Knowing is everything

Posted December 26, 2018

by Elaina B.

“Hi, I’m Elaina, it’s nice to meet you”

For 20 years, I have sat across from medical professionals and have given the same greeting, countless times. I take a deep breath and gather all the strength I have to explain my reason for being there today. This is because, for over 20 years, my long list of health problems and chronic pain have been ignored, dismissed, and belittled. Not this day; this is the day one woman changed my life.

I was at physical therapy for an evaluation to treat neck and shoulder pain with craniosacral therapy. As fate would have it, only one PT in my area is certified in this particular therapy. As I begin to explain my acute reasons for seeking therapy, I notice something different: empathy. She looks up when I’m finished and tells me that she understands, that she’s a pain patient too.

I continued to see her twice a week and over the next few weeks, we chatted about everything, which led to my health issues being discussed. She started asking me questions, and then more questions.

Do you have joint pain? Are you hypermobile? Do your joints pop often or dislocate? Do you have GI issues? How does your body heal? Do you ever have shortness of breath, light-headedness, or syncope? Migraines? Eye issues? Gynecology issues? So many questions and they were all a yes. I didn’t know where this was going until she opened up one day.

“You know, I have a connective tissue condition, called Ehlers Danlos syndrome,” she said. “My daughter has a condition called dysautonomia. You have almost all of the symptoms of both.”

What? I’d never heard of these, and besides, I’d been tested and scanned for everything. I went home and I researched.

Floods of information came pouring into me, and it was if I was reading my story. MY story, the one I thought only I had. The unexplained pain and symptoms I thought I lived alone, all in my head. It was there, it was real.

I saw her again a few days later and I knew, and she knew, and we just sat there and cried. I cried in relief and she cried in remembrance because I was her once.

Shortly after, I was indeed diagnosed with both hypermobile Ehlers Danlos syndrome and dysautonomia, along with mast cell disease, and other comorbidities of EDS.

When you’re sick, you hope for something that is fixable, curable. You yearn more, however, for something. You yearn for anything, for a name of the monster that is trying to steal your life. That’s why learning that I have a rare, incurable genetic condition with few treatment options made me cry tears of happiness.

The next emotion? Anger. Why did it take me this long to be diagnosed? Why had I never heard of a condition this debilitating? Why have all of the doctors I entrusted my care never heard of this? Why, as a child and as a woman, was I brushed off, downplayed, turned away and laughed at?

Advocacy is important because knowing? Knowing is everything. Knowing is research funding. Knowing is changing the way the world sees disability. Knowing is support. Knowing is community resources and assistance. Knowing is confidence. Knowing is peace.

Even after my diagnosis, I am still fighting to be heard in my medical care. I am still fighting for EDS to be heard in the world, and I’ll never stop.

“You’re just drawing attention to yourself when you post about EDS, talk about EDS, etc.”

Am I? Good. If I can be the person that changes everything for someone else, I’ll talk and I’ll post, and I’ll wear zebra stripes every day.

 

Disclaimer: Each story submitted to The Ehlers-Danlos Society for this #myEDS/#myHSD anthology is published "as-is," with only minimal edits for spelling, grammar, and typographical mistakes. Each profile reflects the personal views, experiences and opinions of the individual authors-and, thus does not necessarily represent the views and/or endorsements, individually or collectively, of The Ehlers-Danlos Society, its leadership, staff, boards, or communities. We can also not confirm any medical claims or comments in the story.

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