Not Invisible

Posted August 31, 2018

by Erica O.

When I was younger, I had terrible knee pains. They were considered “growing pains”.

As I got older I started having horrible stomach problems. They were considered “stress-related”

The joint pain and subluxations started, quickly followed by food allergies, swollen hands, unexplainable rashes.

I spent several years shuffling from rheumatologist and GI doctors. An endoscopy showed gastroparesis. The doctor told me this isn’t a problem and there isn’t a treatment.

Rheumatology told me I had lupus, then I didn’t have lupus due to my labs being normal. Then I tested positive for Lyme Disease. Then upon closer inspection, they decided it wasn’t really a positive. A cardiologist diagnosed me with POTS/Dysautonomia, but no education or medication was given to me.

A rheumatologist told me I had hypermobile joints and to read about it while they tested me for lupus, again. While reading about hypermobile joints I came across Ehlers Danlos syndromes. It looked just like me. From head to toe, everything fit. I came back to the Rheumatologist and asked him about EDS. He told me “You don’t have EDS, it is very rare if you want to waste your time there is a doctor at a specialty hospital that knows about it but there’s no way that’s what this is and there’s no treatment for that, anyway.”

So I believed him and started his advice of looking into pain management for “benign hypermobility”. Nothing got better, so I took a chance and went to see this special genetic doctor. Turns out I was right, I had Ehlers Danlos syndrome.

Since this diagnosis, doctors have been able to do appropriate tests to find out I have esophageal dysmotility, gastric dysmotility, slow transit colon. I needed a feeding tube. I had my tube placed in July of this year, and I am feeling much better.

My physical therapist was able to properly treat me because they knew I had EDS.

Just because there is no cure for EDS does not mean that knowing doesn’t make things a little better for your treatment.

My EDS story is ongoing and complex, as all of our stories are. I am a nurse, a daughter, a girlfriend, a niece, a friend. I am an Ehlers Danlos fighter. I am not invisible. WE are not invisible!


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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