I’ve found myself saying this phrase a lot throughout my life. I first learned it in recovery circles – Adult Children of Alcoholics as a teenager, initially. Followed by Codependents Anonymous later. And more recently I’ve been saying it in regard to the medical world’s inability to see and diagnose a form of Ehlers-Danlos Syndrome when
I’m cooking up lots of helpful solutions for all of us afflicted souls, literally as I type this. Meanwhile this is a quick house-keeping (place-holding) post to let my slowly growing reader base know that I’m working hard on sharing the “What to do about it” aspect as soon as I can. The trick is, I’m trying to decide which
Appearances are deceiving. Everyone has undoubtedly experienced some form of misunderstading, bias or disrespect from some form of misjudgement based on our appearance, sick or not. (Racism, sexism, agism). But the appearances of those with any form of Ehlers-Danlos Syndrome are especially deceiving, as the majority with it show no visible outward signs of illness at all. Every EDSer (aka “zebra”
Update May 1, 2017: This post was originally written in 2014, before the brand new category of Hypermobility Spectrum Disorders was introduced by The Ehlers-Danlos Society in March 2017 for those who are “less bendy” or symptomatic per the new EDS criteria. Thus, I will be re-writing this entire post to reflect this fact and
Every chronic illness and issue has an awareness month, and May happens to be the month for Ehlers-Danlos Syndromes Awareness. So prepare to be beat about the ears and eyes with lots of awareness tweets, pins and Facebook posts by your afflicted friends or family. However, THIS year (I’m updating this in April 2017 after
Originally written and posted in 2014, updated in November 2024: Official FDA Black box warning against using Cipro with EDS patients from 2018 <—-link Original post with updates: Okay, at the risk of sounding like a simple ranter, I’m dropping in a quick cautionary post to urge ALL who are hypermobile (whether you have a
Boy is this a hot topic! Naturally, since it’s so hard to even get a doctor or doctors to listen to us and recognize our vast collections of symptoms (see last) as a possible systemic condition, we naturally want an easy test to take and be done with this painful journey and have an answer. (Our
Alice in Wonderland doesn’t hold a candle to me – or anyone else with Ehlers-Danlos Syndome of any kind, I’d say. As long, winding and mind-bending as her journey down her rabbit-hole seemed, the journey of an EDS patient has an unending supply of twists and turns that would make even the Cheshire Cat blush.
