Published: 17/04/2023 Tags: Stories

Diagnosis taught me to listen to my body

I was never a kid that needed a doctor.

At about 4 years old when my mom noticed that my legs and arms didn’t look completely normal, bending backward in a “strange” way. The pediatrician dismissed it, saying I’ll grow out of it. I never thought much about it, only using my flexibility as an advantage as a gymnast and I grew up thinking that “growing pains” were normal for all teenagers.It was only when I reached 19, that something changed and my journey with my fight for a diagnosis began.I was suddenly experiencing so much pain throughout my body that I couldn’t even get up to go to work. I then had a severe bacterial and viral ear infection and then a sinus infection and I was ill for months. My fingers and hips started dislocating just from walking up a flight of stairs or squeezing a lemon. I had a nose operation and grommets put in my ears. I was developing shoulder knots so painful that I would cry.I seriously started to worry when I started dropping weight, losing over twelve kilos within a year, and having to drink Ensure on top of extra meals to try and get it back up. But my weight kept dropping until I was severely underweight and we couldn’t understand why. SOMETHING WAS WRONG WITH ME! I COULD FEEL IT AND I KNEW IT!I saw doctor after doctor after doctor and had so many blood tests that all came back clear, even though I was covered in bruises so badly that they covered my entire legs and arms. Not one doctor could find what was wrong and I gave up hope when the last doctor I saw said I probably just had an ‘eating disorder’ and told me to keep a food journal. This was not true! I was always hungry and always eating. At this point, I started to believe that I was going crazy.One day, I was standing in my friend’s kitchen and their mom, who works at a blood lab, saw me writing “banana” in my food journal and questioned what was going on, commenting on my bruises. I explained it to her in tears.She was the FIRST person to ask me, “How are your joints?” I immediately showed her my legs and subluxation. She then said, “I know what you have!”She referred me to a geneticist and my hypermobile Ehlers-Danlos syndrome (hEDS) was finally diagnosed. That feeling of knowing that it wasn’t all in my head was the most amazing feeling in the world. I was dropping weight because my body wasn’t absorbing nutrients. We later found out that my late grandmother had EDS too but was misdiagnosed with fibromyalgia and chronic fatigue syndrome.That two-year journey of battling with the fight against my body, the horrible feeling of being told that nothing was wrong when I knew something was, taught me so much about the power of hope and most significantly, the importance of LISTENING TO MY BODY!I still often fight with my body and feel angry with the pain that I cannot control, but I will forever be grateful that I didn’t give up.It wasn’t hoof beats that those doctors heard, it was a zebra.I AM A ZEBRA!

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