03/09/2014

Now that I've told my whole story, (it's below if you want to read it) I just wanted to explain my reason for starting to blog about my experience. I've chosen to do this because while I was dealing with everything, I was consistently surrounded by people who were always healthy and didn't really understand me. At least, that's how I felt. I'm 16, I'm sure that's not uncommon. It became very frustrating for me when people asked, "Hey why don't you come to school anymore?" Because it took all my self-control not to reply "I'm trying my best to be here every moment that I can, bitch." Hopefully, I haven't responded like that to anyone thus far. I really am appreciative of my amazing friends for always trying to understand every detail of my disease. It really doesn't bother me when people ask about what JIA stands for, what does 'idiopathic' mean, and why don't I handwrite my notes? At least they're trying to understand. That's a few hundred notches above people who hear "arthritis" at the end and kind of tune out everything that came before it because they think they know already. So, I'm writing this for you, here and now, because I never want girls (or boys, whatever) in my position to be surrounded by people who feel the need to tell them to "hang on" or "it's okay". Because nothing is worse than waking up tired, spending your whole day being absolutely exhausted, nauseous, having a headache, being panged randomly with pain anywhere and everywhere, and not really feeling "up to doing something", and then going to sleep wishing it were a coma. So that's been the past three years (in about a week) for me. And 250,000 other kids in the US have exactly what I have. And that doesn't even include other chronic diseases. So I wanted to be a voice for other people in my position who need validation for their emotions, someone who truly gets it, or just to know that I'm not going to tell you a bunch of crap about the situation we are in. xoxo Malley <3