Well…it’s been a day or two (or like 4 months) since I’ve written on here, but I didn’t want to write unless it was about something I was passionate about, or unless there was some major updates about my life. I finally was inspired about something to write about- adjusting to life with chronic illnesses. So… here we go gang! 🙂 If you missed my past two blog posts, check them out here and here!
After many many trips to many many doctors, Dr. Patel looked at me for about five minutes and was able to diagnose me. At first, I felt like laughing. It was so strange to see how perfectly the diagnoses fit with everything I’d been feeling, like finally completing a difficult puzzle. Every single symptom I was experiencing then, and every single unexplained symptom I had ever experienced had just been all connected together with two little acronyms. Science is pretty freaking cool. That grateful and happy feeling unfortunately didn’t stick around though, and realization set in about what this meant: all the crappy stuff I’d been dealing with up until then wasn’t going away, and there wasn’t much I could do about it.
I remember feeling two main things: anger and defeat. Those feelings still come and go, but I feel much more secure and much more at peace with my diagnoses. The feelings I felt initially threw me into a bad place. It seemed like my life had been taken from me. Would I be able to continue theatre? Would I have to drop my hard classes? Some nights I couldn’t get my homework done because of how I was feeling- would I be able to stay at school? I look back at my reaction to my diagnoses and I wish I could say that “it all seems a little silly” and “how could I have even thought that”, but the truth is, these are still questions on my mind. The difference between then and now is that I’ve accepted that my illness means I’m going to have to make some changes- I’ve accepted that my health needs to come first, no matter what needs to change in order for that to happen.
Another adjustment that had to be made was another internal and difficult adjustment to dealing with people who invalidated me, and to dealing with people not caring about what I’m going through. That statement makes it sound like the people I deal with are horrible, but they’re not, and this is unfortunately a journey that every person dealing with chronic illness has to face. If you’re reading this and this is brand new to you, use this as a wake up call, use this information to become more aware, more educated, more empathetic towards people with chronic illnesses- and honestly, people in general.
Although it seems like it should be common knowledge, before I was living it, I didn’t ever really think it through all the way: you don’t get used to being in pain. I am in pain pretty much constantly, but that doesn’t mean that it hurts less since it happens all the time, it just means it sucks, all the time. I don’t get used to any of my symptoms, unfortunately. I don’t get used to almost falling over every time I stand up, I don’t get used to getting out of breath doing simple things like switching over laundry, I don’t get used to not being able to go up stairs without taking a break halfway up. My illnesses have an influence on every single thing that I do now, every single decision I make, it’s something I always have to take into consideration. If this is not something you have to deal with, you’re lucky! Ignorance truly is bliss. Not knowing this feeling for 16 years of my life was great, but now that I do have this in mind all the time, it has become something I see a desperate need for more awareness, because this is not a rare feeling. According to the National Health Council, chronic diseases affect about 133 million Americans. While each and every one of those people has a varying degree of severity to their illnesses, you can bet that a huge portion of those people are going through exactly what I do everyday.
Before I start explaining what I’ve gone through in dealing with difficult people, let me preface with saying that I have great friends, family, teachers, and doctors. None of the people that I surround myself with are “bad” people, and none of them mean harm with their words. It’s not hard to invalidate someone with a chronic illness, I mean, look at us. We look completely healthy, we probably act like we’re fine most of the time so as not to worry anyone or draw attention unnecessarily, so why can’t we *insert some physical activity or activity that requires a lot of standing, etc. here*?! Or, how come we sometimes are able to do *insert thing* and sometimes we’re not? Honestly, these aren’t really unreasonable questions, but for me personally, I felt like I had answered them a million times and was still getting asked by the same people. Sometimes they wouldn’t directly ask them, but I would hear through others later that people were talking about me saying something along those lines. Another thoughtless comment is about how “lucky” I am to have certain things given to me (like my elevator pass, my one day extension on my homework for when I’m feeling bad). These things are given to me to keep me from feeling worse, despite how it looks. It’s easy to make these comments, to judge others based on their looks (my misleading look in this case, is that I look healthy), but I challenge you to think through everything you say. I challenge you to catch yourself and correct yourself when you make comments that could potentially harm someone. With 133 million Americans being affected by chronic diseases, I challenge you to find someone to keep in your mind to keep you conscious of your words and choices.
Thanks for reading!
Staying strong, Spoonie Cutie.