No More Monkey Bars: A 13-Year-Old’s EDS Story

Written by 13-year-old Isabella ‘Kitty’ Yim. Originally featured on folks.pillpack.com on January 30, 2018

Finding out something about yourself that you did not know before is terrifying. Especially if it is a disease. One that you can not get rid of and have to live with for the rest of your life.

The hardest thing I ever had to learn about myself was that I had EDS (Hypermobile Ehlers Danlos). It was horrifying for a little girl to hear the words: “You can not play on the monkey bars anymore.” I remember it like it was yesterday, having so much of my childhood ripped away and replaced with something else. I hate that memory.

When I found out I had EDS, I was only seven years old. I was at the doctor’s office. I remember getting pricked and poked with needles and other weird tools, and then the doctor saying some really big words to my mom. I was so confused. Why was no one telling me anything? What does that chart mean? What is going on? Questions fluttered around my brain as the doctor spit large words that I was too young to understand.

Then before I knew it, my mom held my hand and we walked back to the car. We drove and drove until finally, we were home. I was still confused.

We walked in and she sat me down in her room on her bed. She explained slowly. “You have EDS.”

I asked, “What is that?”

“It’s a disease,” she responded.

I did not know much about things like diseases, but what I did know was that diseases equaled gross. I had the picture in my mind that I had some infectious disease that was going to kill me and infect everything I touched.

Turns out that is not what EDS is.

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