believe we are doing our very best to return to that life
To know that we are still loved and respected for the people we have always been,
and not judged by the illness that has consumed our body
Invisible is the despair
That one day you might not keep finding a reason, or the strength to continue on
It is the midnight tears, and the questioning of ‘who am I” now
It is wondering will this pain ever end, will these voices ever cease,
and will I ever find ‘ME’ again
Invisible is the cloak we wear
The smile on our face, and our light-hearted jokes
Are veils and armour that hide the pain and heartache
Look into our eyes and you will see
Invisible is a place, you don’t ever want to be
Help us bring invisible into the light
So that no others have to suffer and fight
Tell our stories, believe our plight
Stand up with us and say, enough of the suffering - this just isn’t right
It is dark and painful, lonely and bleak
It is the realisation that you must constantly fight
If there is any chance to be reunited with the light
Invisible is the desire
To live without pain and to return to a normal life
To be able to work, drive, listen to music or dance
Where the simple act of catching up with friends
doesn’t come with the ‘payback’ of a few days in bed
It is the dreams to participate once again in life, to live to the fullest, not simply exist
Invisible is the longing
For the understanding of family and friends
To know that they truly remember who we were before illness
That they believe we are doing our very best to return to that life
To know that we are still loved and respected for the people we have always been,
and not judged by the illness that has consumed our body
Invisible is the despair
That one day you might not keep finding a reason, or the strength to continue on
It is the midnight tears, and the questioning of ‘who am I” now
It is wondering will this pain ever end, will these voices ever cease,
and will I ever find ‘ME’ again
Invisible is the cloak we wear
The smile on our face, and our light-hearted jokes
Are veils and armour that hide the pain and heartache
Look into our eyes and you will see
Invisible is a place, you don’t ever want to be
Help us bring invisible into the light
So that no others have to suffer and fight
Tell our stories, believe our plight
Stand up with us and say, enough of the suffering - this just isn’t right
A brief explanation of invisible illness as written up by Karen (for Red Shoe Day: A Day of Remembrance):
In the broad sense of the term, invisible illnesses are those that are generally "invisible", not only from the outward appearance of the person, but also seemingly invisible to appropriate research, treatment and care of the thousands of people that are living with them.... Explanation continued on Red Shoe Day
In the broad sense of the term, invisible illnesses are those that are generally "invisible", not only from the outward appearance of the person, but also seemingly invisible to appropriate research, treatment and care of the thousands of people that are living with them.... Explanation continued on Red Shoe Day
Below is a Link to the poem and comments where it was originally posted on Lyme Australia Recognition & Awareness facebook page.
