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The Things I Wish I Could Tell My Doctor About Ehlers-Danlos Syndrome

key information

source: The Mighty

year: 2016

authors: Charlotte Hiller


Over the last few weeks I have come up against the joys of the National Health Service again – the most tricky of these services seeming to be the good old general practitioners. Yes, that’s right, those smiley happy (usually) pointless people that you have to deal with every time your health takes a turn.

In general, I tend to avoid going. Dealing with Ehlers-Danlos syndrome has taught me a lot – how to grin and bear it, how to put on a smile, and most importantly how to ignore the pain in order to find some way to get on with the life you should be having. Unfortunately, the biggest lesson I have learned along the way is that seeking medical attention is more likely to leave you labeled with unsavory terminology rather then give you any help in dealing with the symptoms that EDS creates. If I could openly talk to a GP who I knew would actually absorb the information, there are a few things I would like to point out to them, and today these have been brought into the forefront of my mind after yet another frustrating appointment.

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