Whether it be movies, books, or social media, we are inundated with the attraction of being a badass. It might be the quiet, humble hero or the “genius, billionaire, playboy, philanthropist.” We look to these people because they are confident in who they are and they make a difference. My stepdaughter’s first swear word was …
Yes, that is a Friends reference. After I took part in the Ehlers-Danlos Society’s Awareness Challenge, I went pretty quiet for a couple months. The reason I wanted to use: “I needed to focus on my family.” In reality, I unconsciously shut down my ability to be vulnerable publicly. It’s almost as if my brain …
After reading endless stories of how injuries during normal childhood have followed those with EDS, I am now more appreciative of my mother’s over protection. One of the things I’ve seen with EDS is that once you start having surgeries for issues, you don’t stop. It becomes surgery after surgery. There are many people who …
A few weeks ago I bought a head of garlic; not surprising, I cook with garlic almost every day. It was the most perfect looking head of garlic I had ever bought. Multiple people commented on its beautiful qualities and it became very popular in our household (we’re weirdos, I know). When I broke it …
My first real memory of having EDS symptoms in school was in 4th grade. We had a substitute PE teacher and she made us run laps around a field. I have always had bad allergies and asthma, so not only was I a wheezing, sneezing mess, I also couldn’t keep up with the other kids …
“A day with EDS.” The idea of describing this makes me want to protect everyone I know from the discomfort. I don’t want people to feel bad for me; I don’t want to be associated with this condition. I don’t want people to be uncomfortable. That’s where I stop myself, because when we’re comfortable all …
My mom sweetly calls me her problem child because since day one I was a medical diagnostic failure. Dozens of doctors listened to my symptoms and referred me to the next specialist. After many years I gave up trying to understand. No matter how much I wanted to believe in doctors, there’s only so many …