Anyone who has known me well since I was about 18 has known that I am different, that I am usually hurting. I try to hide it with a smile, but sometimes the mask falls off. I am learning to be okay with that. If you didn’t know me well, you might have assumed that I was looking for sympathy, or that I was a hypochondriac. It’s a common misconception about people with rare disease and invisible illness in general, especially before its been diagnosed. I’m learning to be okay with that too.
When I was younger it was not so obvious, but there were subtle signs: My extra-bendy body that let me do well at gymnastics, the fingers and toes that turned white or even blue when exposed to cold, the rashes and weird reactions, the belly issues, the clumsiness (OH, THE CLUMSINESS!), and the seemingly random bruises, aches, and pains.
As I got older, the fitful spurts of pain and illness became a constant presence in my life. I had always been hypermobile, but I developed some of the more complicated manifestations of EDS such as joint pain, fatigue, and chronic migraine/headaches.
Although I just received my diagnosis, the one that finally connects all of the others, the truth is that I learned to sit with the pain along time ago. I learned that fighting it doesn’t help. You have to accept that it is a part of you, and move on with your day as best as you can. Some days are better than others.
So today, I have a name for the pain that is an exponentially increasing presence in my life. That name is Ehlers-Danlos Syndrome. It happens to be a genetic disease that has no cure. You might think I’d be upset, but I’m really not. I have always managed my disease piece by piece, day by day, as it comes, and I will continue to do so. I can do this. But now, I can tell people WHY I’m doing this, what it’s called. I might even be able to help other people learn about how to do this too. And that right there, that’s powerful. It’s why I feel an overwhelming sense of calm rather than panic. It’s everything and nothing all at once, and most of all it’s going to be okay.