8 hours ago
I’m officially a zebra! I had my geneticist appointment today and received a diagnosis of Ehlers-Danlos syndrome hypermobility type, also known as Ehlers-Danlos syndrome Type III, and according to my doctor, “The worst case of Mast Cell Activation I have ever seen.” This could be hard to hear for some, but for me, it was a wonderful day that included this free book!
I now have validation about a thought that’s been in the back of my mind since I can remember. The thought that I’m different. A feeling that wasn’t really validated by a lot of the people around me. It’s tough when you’re expected to be on the same level as your peers physically, and you’re just not. No matter how hard you try or how much you want to be, you’re. just. not.
For a large part of my life I would beat myself up for not being able to do things as well as my friends, I couldn’t run as fast, exercise as hard or handle stress in the same way. Why was I allergic to everything, why couldn’t I breathe, why did my body hurt and get injured so much? No one knew.
When you’re too complicated for the average doc to figure it out, they usually jump to the conclusion that you’re making it up. This is the worst feeling in the world, to know you’re not crazy, you have a real issue and need help, but there is none. Today I found help and it feels amazing! I have an answer, I have a reason and I have a plan and it only took 38 years lol.
I know there’s still a lot that’s unknown about EDS and there’s no cure, only just management of symptoms. But now I know what to focus on managing, and for that I am beyond grateful.
I wish I could go back to the little girl who thought she wasn’t good enough and have a chat with her. I would tell her that it’s not her fault and some day it’s all going to make sense. To stay strong because the road ahead is going to be a rough one but at the end, she’s going to realize a lot of wonderful things about herself. That she wasn’t weak, she was strong, she wasn’t crazy, she was in pain that no one could see. That she wasn’t less than everyone else, she had been living with something that would break most people, but NOTHING would ever stop her from living.