Chronic illness is effectively always being sick. I'm sure there are cleverer definitions, but that's what it is to me. And since I'm writing this blog, I get to decide how to interpret my own answers. So there. I've been ill for about 10 years now. It wasn't so bad at first, but it has gotten worse, and now it is Noticeable.
Obviously I can't speak for everyone, but for me, my illness went like this:
1. I'm not feeling so good sometimes
2. I'm feeling downright crummy sometimes
3. I'm feeling terrible more times than not
4. I'm feeling terrible a lot of the time.
5. I rarely feel good.
Today happens to be a good day. I'm in pain, sure, but I'm not depressed and I'm able to function mostly like a healthy human being. I can get out of bed, I can eat food. I can listen to sounds. I can workout at the gym. I can play with the children. I can do work. I can socialize.
Yesterday happened to be a bad day. I barely got out of bed. I lied to everyone who asked me how I was doing. I finished my day by crawling from the couch to the bed and spending 9 hours tossing and turning while I tried not to cry or throw up. I admit that yesterday was the first time that I was in so much pain that I reacted by puking. I'd kind of like that to not happen again, but I don't know that I can do much about it.
What's it like having a chronic illness?
Again, not to speak for everyone, but in my experience, dealing with the pain isn't actually the hardest part of having a chronic illness. Human bodies and brains are amazingly resilient. You stub your toe, and your nervous system goes YIKES! but then your brain says, no, it's okay, we can still walk. On with the football game! I'm in pain like 98% of the time, but I honestly sometimes sort of forget that I'm in pain because my psyche is like, dude, we have other things to think about. Like, I go to yoga class, and the instructor asks us to do a down dog, and I have to stop and think about it, hmm, are my wrists feeling good enough to support half my body weight right now? Nope. Rarely. But the pain isn't constantly pressing me down. It could certainly be worse, and I know that some people do deal with constant noticeable pain, but it remains incredible how much pain human beings are capable of dealing with once we realize we can't do anything about it.
No, the hard parts of chronic illness are things like waking up in the morning and counting your spoons (aka, emotional energy), and realizing you'll never be able to get everything done because you just don't have it in you today. Things like meeting someone new and trying really hard to find things to say that don't have anything to do with illness, even though it's a huge part of what you think about most of the time, but you don't want them to immediately think of you as a sick person. It's things like being afraid to make appointments because you don't know if you'll be feeling up to it that day and you hate feeling like a flake. It's things like people asking how you are, and secretly knowing that you'll never be able to honestly say "good," but you kind of have to because there's no point in getting into the whole story in passing. It's knowing that you might never get better, no matter how many good wishes are sent your way. It's when people eventually stop sending flowers and cards because "get well soon" doesn't stand up against the permanence of the illness. It's the loneliness. It's the depression. It's the helplessness.
What can you do to help?
Well, you can care.
