I think sharing our stories are so important and I know that reading them helps so many of us not feel so alone. We also learn more information, gain deeper understanding and feel as though there IS someone who understands. The story below is a great example of what those with EDS face, both from the aspect of daily struggles when “you look fine,” to challenges faced in the healthcare community when trying to find an adequate diagnosis and/or anyone who understands that GI issues ARE related to the hives you get when you are cold (or from being nervous or from the sun), as well as to migraine headaches, horrendous growing pains, chronic fatigue, circulation issues, easily bruising, etc., etc. The list could go on, but I think the point is made loud and clear. However, 2 things that resonated with me through this story (other than Amy is blonde and blue-eyed) is that I also feel as though not receiving a diagnosis until age 26 was a very good thing and I can fully understand the working hard as a coping mechanism. Again..not such a bad thing either, other than I’ve had to learn to really pace myself and my OCD has had a few good kicks in the ass, but otherwise … what else am I going to do? Just lay in bed?? Hell no, not me and not Amy either.
Sharing from Ehlers-Danlos Support UK Facebook Page:
‘Not so unlucky’ ~ Amy
“I was diagnosed with EDS last year, not long after I turned 28. By the time I’d been through 10 medical specialties, I put my increasing list of ailments down to bad luck. I mean, why would a problem with my foot (the orthopaedic doctor wanted to operate on) be related to the issues gastroenterology? Precisely. The level of discomfort I experienced throughout childhood, my teens and early adulthood, will forever be a part of my memories. Despite this, I went on to University, convincing myself that if my pals were suffering the same, they must be really good at hiding it.
My most recent return to University was sadly short lived. Old problems resurfacing and new ones appearing, a pile of pills and more medical appointments than I care to remember, turned my world upside down. Over the following months, I became fed up with
thinking my problems were purely bad luck. The possibility of a connection had crossed my mind in the past and after a physiotherapy assessment where it was concluded, I was “very
flexible”, I decided to run my thoughts passed a doctor, if only just to say them out loud.
A diagnosis from Genetics later confirmed it. In contrast to others, joint problems and pain weren’t major features of my presentation. I’ve also avoided the difficulties; I know others have had in getting a doctor take me seriously. For this reason, a comment made
during my genetics assessment, that “at least people wouldn’t think I was a hypochondriac anymore”, couldn’t have been further off the mark. I’d never come across this, I was an enigma maybe, but hypochondriac? definitely not. Then why was this not figured out a long time ago? Because, I’d been diagnosed with eight different things already.”
To read Amy’s full story, click on link above or go here: https://www.facebook.com/EhlersDanlosUK/photos/a.230651766986895.80779.153693304682742/872030452849020/?type=1&fref=nf&pnref=story
Note: Amy’s story has not been submitted to be included in the EDS Anthology, “Our Stories of Strength – Living with EDS.” Her story was shared with EDS UK and I’m sharing it again. However, I personally feel that it’s a great example of a story of strength, while living with Ehlers-Danlos Syndrome.