Life With EDS
Life with EDS isn't easy. Not in the slightest. It's hard. We can't do what most can. We can't play contact sports. We can't do anything competitive. Women can't have kids because it is a huge risk, so it's not recommended. The saying "It's not like it'll kill you" is false for us most of the time. Most of the things people ask us to do CAN kill us. It's truly a bad thing to have to feel alone every day. Especially if your a kid with Ehlers-Danlos Syndrome who's getting bullied. It hurts and it makes us feel even worse than we already do. Support is the one thing we need that we lack. It's difficult to find that support because those who don't know about it think those who have it are "fake" and liars and other things. It truly makes trying to live like everyone else difficult. Imagine not being able play with your friends as a child, or not being able to play the high school sports you want to. Imagine having a dream of having a kid and being told that it's not recommended because it could kill both you and the baby. It's painful. It's really painful to watch everyone live the life you wanted to live, but can't because you're stopped by this medical condition. Please be cautious of those with EDS, and instead of thinking we're fake, be there to support us. It would be greatly appreciated in helping us find that life saving cure that many died waiting for or died to let us know that we might have it or do have it. It's a life-long battle we face from the time we are created to the time we meet our fate. Support is the one thing that may just end our lonely feelings and help us wait longer for the cure or for a treatment. Please don't take us for granted. We may look like you, but look deeper. You'll see that in reality, we're two totally different people.