Barby Ingle
Sep 4, 2017‚óŹ2 min view

Reflex Sympathetic Dystrophy

Video Transcription:
For me, when I got diagnosed, it was, "Finally." It was relief, and at the same time, I went home and started looking up my disease. I have reflex sympathetic dystrophy as my primary disease, and I've developed secondary conditions to that. And reflex is anything in your body that's automatic, sympathetic is your nervous system, and dystrophy is loss of muscle and bone. So I was definitely going through a lot and didn't understand it, and I couldn't set the expectation with the people in my life. So I was losing relationships and not able to communicate effectively. And then, once I had a name, it gave me some validation, and it also helped me set the expectation and communicate with the other people around me so that they understood why I couldn't always go to the party, or do the things that they were doing. And so, it gave me a way to talk to other people about what I was going through, as well as a sense of relief as, "Whoa I'm not crazy, there is actually something wrong, and I can now learn to manage it."