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Writer's pictureSuzanne Warren

My Ehlers-Danlos — Sometimes known as Hypermobility syndrome



The things I want others to know


Yes, it’s subluxing and dislocations of joints

Yes, it’s painful

Yes, fatigue is present

Yes, I experience brain fog


But — what you might not expect…


It’s on the inside too — wherever there are muscles

Bladder and heart — a vascular syndrome

Autonomic dysfunction — regulation of temperature — bodily sensations

Add TMJ dysfunction (damaged jaw joints) and that’s the full package


No, it’s not in my head — I am not lazy

No, it’s not easy to manage — mental health is affected

No, I don’t know what each day holds for us

No, I don’t know if I’ll fall and injure myself


That’s the problem with an invisible illness

No one really knows what I manage

Many don’t care or try to comprehend


That’s what I want to change

To challenge people's views — to aid understanding


So - What do I really want from others?


Please think — invisible

Please think — variable

Please think — challenging

Please think — what can I do to make things easier?


I really hope that isn’t too much to ask of you …


For more information on Ehlers-Danlos visit: https://www.ehlers-danlos.org/



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