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When It Finally Hit Me That My Condition Has No Cure


When I first began my journey with my Ehlers-Danlos syndrome (EDS) diagnosis, I had read that it is an incurable, life-altering, lifelong illness that could end my life. But because of the whirlwind of emotions in finally finding the answer and diagnosis, and waiting for the appointment with the genetics team, it didn’t exactly “click” at first. I was wrapped up in so many emotions of possibly knowing what was wrong with me, that my brain didn’t seem to understand that part of it.

Within in minutes of officially being told, “You have have Ehlers-Danlos,” I began to celebrate. I had the answer! I wanted to go to every doctor who told me it was all in my head and flaunt it. The doctor did once again remind me there is no cure, no set treatment, and that it can be life-limiting, but my mind seemed to put that in the back of my head.

It wasn’t until I was leaving the hospital that it hit me: Ehlers-Danlos has no cure, no treatment, is life-altering, and possibly life-limiting.

I had to immediately sit down.

A flood of tears came. Tears of sorrow, loss, pity.

I can’t just take some medication and say, “all better!”

I can’t have be cured by a surgery and only have a scar to show my battle.

I am not going to just “get better.”

Suddenly, I became one of the many people around the world who fight every day just to survive.

And although I had been doing this prior to being diagnosed, something about it being given a name sat on my shoulders like a ton of bricks.

It took a while to accept what had just happened. It took a while to understand that having a 24/7 pity party wasn’t going to make my Ehlers-Danlos go away.

Getting used to being a chronic patient took some time. After a while, I wrote a goodbye letter to my former self — the one without the incurable disorder, the one who just wanted a “normal” life.

It’s a long road my friends, but you aren’t alone.