I was a sickly child – fussy and colicky — right from birth. My parents would drive around our Houston neighborhood for hours until I fell asleep. I abhorred naps and never wanted to be put down. When my parents did lay me down, I’d cry until my voice gave out.
But I Didn’t Grow Out of It
As I got older, sleep didn’t come any easier. I’d lie awake for hours in the dark. When I’d finally drift off, I’d wake up a few hours later screaming from painful muscle spasms in my legs. My parents wouldn’t hear my cries at the other end of the house. I couldn’t even think of walking to them for help because I was in so much pain. Instead, I incessantly rubbed my knotted muscles until they relaxed enough for me to fall back into a fitful sleep.
There were other things, too. I complained about the Florida heat where I grew up. I had constant heat rashes and felt like I was being steamed to death by the humidity.
I overheard what my parents, coaches and other kids thought of me: I was weak, out of shape, a drama queen. The consistent message at home was that my parents didn’t raise quitters, so I overcompensated, pushing through the pain. No matter what I tried — tennis, Little League, running — I’d start out strong, but midway, through I was spent. Despite being active, I had no stamina, my chest ached and I was constantly winded and tired.
While playing tennis in high school, I suffered a severe shoulder and had extremely limited range of motion. Though it felt like someone jammed a screwdriver into my shoulder joint, all my X-rays and MRIs seemed normal. When I began experiencing similar pain in my other shoulder, imaging came back clear on that one as well.
Medical experts said there was nothing wrong with me. The word hypochondriac cropped up. What I was diagnosed with: severe depression and anxiety. I began wondering, was it really all in my head? As a teenager who didn’t know how to advocate for myself, I stopped talking about the pain.
Finding My Voice Again
After graduating from college, I moved to Maine with my new husband, Fred. For eight years, I managed a corporate bookstore, which came with long hours and a lot of physically intensive tasks. As always, I pushed through the pain.
When I became pregnant, I could no longer ignore the ways my body was failing me. I couldn’t eat more than a few bites without throwing up. And, after giving birth to my five-pound daughter, Eisley, I was too weak to hold her without assistance. I began searching for answers again.
Four years ago, I found a new doctor who was willing to listen to me without judgment or preconceived notions. He had me write a health history, ran lab work and sent me to a rheumatologist. By my third visit, I had a diagnosis: Ehlers-Danlos syndrome (EDS), a genetic connective tissue disorder. Essentially, the collagen throughout my body is breaking down, causing my joints to be loose and unstable so they sprain and dislocate easily. It also affects my organs — my asthma, and many of my GI issues can be attributed to the break down of collagen.
Getting a diagnosis was bittersweet. After years of being doubted, there was a sense of vindication. But had I been diagnosed a few decades earlier, I wouldn’t have pushed through the pain, causing myself more damage.
I also learned there was a 50/50 chance that EDS could be passed onto my child. I began watching my daughter for symptoms and noticed she had a lot of the characteristics that indicated EDS. Her gait was loose and her leg muscles easily cramped and fatigued.
Last year, at age six, her diagnosis was confirmed. I felt terrible that I’d passed the condition onto my daughter. Sometimes I asked myself if I would’ve had a child if I’d been diagnosis before getting pregnant. It’s really difficult knowing that Eisley’s life is going to be more difficult because of a genetic quirk.
On the other hand, her EDS experience will be so different than mine because of early intervention. Last year, she spent several months in intensive physical therapy and occupational therapy. Because I’m also in physical therapy, she and I make specialized exercise part of our daily routine.
Now that I know what we’re dealing with, I stay on top of new research and emerging treatments. But most importantly, I listen to her and never negate or doubt her experiences. The disease is what it is, and all we can do is our best when it
comes to living with it. But, I know from firsthand experience — living with
it becomes a lot easier with support from your family.
Resources
The Ehlers-Danlos Syndrome Society
Mayo Clinic’s Ehlers-Danlos Page
*See Part Two of Katherine Wight’s Journey.