My Ehlers-Danlos Syndrome Diagnosis Gave Me Community and Peace


When I was diagnosed with Ehlers-Danlos syndrome (EDS) 18 months ago, I threw myself into the EDS world, the chronic illness world and the blogging world. I soaked up all the information I could find and shared my own journey in deep and vulnerable ways.

Without a diagnosis, I had spent 30 years in the lonely, barren wasteland of pain, anxiety, confusion and fear. Then when a diagnosis suddenly fell into my lap and all the hundreds, if not thousands, of medical anomalies in my life suddenly made absolute sense — right down to the smallest detail — my life changed for the better.

It’s not that I wanted to be unwell. I wouldn’t wish this on my worst enemy, but the reality for me was that I was already ill and had been my entire life. A diagnosis was the holy grail that I had been searching for as long as I could remember. I truly wish the diagnosis was at least something that could be fixed, and I’m shattered that it’s not. But worse than that, it’s also genetic, and my faulty genes have been passed on. But simply in terms of getting better care, more empowered prevention and belonging to a tribe of people just like me, this was a godsend in every sense of the word.

Diagnosis became a congruent part of the person that I always had been. I often read about people who grieve for the person that they used to be, and my heart aches for them. It truly must be awful because they once were healthy and strong.

For me, however, there wasn’t a “before,” and there will never be an “after.” My diagnosis, in many ways, was about coming home. I had never quite fit in my whole life and never had any idea how to even begin to express it or to even understand why I was so different.

But my diagnosis gave me community and peace. My diagnosis meant I made sense for the first time ever. I was so excited on all kinds of levels and spent the next year working hard on finding ways to manage my life better. While the journey was more a mine field than a yellow brick road — with more setbacks than I felt able to manage — it was character building to say the least. And now, 18 months later, I’m starting to feel as though I’m coming out of the fog to a place where I can start to build what will be my new normal.

This new world I’m entering is an interesting place that I barely recognize. Many of the people who were always in my life are no longer around me and there are many new faces in their place. There are fewer faces on the whole, but that’s all that I can manage now.

I’ve walked through a season of deep loss, confusion and frustration, and without building this up into something bigger than it is, for the first time in my life, I quite like the person who is emerging. I’m stronger than I ever knew I could be, I have way less baggage holding me down and I’ve learned to use words I’ve never uttered before like “self-care,” “rest” and even “no.” I’m also learning not to apologize all the time.

I’m learning to be comfortable in my own space, not to envy the lives and worlds of others. And through my writing, blogging and simply sharing my journey, warts and all, I’m slowly starting to learn to find my voice and my whole identity.

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