The story of Paula
My name is Paula, I am 34. I have suffered from chronic pain all of my life, and from various strange and weird symptoms. I was always told by doctors that “it was all in my head” that “I did it to myself on purpose”. My teachers always got mad at me, my friends did not understand me. However, I had the support of my amazing family, especially my mother. At age 25, after 17 sprains in my right ankle, I decided to investigate on the internet. I discovered that I suffered from EDS (Ehlers-Danlos Syndrome). A genetic disorder that affects the connective tissue in my body. Basically I look younger (20), but my inside (organs and bones) is older (70). I suffer from things I should not at my young age. It is very hard to treat, I take many medications just to be alright. Had I known when I was young, my life might have been less painful. It is important to learn and disseminate rare diseases. To stop the bullying and the stereotypes. Just because we look “ok” to everyone else does not mean we are lying. We are sick, and need patience and support. Everyone has somebody in their life with chronic pain. Ask them what they need, we usually say we are OK so we don’t worry anyone, but we suffer a lot.