Confusion of Chronic Illness

What does it mean to be chronically ill?

Those who are healthy think of being sick as something like this-
- you "catch" something
- you feel lousy
- you take medicine
- you get better.

Chronic illness is very different. You don't exactly "catch" something, it just sort of happens. You feel lousy, beyond lousy. You go from doctor to doctor to doctor trying to figure out what is wrong with you and why you aren't getting better. You take medicine, and more medicine, and vitamins, and supplements, and treatments, you stop medicine, you get surgery. You add another diagnosis. You repeat this cycle. Over and over. You never fully get better.

There is a lot of confusion with this. It's hard for those of you who are healthy to relate when it is something you have not experienced. But even if you can't relate, we need you to understand.

We don't want to be sick. We did not choose this. We can not reverse it. You cannot see it, but we can feel it, all the time. Some days are worse, some days are better, but never "better" like how you understand that word.

For example, Tuesday night I had an extremely rough night. You might have seen me and thought I should be in the hospital. Wednesday I rested, all day, literally. Thursday I had energy and was go go go all day getting things done around the house. I over did it. By the end of the day my eyelids were droopy, my vision was unfocused, my voice felt strained to talk, my arms/shoulders/chest was struggling to be typing on the computer. Today I'm in between, mainly my throat is affected with weak swallowing and talking. I'm wearing my neck brace. My vision is still unfocused. I have to take it easy with my upper body. I had stiffness and pain in my joints. I did a little and rested a lot. I have no idea what tomorrow will bring. Perhaps I'll get a surge of energy and get out to a few stores. Or perhaps I'll barely be able to sit up in bed and need my mom to be more of a caregiver than a mom all day.

We don't know what it will be day to day or even hour to hour. We take advantage of the time we have feeling half decent because we don't know when it will end. So yes, you may see us out and about, wanting to meet for lunch, making phone calls, doing housework, traveling, etc. But at any given moment that changes and we can decline slowly or rapidly. That is when we have no choice but to cancel plans even if we really wanted to be there, when we can't talk on the phone because our voice is too weak, when we look depressed because we literally don't have the strength or energy to expel, when we wish there was someone there to help us but sometimes we don't want to ask and people think we are perfectly fine.

Chronic illness doesn't end, it only changes, sometimes better, sometimes worse, always unknown.

So let's just show one another some support, some grace, some encouragement and some love- healthy or chronically ill. God bless.