Ehlers Danlos Syndrome

Misfortunate: A Poem about Ehlers Danlos Syndrome

Hello Everyone,

I thought I would have a go at poetry to express my thoughts.  I suffer with Dyslexia so it may be rubbish but I wanted to share with you what I came up with.

Lots of Love,

my name


Misfortunate

As I waddle like a penguin, my defected collagen impersonates a gremlin.

Cracks, in and out my joints loudly scream,

Without caution, my body bends and breaks again.

Left, right, up and down circular motions,

Whether I stand or lay, my fragile skin remains broken.

Black, blue, green and purple, all beautiful shades in a rainbow,

All out on show for the world to see that my body has taken another blow.


As the Earth orbits around the globe,

I travel around many different places,

Not visiting fun landmarks but wasting hours staring at hospital walls.

Listening to others search for a cure, with saddened faces.

Doctors orders, another day of rest is required.

I am summoneded to debt or to battle on with tolerance.

Anxiety grows inside of me poisioning my veins

                                                    Why I am so differently wired?


Infection after infection, chronic illness is a true test of resilience.

Who will remain your friend and who will abandon you.

 No choice but to adapt to my surroundings and welcome transilience.

Deep  breathes in and exhales out,  I must not snap and break as easily as bamboo.


Everyday I pop pills like smarties to conquer on,

Thinking about the future and what is to come.

An overactive mind, questioning is it fair to pass EDS on to a daughter or a son.

One second , I feel everything and the next I am benumbed.


Ehlers Danlos Syndrome you have taken part of my mind, part of my soul.

Yet, now I accept you, you will always be there.

You have had the power, all the control.

Now I am going to fight you to live, not just exist

Even in those hard times of sorrow and despair.


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38 thoughts on “Misfortunate: A Poem about Ehlers Danlos Syndrome

  1. Living with a chronic condition can be debilitating and affect every part of one’s life. I am grateful to read your touching poem which is the best way for you to express your feelings.

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  2. i never heard of Ehlers Danlos and looked it up. I think journaling and writing poetry is a good way to express oneself and let go of many thoughts. all the best 😀

    xx
    maliblue

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  3. This is so a wonderful poem. And so beautifully written. If I didn’t know about your condition I would never thought that you have any syndrome or dyslexia.

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  4. I’m so sorry for all you have been through. I guess you have the answers of a diagnosis, but (by the sounds) not much you can do about it beyond that? I spent 2/3 of my life trying to figure out why my body didn’t work like it was “supposed” to, and only a few months ago FINALLY got the diagnosis I’d been waiting for, to explain all the broken bones and joints-falling-apart and surgeries over the years. There is only one medication to compensate for the deficiency that I now know is caused by a genetic mutation (and that I now know is at the root of all my troubles) – I am now on this medication, and pray that you can similarly find some answers to help you live better soon. It is truly a miracle to have your body NOT betray you all the time, for what feels to me like the first time in my adult life!

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    1. Hi Flossie , I don’t have all the answers yet unfortunately ! I do in terms of managing my EDS but not my BPD although that is curable but the main problems are with mast cell activation disorder , IBS and my chronic bladder syndrome . Although doctors are working hard for me this year . I glad you finally got your answer but it is horrible it took you a long time to find out what was wrong too. I am on the most complex diet and wish an elimination and low histamine / librant diet would work with blockers and stabilisers but my body is suspected to be fighting a infection in my gut. What medication are you on ? Xx

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  5. I was misdiagnosed with endometriosis a few years back. They dont know what eas causing my chronic pain but it mysteriously disappeared after about 2 years. Its hard dealing with an ongoing issue but I commend you openess about your feelings. Your poem was fantastic.

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      1. Donna Hudson I only recently just got into poetry so thank you ! I am releasing one every month about mental health in November and more about other illnesses I have in December xxx

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