“My EDS Journey: Don’t Call me Humpty Dumpty” by Anonymous Teen
It was the weekend I’d been waiting for: the 14U Championship swim meet. After surviving my middle school years plugging along in the swimming pool with minimal success but having a lot of fun socially, I had finally sprouted from puberty and was ready to compete.
I was in 8th grade at that meet and the first two days were a raging success. I broke team 13-14 girls swim records. I got a national swim cut. Then I dove off the blocks for the 100 freestyle.
It’s still a bit of a blur. I felt an immense pain in my shoulder which had popped out as my arms hit the water. From the stands, people were screaming to my mom, “Something is wrong. Avery is hurt”. My mom wasn’t concerned at first because she thought I just dove too deep. But I had not. As the pain pulsed through my body, I was sure I didn’t want the lifeguard, who was now hovering off the high dive ready to come in after me, making a rescue. I popped my shoulder back in and continued the race with one arm kicking. As I pushed and got myself out of the water - I cried. It’s the only time in 17 years I’ve ever cried on the pool deck publicly.
I’m a pretty tough kid. Having been raised with two brothers, I’ve grown thick skin and a tolerance for mental and physical pain. But that day launched a journey that has challenged my swim career and my life.
The shoulder subluxation was just the start. Just a few months later after weeks of PT and finally getting back in the pool, I would be playing Just Dance at school when I cascaded to the ground in pain. My knee just gave out and was swollen. An MRI showed my knee subluxed and sprained my MCL. It was the first of several knee subluxations to follow and it was when I first heard about Ehlers Danlos Syndrome.
Ehlers Danlos Syndrome is a group of inherited disorders that affect your connective tissues primarily your skin, joints and blood vessel walls. People who have Ehlers-Danlos syndrome usually have overly flexible joints and stretchy, fragile skin.
I’m actually very lucky. After several tests, I’ve learned I “only” have the hyper mobile factor of EDS. A heart echo came back clean. But I’ve had to learn that continuous, non-stop strength training is not a luxury or a plan just to improve athletics. It’s a prescription for surviving a syndrome that’s both a blessing and a curse. Sure, EDS makes for weird human tricks at parties. as my limbs stretch in bizarre way. But having EDS also means that I miss out on some activities with friends. I can’t go tubing or skiing. I also had to tell swim team friends do “not” grab my foot while passing me in the pool because they might just yank my knee out of the socket. Just this past summer, I fell running on the pool deck when my knee went out of its normal path. That time, I also fractured an elbow.
I’ve heard all the jokes. People said I should be put in bubble wrap. Some even jokingly called me Humpty Dumpty from the old nursery rhymes. He’s the guy who sat on a wall, fell and broke apart. But the painful injuries that hurt my body and set me back in my favorite sport were not funny.
This health journey is one I’m still learning to live with. It means not ignoring my three times a week physical therapy exercises. I work with a strength trainer. I’ve have to watch my food intake and make sure I get rest. We are always looking for medical breakthroughs for medications or foods that may help strengthen the ligaments and tendons in my body.
I may not be able to lead a carefree and casual teenager life. But living with EDS has taught me how to be resilient and how to pivot when life throws you curveballs. I may “fall apart” like the nursery rhyme Humpty Dumpty. But each time, I put myself back together with the help of medical professionals.
Living with a lifelong health condition is a challenge I’m up to facing and I one day hope to help another person facing this and other health conditions. My hope is to swim in college and pursue biology or another science and eventually attend medical school.