The other day, a classmate and I were sitting and talking. We were both about 15 minutes early for lecture, so we sat and chatted. At first it was all small talk, the usual "What's you major?", "What do you think of the class?", and "Do you like the professor?". We had a great conversation going when I turned to start unpacking the materials for class from my backpack. "Why are you in the wheelchair?", she quickly inquired. That's a question I've answered no less than a dozen times in the last three days alone, and yet, I stuttered. "My feet are turned in. I can't move them," I finally replied. "Do they hurt?" "Yeah, it hurts all the time, but I'm pretty used to it," I said. "All the time?" "Yep, 24/7." Here's where she blew me away. "I would rather die than live with that!" I didn't have a good response for that at the time, but I do now.
So to the girl in my class who would rather die than live with my chronic illnesses, I am not going to tell you that life with chronic illness doesn't suck sometimes because it does. Yes, I spend a lot of time in the hospital. I take a bunch of medication. I get poked with needles a lot and I have had plenty of uncomfortable tests, procedures, and surgeries. None of it was fun, but it was all necessary.
What you don't know is that when you live with chronic illnesses, you are forced to try to compartmentalize health from the rest of life. It's a challenge and not completely feasible, but it helps some. This means that my health can stink, but life itself can still be pretty great. For example, I can be having a huge dysautonomia flare, but I can be doing really well with my classes and taekwondo. In that case, my health isn't great, but that doesn't mean that my whole life is bad.
And one last thing, if you'd been in several life-threatening situations that you weren't expected to survive at a young age, you learn what really matters. When you go to the brink of death and come back from it multiple times, you realize how truly precious and fragile life is. So then the little stuff doesn't seem so bad anymore.
I am a 20 year old junior at the college of my dreams. I am studying Emergency Medicine and Communication Rhetoric and minoring in the Administration of Justice and National Preparedness and Emergency Management certificate. At some point, I want to go and get my paramedic certification when my health allows. I have several chronic illnesses and this blog and website serves as a place for me to share my journey fighting CRPS and my other conditions. I hope that this blog can also serve as an outlet for raising awareness for rare diseases. Thanks for reading and I hope you enjoy! Feel free to comment; I'd love to know what you think!