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.

Find this story helpful? Share it with someone you care about.

Related to Ehlers-Danlos Syndrome

The shadow of a man walking

When Fear Overshadowed My Relief Over Receiving the Correct Diagnosis

Fear doesn’t discriminate. A function of fear is to let you know when you aren’t safe. Fear is a protector, but fear can also be debilitating. This kind of fear makes your head spin as though you are on an endless merry-go-round, constricts your body, and shuts you out of the world. Fear is unfortunately a familiar friend. It first [...]
two women holding hands and walking in park

The Brave Love of the Woman Who Chose Me, Disease and All

I have Ehlers-Danlos syndrome. I also have in my life a woman who loves me — all of my pieces, together and apart (and they are so often apart). Who loves me when my joints slip in and out of place like the breath-holding, heart-pounding moment when cupped hands become laced fingers. Who loves me [...]
young woman standing on top of a mountain

To My Parents After I Was Recently Diagnosed With a Chronic Illness

I know it’s hard for you to see the child you’ve cared for facing challenges and to know there’s not much — if anything — you can do to help. I know you believe you’re doing all you can to make my new way of life just a little bit easier. I appreciate the early-morning [...]
Hand Painted Illustration of a Young Fashion Girl in the Rain

Sometimes I Wonder What It Would Be Like If I Never Got Sick

Sometimes I wonder what it would be like if I never got sick. What would it be like if I was not born with this gene, causing me to be sick since the day I was born? As a kid, I never knew I was sick. I knew something was wrong, and that I was in a lot [...]