“This year is one of the weirdest years of my life yet,”
I said this casually to my hubs while en route to yet another out of town appointment. There are so many these days now I am all diagnosed, official with Ehlers-Danlos Syndrome. I get lost in the fold, but I am grateful to at least have a solid diagnosis to work from.
This week’s excitement included a horribly “painless” procedure, known as hemorrhoid banding.
Yup, I said it. I’m sharing it.
I have hemorrhoids and I’m unashamed!
For the last 20 years, these awful things created nuisance in my life. Popping out at the most inconvenient times. Scaring me half to death, thinking my intestines were bleeding out the first time one burst. Making me resort to special donut cushions and hemorrhoid creams to cut back on the misery! Pregnancy only made them worse. I learned the graceful art of “tucking” them, but anymore there is no relieving the distress.
No matter what remedy I used, they always returned. Rearing their ugly heads and making my life all the more challenging in managing all the malfunctions associated with this debilitating diagnosis. Yet, one piece of the many making up my Medical Zebra case.
Despite the nature of this procedure, I am pretty excited to get relief. It isn’t painless but I lived through the first round. The nurses were very kind, which always makes me happy as a former nurse with old school nursing values. Even though my gastroenterologist said the banding wouldn’t help at all with my chronic constipation battle, I don’t see how it could hurt! Those jerks are getting BIG!
Enough of that, though! This post doesn’t really have anything more to do with hemorrhoids aside from the inspiration of seeing the only original member of my medical team that formed during the beginning of my major declines in 2007, almost 10 years ago as I author this post.
Before the procedure began, he came into to ask me how things were going and to ensure I understood the procedure. I appreciate this doctor doesn’t treat me condescendingly, but I often daydream about asking him why he never investigated an Ehlers-Danlos Syndrome diagnosis over the last 8 years of our patient-specialist relationship when it is so crystal clear EDS was the origin of all those problems so many years ago.
What with all the research available on the IBS, Sphincter of Oddi connection to Ehlers-Danlos Syndrome I find it hard to believe he never once suspected something larger at work, but why would he never suggest further follow ups? Why would he not send a note to my primary saying, “Hey, could you please get her checked for this” if it was out of his jurisdiction?
Still, it took another severe decline for him to mention the possibility of a “more global diagnosis” at work. All the while beforehand, telling me there was nothing to concern myself with as he’d corrected my Sphincter of Oddi problem and no other structural problems were identified on my results. Even so, only after I initiated research did I find the tissue issue connection of EDS and all my gut problems. I still was responsible for leading my primary to the diagnosis and getting to a geneticist for my official zebra club badge.
I daydream a lot about what I am going to say to my doctors. I often write up agendas for my appointments because when it comes time to describe my experience I cannot get my words out fast enough. The words jumble off on trails crossing over one another only to lead back to the original point if I’m lucky to recall what it was!. With my cognitive decline, it gets tougher still. I see the processing on my practitioner’s faces, trying to figure out what exactly is her deal.
Over the years, some thought I was obviously depressed. Others asserted stress. The bad ones insisted it was all in my head. Regardless of their opinions, I was always right. There was something wrong. My pain was and is real. My decline wasn’t a product of depression. I mastered my social ineptness into a personality people generally liked to come out of my social awkwardness. I learned mindfulness and the true meaning of life. For once in all my life all the pieces of the puzzle fit together once my Ehlers-Danlos diagnosis came to light.
Even so, the past experiences associated with invalidation through my local healthcare system along with recurrent invalidation from practitioners uneducated on the latest developments with Ehlers-Danlos serves to make this journey weary at times . In my daydreams, I imagine eloquently describing my self-assessments to my physicians as they gather round enthralled by my knowledge and my case. We work together as a team towards the goal of getting me the best quality of life despite my disabilities. In melodic harmony, my treatment plan comes together right in line with what the Ehlers-Danlos Society recommends.
The reality is most, if not all, of my physicians, are essentially uninterested in my case. Many are even afraid to touch it. As a former practitioner, I can’t fathom why because cases like mine are the thing TV series like “Mystery Diagnosis” are made of! In fact, here is an episode of mystery diagnosis featuring EDS!
In the TV land of healthcare, doctors are always interested in a case like mine, but in reality…
My daydream is a pipe dream, let’s face it.
No practitioner has time to listen to a 35-year-old newly diagnosed EDSer with an underlying neuro divergence yet afforded the definition of a diagnosis and 5,000 medical complaints. Surprising, I know!
If you know of one, please send them my way!
In the meantime, I present this idealization of what I would say to my doctors if I could articulate it beyond my anxiety and complex PTSD reactions brought on with medical dealings. I know I’m not the only one who goes through this and my hope is sharing will help those who need it in whatever way the fate of the universe wills it ❤