It's that moment

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When you realize that the small little move you made, one normal everyday people make all the time, has completely undone your day. You wince and quickly follow it up with a smile so that your loved ones will not give you that look of sorrow. Or is it pity. Or anger. Either way, you grin and bear it because you are young, healthy, and by all accounts that small little thing shouldn't send excruciating pain down your spine.

It's in that moment you remember you have Ehlers Danlos Syndrome, or EDS. The S here is important, particularly if you are female because with out the S you have ED...yup, erectile dysfunction. My big brother told his doctor his little sister had ED. Would have loved to see that guys face, but hey it was 2013! 

So for those unfamiliar with Ehlers Danlos Syndrome let me give you the highlights. If you suffer from a heritable or chronic condition, even if it isn't EDS, you will likely feel like you can relate. EDS is a heritable connective tissue disorder, unless you talk to my mom. Then it magically started with me and if only I would take some fish oil I'd be fine. There are several types, I have Hypermobility type, or Type III in some circles [note: the medical community is finally getting hip to this disorder so they are starting to do some really cool research and redefining of the whole family of disorders]. So what all this non sense means is that my tendons & ligaments are made in a faulty way and they get damaged easily and then don't really heal. Then after those good times they are no longer strong enough to hold my joints together so I have start dislocating and subluxing (fancy term for partial dislocation) numerous body parts! There is so much more to EDS the this, but I can't give away all the fun in my first blog. 

So I'm trying this out, putting the fun, hellish, and down right unbelievable (well at least to people who are judgmental and uneducated) down in a blog. I read lots of different blogs and posts in online communities about this and have been left with a deeply unsatisfying sense that people - understandably so - can only focus on the really awful things about having a chronic condition. But I very much believe that even on the bad days I can see the good in the world and in my life. If this helps to keep me from screaming at the top of my lungs, success. If it stops me from smacking said judgmental person, success. If you read this and learn something about EDS, success. 


So stay tuned...
Location: New England, USA

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