My Very Own Disease


  • Life

    Poem Commentary

    I have been diagnosed with a somewhat rare disorder called Ehlers Danlos Syndrome. I went through hundreds of doctors, several surgeries, and years of being called a 'hypochondriac' before I was properly diagnosed. This writing was just a release for me, to get all the thoughts out of my head and onto paper. I wasn't originally going to post it, but I figured there may be someone else out there who reads it and decides maybe they don't have it so bad after all. So if this speaks to you, and gives you strength, then it was worth unveiling my fears.

    My Very Own Disease

    My body is having a civil war

    Fighting itself viciously.

    How many years left

    Before I’m wheelchair bound?

    My joints are deteriorating rapidly

    Each hyperextended to the nth degree.

    What does this mean?

    My body bends in unnatural ways.

    There are frequent dislocations. 


    I can choose to cry

    Or choose to laugh.


    So my friends call me Rice Krispy

    Because every time I move

    My joints snap, crackle, pop.


    The tease that my Native American

    Name should be

    Walks on Bended Knee.


    I am broken.

    I understand that.

    And I can joke about it comfortably

    Because it’s not like I can change it.

    If I don’t like my hair, I dye it.

    If I don’t want blue eyes,

    I will get green contact lenses.


    I have tried to imagine my life

    Without the pain as a constant companion

    And can not even begin to fathom

    Just how different my life could be.


    If there were a cure

    Would I take it?

    I like to think so.

    But I couldn’t say for sure.

    My disease is so much a part

    Of who I am now.

    Who would I be without my pain

    To hinder me

    Every shuffled step of the way?


    I am terrified to think what this means

    If my disease, or syndrome, or disorder,

    Is already this bad at the ripe old age of 29,

    What will happen in five more years?


    I doubt that my body can survive much more of this.


    The pain steals my breath,

    So sudden and unexpected and intense,

    It flares up in different places every few minutes.

    I never know where I will be attacked next.


    For the most part,

    I try to hide the amount of pain from

    Those surrounding me.

    No good will come of their pity,

    And I am confounded when they

    Openly imply that I am blowing it out of proportion.

    It’s amazing how much pain

    The human body can tolerate.

    More amazing is the meditation techniques

    You must resort to

    For sanity’s sake.

    I simply try to go to the place in my mind
    Where the pain doesn't live

    And stay there for a while.

    When I think of the progression

    Of my very own disease

    I am startled to realize

    How much it has advanced

    In the last five years,

    Ten years,

    Fifteen years.


    And yet I am one

    Of the “lucky” ones.

    My case is considered mild,

    Since I am not yet on a permanent

    Morphine drip.

    I am not yet in a motorized chair.

    Those things may come with time,

    But not today.


    I am a senior citizen at 29.

    And I can accept that.

    I have accepted it on almost every level.

    But how do I explain this genetic disease

    To my unsuspecting daughter?

    Poem Comments


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    Charlie23 commented on My Very Own Disease


    When I said I didn't know anything about it, I meant to say I found it interesting and looked for more info on it...



    Thank you for taking the time not only to read my work but to look into the condition. I was very touched by that. It's fairly rare so most people haven't heard of it, either. But you were right, that was exactly why I posted this- I was hoping to offer hope to anyone who has been through something similar. Thank you again so much for taking the time to read and comment!

    Charlie23 commented on My Very Own Disease


    I can only imagine, some people blow my mind with what they can accomplish in states that are not considered mobile. I don't know anything about Ehlers-Danlos syndrom, and found it interesting how the symptoms very so much between individuals, that rarely do any have symptoms in all catigories leading it to misdiagnosed - - wow, to have that and be called a hypochondriac... that would be enough to piss anyone off. I admire you writing about your disorder. I hope someone who is afflicted by it reads your words, and can learn more about it... especially if there is someone who has been through what you went through in being mis-diagnosed. Thank you for sharing your poetry!

    stellar commented on My Very Own Disease


    This is so touching and makes me emotionally intense poem....

    HarverTomsson commented on My Very Own Disease


    Your quiet dignity and poise bring tears to my eyes. Tell your daughter, a story of your life, and leave it with a happy ending.

    bloomingsun commented on My Very Own Disease


    your courage at posting this, let alone living bravely in the face of pain is so inspiring. God bless you and your daughter. Ultimately, she will remember how much she is loved and not your disabilities... She is blessed to have such courage as an example to follow in life!

    Poetry is not an expression of the party line. It's that time of night, lying in bed, thinking what you really think, making the private world public, that's what the poet does.

    Allen Ginsberg (1926-1997) U.S. poet.

    simoneaugustus’s Poems (69)

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    Marvelous Sensations 2
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