Thriving with EDS: First Things First – Accept the Diagnosis

Thriving with EDS


First Things First: Accept The Diagnosis


It wasn’t until my second neck injury and my second dislocated knee, that I finally had to admit to myself that I have this condition. I need to accept my diagnosis because aging and a connective tissue disorder didn’t quite mix – to say the least.

Yes, the genetics report came back positive for not one but two variant connective tissue genes. Yes, I was diagnosed. Yes, I knew I was different and felt different. But, no, I didn’t want to accept this. I tried a year-long denial of the disorder. Basically, I ignored it. I ignored my body. I put all the physical problems plaguing me on the back burner and did not put a team of experts together for myself and condition. I just wanted natural remedies to cure it all. I wanted an all natural approach. But was this doable? No. I had already proved that I couldn’t survive without the two abdominal surgeries in 2017. I had 5 organs removed from my body! All struggling in some way or another. My problems were nothing that eating vegetables and avoiding most of life could fix.

So, there I was sitting in bed, unable to move my neck without losing consciousness due to my neck being so unstable. There I was booking another doctor’s visit and trying to avoid an Emergency Room visit and call to an ambulance, which I found embarrassing and frustrating. People didn’t know what EDS was in the ER. And so, they certainly didn’t know how to treat it. I needed specialists, yet I lived in a remote area with very little knowledge of rare diseases.

First thing was first, I had to accept my diagnosis. From there, I could advocate for myself. I had to admit that I had Ehler’s Danlos Syndrome. I had EDS.

This was not easy to admit. I had my pride blocking me, but this condition was humbling me. Not being able to get up from the floor with my neck out and feeling so extremely dizzy that it felt like a loss of consciousness and control was my bottom. The bottom being that place that I could not allow myself to go further down. From there, being only in my thirties, I had to ask for help. Then, I need to accept the help. First things was first, I had to take the condition seriously and accept that this was the genetic “hand I was dealt.”

I had to ask myself a very emotional question, “What does fully accepting my diagnosis mean?”

I realized that I had to recalculate the life that I thought I would be living. I had to readjust my hopes, dreams, and expectations of myself. I had to reconsider my purpose, work, etc. I had to recraft my life to fit my diagnosis and make the best of it.

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