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The Gift Ehlers-Danlos Syndrome Gave Me


I can write a very long list of the ways my chronic disorder, and all the comorbid illnesses that go along with it, have redirected my life. At first I could only see the negativity. I felt robbed of my life’s plan. The bitterness and pain caused me to shut out most.

When my self-pity and anger festered too long, I realized I actually had a choice. I could isolate and distance myself from those who love me, or I could share my reality and welcome comfort.

What I found, at first, was that neither worked for me. Isolating people who loved me wasn’t the answer. I wrote hundreds of dark poetry, as I found writing to be a way of expressing myself. I felt an immediate high by releasing the negative energy from within onto a sheet of paper or my laptop. It was temporary. I shut out the absolute best people because I feared what would happen if I shared my story.

So, I did it.

Regardless, I exposed layers upon layers, detailing the journey I had been on since my symptoms started over 20 years ago. What happened next was the most painful and ultimately rewarding part of having a chronic illness. I lost friends. I was ridiculed, I was called a hypochondriac because “there is no way one person could possibly have so much wrong.” I was told I looked healthy and wanted attention. The gut-wrenching torture of hearing “friends” break me down in my ultimate time of need confirmed why I originally encased myself in a “protective shell.”

As “friend” after “friend” and even family members mocked me, an unexpected transformation happened. I had an epiphany. I realized my illness had given me a gift. It was weeding out the people I shouldn’t have in my life with those who deserved a precious spot. Old friends were replaced with new ones and my tribe contained to a select handful.

Now, when I look around, I have genuine, kind-hearted and compassionate people surrounding me. So, no matter how long a list of contention I have toward my genetic disorder, the gift it gave me outweighs it all. After all, isn’t life ultimately about being surrounded by the people who love you most? I sure think so.

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