Ancient Silence

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A poem I wrote in 2014 asked to live with this Dryad





Each zebra body is very wonky, I feel like a knackered donkey
Damn joints go out more than me, but you can never truly see
Such daily battle through the pain, living with genetic chains.

I have Ehlers-Danlos Syndrome (EDS) Hypermobility Type III
and wrote this little poem for EDS awareness month in May.

Why the zebra? Trainee doctors are told ~ when you hear hooves think horses not zebras.

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EDS Awareness Month allows us to highlight that it is imperative that accurate knowledge of the Ehlers-Danlos syndromes and hypermobility spectrum disorders is increased within the medical community.

We are fighting to ensure our conditions are recognised and that, with the new criteria, patients are more likely to receive an early diagnosis and consistent care and management plans.

May Awareness Month is a time for coming together as a community and fighting for change. This is an opportunity to get involved with your charity, help raise awareness and educate others about the Ehlers-Danlos syndromes and hypermobility spectrum disorders and the issues faced by patients due to misdiagnosis and lack of knowledge about the conditions.

It is a time to work together for change and we need everyone to get involved; we all have a part to play. Distributing leaflets to your local GP surgery, telling 10 people about EDS, fundraising and sharing on social media – there is a way for us all to help. Find out more about your local support group and join together with us via social media – let’s amplify the message and make our invisible VISIBLE!

Living the Lie

For the first time in our separated lives
I learned about you and me only last week
Realisation of a whole life misunderstood
Two worlds wired in complete difference
How could we ever communicate
Our language of disparate tongues
Both locked in this same world
By our shared gene pool of perception
Yet poles apart divided connection
Talking, not talking
Craving, avoiding
Extrovert, introvert
Opposite sides of the spinning compass
North and south, east and west
Learning by dysfunctional example
Masking any authentic truth
Exhausted from repeated pretence
Unaware that our heart caused offence
Natural honesty lay just inside
Whilst acting out a living lie