Why I Won't Let My Heritable Disorder Define Me or My Kids

To the diagnosis that changed my life but doesn’t define me:

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

When I first heard your name and started to learn about you, I actually felt a twinge of excitement. That’s right, excitement. For more than six years, I had chronic and escalating pain in my joints, experiencing numerous dislocations and subluxations – literally from my head to my toes. Your name, Ehlers-Danlos syndrome (EDS), didn’t scare me at first. It didn’t make me angry or sad. I had felt angry, sad and confused for years; what I felt was, for the first time in a long time, relief. Your name gave me back my sanity, my faith in myself and a path to follow.

For years, doctors brushed off my suffering as either an exaggeration or delusion. No one could visibly see why my body was failing to stay together, and no tests were able to show why I reported such high and chronic pain. So when the geneticist told me I had this heritable connective tissue disorder — that essentially the collagen that compromised all the tendons and ligaments in my body were faulty — I felt relief.

Those around me certainly didn’t share my initial sentiment. My family was confused, angry, sad, in denial and even grieving for me and themselves. They looked to me with quizzical expressions trying to understand why I wasn’t screaming from the rooftops. Don’t get me wrong, I had my days when I would wonder, “Why me?” but I knew there was still so much to learn about EDS and so much to be thankful for. I had a loving husband, two beautiful children and a career that brought me joy.

After years of inexplicable medical issues, it all was making sense to me, and for a good long time that was enough. However, this past year, the definition and clarity you gave me started to turn to anxiety; after all this is a heritable disorder — one that has a 50/50 chance of being passed to my children.

Now EDS, this is where my appreciation for you is being tested. I watch my children play in the yard, on various sports teams and with their friends through a lens colored with splendor and uncertainty. Every injury they have, every medical problem they encounter is viewed through the eyes of EDS. Is this just a kid being a kid? Is this painful injury going to follow them for the rest of their lives? When I’m having a bad day, what does that signal to them about their future? Am I strong enough to make it through each day one at a time? Am I strong enough to carry the weight of you for them?

I admittedly am not the best at self-care, but with my husband at my side, I know we will not stop fighting until we’re sure they’re protected, they have the best care and that we wrap around them a medical community that will support them, guide them,and help them to live the beautiful lives they’re meant to live.

So while in those early months I let you define me — I reveled in it really — I will not let you define who I am or who my children are/will be. I’m not broken, as so many are quick to say. I’m not weak or fragile. I’m strong. I’m real. I’m whole. You’ve changed us, altered our views of living life, enhanced our appreciation for the small wonders of being a family and being together, but you will not define us. Saying your name doesn’t scare me; you’re a part of who I am and what I’m still to be – but you aren’t all of me. You will be a part of who my children are, you will teach them internal strength, courage and kindness toward others – for we never truly know what’s going on in the shadow of people’s lives. You’ve changed us, but you don’t define us. I am an EDS warrior.