 My crazy journey with the genetic condition known as Ehlers-Danlos syndrome has been a common one, I'm finding out. As so many of us are just now grasping our diagnosis - a diagnosis that has been unknown to us for most of our lives. I can't count how many times I've been seen by doctors for classic EDS symptoms and was misdiagnosed and mistreated instead. Every single time, as it so happens. As it is with most of us with EDS. Most of us have had to self-diagnosed with the help of today's medical community - and its flight away from traditional practice - towards being social media influencers. The exodus of doctors might have left a GIANT HOLE in actual physical care, but at the same time it has spread a lot of much needed (MUCH HOARDED) information out into the population at large. Even to the poor folks, like me. Sadly, one person's loss is another person's ability to diagnose a condition that has been mistreated and overlooked our entire lives. Of course, it might help if they actually did medical research on women because it's women like me who predominantly suffer from this genetic condition. Then again, if they actually treated us for our incurable genetic condition they wouldn't be able to profit from all of the 'chemical fixes' they sling at us - in the name of today's fad X condition. I wonder how much money us women have paid over the decades to be lied to and treated like rats in a cage. I wonder how many yachts our collective suffering has paid for. It's truly amazing how much the medical community has profited from the misdiagnosis of EDS. And even more amazing is that it has somehow convinced most of us that our symptoms are our own fault. The truth is, the medical community simply doesn't care enough to know much of anything about a genetic condition that affects more than 2% of the population. And so... we've suffered, many in silence and shame. For me, just like with so many who suffer with the hyper-mobility and dislocation type, it has been non-stop-war, literal war, with my body as the battleground. And like so many others suffering right now from EDS - I am exhausted. Literally exhausted. Sigh. Damn dog eat dog world, and all its winners. Since as far back as I can recall my body has been invaded - quite regularly - by inquisitive doctors grasping at straws. My body... my dislocating body... constantly fighting back against the entire world - takes up way too much of what I can remember. That, and everyone treating me like I was crazy... like it was all in my mind. Sadly, that's pretty common too, as most folks with EDS my age and older seem to be saying the same exact thing. Laughed at, mocked, treated as though I was nuts - given a million invasive and expensive tests, and cures that never offered any real solutions... I was the guinea pig for way too many barbaric doctors and surgeons, and all because they felt entitled to ignore their oaths to 'first do no harm'. I'm tired. So tired. This battle has really taken it out on me, and this too seems like the commonest trend in the EDS community. After a dozen surgeries and way too many injuries to count, I'm left with very complex medical PTSD. I'm left not only shell-shocked but physically tortured by their aftermath. It's a journey, I remind myself. A journey meant to bring me wisdom and better understanding. I take a deep breath and I recall... Sisyphus Exe 06/02/2024 “I leave Sisyphus at the foot of the mountain. One always finds one's burden again. But Sisyphus teaches the higher fidelity that negates the gods and raises rocks. He too concludes that all is well. This universe henceforth without a master seems to him neither sterile nor futile. Each atom of that stone, each mineral flake of that night-filled mountain, in itself, forms a world. The struggle itself toward the heights is enough to fill a man's heart. One must imagine Sisyphus happy.”
0 Comments
Leave a Reply. |
Archives
December 2024
Categories |
RSS Feed