My Tips For Anyone Diagnosed
The tips that I would give somebody that's newly diagnosed or just coming into a diagnosis, first, learn about your disease and what you're going through. The more you know about it and the more well-rounded you are, the better you're going to be able to communicate, and I think that everything starts with communication when it comes to getting better daily living.
Don't be afraid to speak up and speak out. When you speak up, you need to be able to say...for instance, when you go to the doctor, use your adjectives. My pain is burning, shooting, stabbing, bone pain, cutting pain, searing pain. Whatever type of pain you're experiencing, use your adjectives when you're describing it, especially with your providers, so that you can get the best treatment for the type of pain that you're going through. I used to think that all pain was the same, and after developing reflex sympathetic dystrophy, I realized that I needed to not just go in crying and saying "I hurt everywhere. Fix me," but actually use my adjectives and communicate what I was literally going through. So I think those would be the two biggest things.