It's Just Growing Pains

 

The journey to understanding is often filled with misconceptions, fallacies, and ignorance, but when you arrive at your destination, everything seems clearer. Almost as though the fog has lifted and from atop the mountain you can finally view everything below.

Most of the time, when I share about our journey with chronic illness, it is from the vantage point of the mom and caregiver. However, when it comes to Ehlers-Danlos Syndrome, this is a journey I've been on my entire life, even when I was unaware.

Jayde-Rhiannon grew up hearing her doctors consistently state a phrase that made me cringe, "It's just growing pains." I cringed because, as a child, I routinely heard the exact phrase. I remember being in my early teens and retorting, "Well, I really need to stop growing!"

When I was younger, I excelled at gymnastics. Friends thought it was neat I could do a split with the greatest of ease or contort my body with my legs behind my head. The most comfortable way of sitting resembled my legs in the shape of a W. My Mommom would tell me I was going to be bow-legged. I can still do most of these things, except my joints have taken quite a beating over the years. My knees popping out whenever I descend stairs makes me more prone to fall. I have degenerative joint disease in my shoulders and spine. All my scarring is atrophic due to a defect in my collagen. No, supplements will not repair or replace the faulty collagen. My ankles sublux while I'm sleeping. Daily low-impact exercises help, but that is a double-edged sword because as much as exercise helps, sometimes it makes it easier for my joints to slip, especially my hips.

Thankfully, Jayde's diagnosis came in her teens. We hope the aids, braces, and therapy will lessen her pain and inflammation later in life. But even with an early diagnosis, it doesn't negate her daily symptoms or the stigma she faces from the lack of understanding when she leaves the four walls of our home.

EDS is known for its thin, translucent skin. Living with this illness teaches you to have "thick skin." I've lost count of how often I've been asked, "How did you get that bruise?" Only to answer, "I don't know." Over the years, even when I wasn't in an abusive relationship, friends and co-workers believed otherwise. My ex-husband routinely mocked that a fly could land on me and I would bruise. He called me Grace because, let's face it, when I am falling down the stairs and tripping over my own two feet, I am not the most graceful person.

Long after my ex was out of my life, his critical words replayed on a loop whenever black and blue marks covered my arms and legs. Overhearing an acquaintance ridicule me because I sprained my ankle, yet again, made me feel like a child who wanted to hide away, even though I was a grown woman in my forties. I discovered this journey has an interesting way of showing who your people are, and I am grateful every day for them.

Learning I had Ehlers-Danlos Syndrome took every stigma I held about myself, and smashed them to the four corners of the earth. It was freeing. I no longer despised a body that had failed me way too often. I finally understood it, even if others didn't. I only wish is that it had not taken almost 48 years to arrive at my destination. 

#EDS #myEDSchallenge  #ehlersdanlossyndrome  #ehlersdanlossyndromeawareness #togetherwedazzle #zebrastrong