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 …
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 …