My EDS Challenge Day 12- Doctors/Nurses in Life with Ehlers Danlos

  • May 12, 2021, 12:32 p.m.
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  • Public

I am taking part in #MyEDSChallenge and #MyHSDChallenge with the Ehlers Danlos Society. Since May is EDS awareness month, every day I will be sharing something about myself and my EDS journey to drive further awareness and community.

Day 12 of the challenge: Doctors/Nurses

The most prestegous doctor I met was Dr. Michael Hibner. He is one of the best in the world for pudendal nerve entrapment. I first went to see him by myself in Nov 2019 to have a consult for my pudendal decompression surgery. This was way before I knew what ehlers danlos was. I thought this would be the end of my journey and I was on my way back to having a life. But this was only the beginning.

Many people with EDS go through at least double digits of drs and nurses before they even know what the three letters EDS stand for. I used to joke that more professionals have looked at my pelvis than intimate partners. Many people speak about being medically gaslit. This disease forces you to learn how to communicate to drs in nurses in different ways than the general public needs to. Its sad, but its a skill you need to have. I’ve met some brilliant and intelligent drs. They know their shit but its usually in a narrow scope of a box. If you do not fit in or present in a way that fits a narrative they have been taught, they can only work with a certain set of tools. Some of my drs appreciate that I come in with research and knowledge, and they really want to help you investigate. Other drs feel threatened and become arrogant and dismissive as a result. Nurses are sometimes curious about your story but don’t understand all that you have been through. But they tend to be very compassionate. Living near a bigger city, I at least have met professionals who know what EDS is but we still get treated like any other patient. I have faith in my lifetime this will change.

music & dogs & wine May 12, 2021

A letter is on the way to Austin. If you don't get this one, i'm over it!!!

AnOrangeZebra music & dogs & wine ⋅ May 13, 2021

Aww thank you hun. That means a lot. Yeah the USPS can kiss my ass.

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