Published: 23/02/2023 Tags: Stories

I was incredibly relieved to finally have an answer

I was around eight years old when I realized that I wasn’t quite like other kids my age. A constant bombardment of “why do your arms bend like that?”, “How are you so flexible?!” and “your skin is SO soft” I never knew what was wrong with me but I knew I didn’t quite fit in. Except for at the gym, I was enrolled in gymnastics at the early age of one and a half and I fell in love. I excelled because of my extreme flexibility and was quickly moved up to a competition team.

My first injury occurred when I was in first grade, I fell off the beam and sprained my ankle. Not the most typical injury you see in a 6-year-old, and it only continued from then on. I fell off the beam again when I was in second grade and injured my elbow. I had a hyperextension of -22°. This just got excused as “kids are bendy” which was true to an extent but there was much more going on. I was constantly out of gymnastics due to injuries, I had numerous ankle sprains, sever’s disease, gymnast’s wrist, knee hyperextensions, broken fingers, broken toes, elbow sprains, and many dislocated joints. I had to sit back and watch as my friends moved up levels and grew to be amazing gymnasts while I was stuck in orthopedic hospitals.

I was always getting dismissed by confused doctors who just simply told me to quit the sport I loved so much. For 10-year-old me, quitting was not an option. I would become infuriated when they told me to just give up. All I wanted was to be normal, I didn’t want to be stuck on the side-lines anymore. I pushed myself through so many injuries and due to the culture of gymnastics, none of this was seen as harmful. I was praised for it. My coaches encouraged me to keep going despite being in excruciating pain because it was showing my ‘commitment’ and ‘devotion’ to the sport.

When I was in seventh grade, I switched gymnastics programs because my body just could not withstand the intense demands of my current competition team. Although a few of my overuse injuries and some of my overall pain decreased after switching programs I was still frequently injured. Except for this time, it was unexplainable injuries, no one could tell me what was wrong. I was getting bounced from doctor to doctor, each one just as confused as the last. I had a recurring shoulder injury that no one could figure out. I had subluxations from something as small as a gentle push, I could no longer open a door or even hold a cup with my left arm. I was beyond frustrated, and no one knew how to help me.

I had an MRI ordered 2 different times, both of which came back completely clear, with no tears or anything. The results shocked both me and my doctors. It was at this point that my physical therapist asked if anyone had ever mentioned Ehlers-Danlos syndrome to me. It had been tossed around here and there but no one took the time to look into it. I started doing some research on my own and quickly became very interested in EDS. I fit practically all the criteria needed for a diagnosis. I brought this up to my mom and she scheduled an appointment with a geneticist at Children’s Hospital. For the first time, I felt listened to and I felt understood. After a long list of questions, the doctor performed a physical exam and said I was the most hypermobile person he’s ever seen for my age. The genetic counselor looked at me with wide eyes and said “oh… you weren’t lying that you’re flexible..”

My doctor was able to make a clinical diagnosis of Hypermobile Ehlers-Danlos syndrome (hEDS) and referred me to a cardiologist for Postural Orthostatic Tachycardia Syndrome (POTS), which I was also diagnosed with at a later appointment. After receiving my diagnosis everyone asked me how I was doing and if I was okay. In fact, I was more than okay, I was incredibly relieved to finally have an answer. I am so grateful to have my diagnosis. For years I struggled with feeling like I was over-exaggerating or like my pain didn’t matter because I was ‘too young for all of that’. Sharing my story and advocating for kids with chronic illnesses is so important because although it may not be common, we do exist. We deserve to feel heard. We deserve to feel validated. We deserve to be recognized. My diagnosis does not define me, but it will always be a part of me.

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