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Hello May, hello one year diagnoses, hello pieces of the puzzle I knew existed.
In short this is my story and contribution to Ehlers Danlos awareness month for 2017. For now, until the genotyping has been completed, and the source of our major malfunction has been revealed, awareness is the voice we have to lend hope to our struggle.
I suppose these are my annotated frustrations from this afternoon's interaction with a physician. I will not divulge their name, specialty, or any information that can be misconstrued as defamation, for that is not my intention. Just my accounts of an interaction that was not necessarily medically accurate. I will also refer to this person as, "the other party" or TOP throughout in an effort to remove myself from any unnecessary negative associations, because that's just not necessary.
Inaccuracy #1 - I was not asked what my symptoms were when TOP walked in the door. I got the perfunctory hand shake/"nice to meet you" and bam "your MRI is absolutely normal." (First of all why start with that, and so emphatically using large hand gestures) "Okay , but the pain in my neck? It's causing strain and headaches." To which the other party responded "Ehlers-Danlos is not know to have chronic pain." To which I of course responded "of course it is." I felt myself getting very angry, and I grabbed the paper I had brought to help mediate our interaction, to try and be as productive as possible, entitled "Neurological and spinal manifestations of the Ehlers-Danlos Syndromes" and began to express my concern for a condition which was explained in the article, and fit the bill for what I was experiencing, as I handed the paper over. TOP took it from my hand and placed it immediately back on the chair next to my purse and said "Ehlers-Danlos does not present with [these] symptoms." I responded "If it does not present itself with [these]symptoms then why is there a paper on it?" TOP mumbled "American Journal of Medical Genetics, no," as they laid the article down.
Inaccuracy #2 - TOP also kept referring to a college friend who had Ehlers-Danlos throughout our interaction, and that he passed young from a vascular issue in his brain. Towards the end of our interaction TOP again referred to this friend, and said "but they have the genes figured out for all of the different types now." I responded "no they do not. They have not found the responsible gene for the hypermobile type." TOP responded "well my friend had type four." I said " they don't use that terminology anymore, there was a new international classification released on the 15th," then mumbled something I had a hard time deciphering.
Let's be honest, sometimes talking to a Dr. is like trying to hit a rubber wall with a with a piece of fly paper. You'll never get your point across, or anywhere for that matter because the other person in the room is not willing to listen. While this most definitely can, and DOES, happen with any random person you encounter, it definitely put me off for a moment. I have had a few great encounters with physicians. To be honest I know there are amazing doctors out there, I just haven't been physically in the presence of any who are interested in the pain, or the symptoms that I am experiencing. I can name people, but that would not take into account the dynamics influencing the other party. I understand the physician walking in the door who has never seen you may or may not have a million things running through their heads that day too. I also never wish to turn any personal documentation, post, opinion into a doctor bashing session. That just is not productive, and who has time to let situations that never gave you a road to journey down in the first place, your precious time or theirs?
I also wish to clarify that I am grateful for every single person/physician who devotes their life's energy to science, medicine, and being proficient in the art of human connection, and healing. I know there are enough caring physicians out there, that I WILL interact with one, or many of them. Physicians are people, sometimes it doesn't work out and that's always okay. I just realized that I am thirty-four and I can count the good experiences on one hand. The thought of hope that one of those encounters is in my future is reassuring. It was just hard for me to hit such a huge psychological wall only eight days after so much amazing and pertinent information has been released, referring to the 2017 International Classification of the Ehlers-Danlos Syndromes. Then my first appointment to be with someone so clearly not up to date on current information regarding Ehlers-Danlos or how it effects the body. There were many other glaring inconsistencies, and I literally almost walked out, but thought TOP deserved my full attention, as I wanted to have theirs.
While I realize the majority of this article is negative. So negative right. It's just an experience, a lesson. So many bad experiences. What key intent am I lacking, am I missing? I feel like I've been working so hard to be aware of my emotional responses and how they effect and aggravate an interaction. I almost feel like I should record my interactions to learn. What do you do in these situations?
Logic - Brush it off, focus on the positive experiences. Go plant sniffing in the garden (serious though).
Brain - &#^@)$(@^$)!_!^$*(#)+#@*@) <---- do you see the accidental bunny?
See there's a silver lining in everything. Don't let poopy situations get you down. Maybe I'm just not good at self-advocating. I know I shut down easily once a conversation starts to go south. My point is your general "don't let one bad apple" bit, there are more apples...you get it right? While you also have to not be the bad apple yourself, sometimes relations won't work out in the first place, and that may lead you down the road you need to be on. Keep looking for those things that nourish your soul. Hitting a wall doesn't mean it's the end by any means. Chronic pain, depression, and multi-systemic disorders are a labyrinth. Hitting one wall means you need to go in another direction to get through.