Just when you start to think you know yourself ...
I recently found out, through a series of seemingly unrelated minor health disasters, that I have a genetic connective tissue disorder known as Ehlers Danlos Syndrome , or EDS for short. EDS involves connective tissue that is missing or weakened throughout the body, affecting multiple systems in sometimes mysterious ways. It can take decades to get to the point where doctors can connect the dots and make the diagnosis, and there is no cure. This recent discovery in my own body puts me in an interesting position from which to discuss living with disability, since I have always had EDS, but I only just found out. Receiving the news, I was flooded with emotion – grief for possibilities that – even now in my middle age – will never be able to come to pass in this body and worry for both myself and my children, each of which have a 50/50 chance of inheriting EDS from me. But I mostly felt relief at having a reason for all of the ways that I have been made to feel different and less than t...