Over the course of the past week, three people in my life have very openly asked me similar questions about what it's like to live with a chronic illness. After shortened explanations of the Spoon Theory, attempting to stay as lighthearted as possible, and the citation(s) of countless Web MD definitions... I've found even myself a bit bewildered by the pain that has forever changed the way I live my life.
Autoimmune arthritis is still confusing to me and I was diagnosed nearly 5 years ago. I don't know why I was one who inherited the HLA-DR4 gene or why I was 1 in 250 who was diagnosed with juvenile arthritis at a young age. I don't know why my immune system attacks itself and causes pain and swelling or why I can go from feeling great to experiencing writhing pain in a matter of seconds. There are so many unanswered questions that I've simply stopped asking "why?" to.
In a nutshell, here's why: even when I'm in pain, I'm Kenzie. No amount of pain, no doctor's appointment, and no medication will change the fact that I am alive and human with a life to live and the choice on how to live it. I'm a teenage girl who wants to stay out with her friends til the wee hours of the morning. I want to be able to go on a date and not worry about having to explain the pain relieving patches or joint braces covering my body. I want to live, learn, and experience just like we all do. I just go about doing so a little differently.
For those reasons and others, I've found that even when I'm in pain, I somehow find the strength to go for a run. To go shopping with my girls. I finally say "yes" to that date I was avoiding. I stay out late with my friends. I put my swimsuit on and go out to the lake. I take on another babysitting job for the week... Because I've simply realized that if I'm not living my life, no one will.
In reality, the pain? It doesn't go away. My pain levels change more rapidly than anything else in my life does. One day may be a tough one, and the next might be excellent... An OMG-this-is-what-normal-feels-like kinda day. But ultimately and realistically, my diagnosis is chronic, and that means it never goes away. It doesn't go away, so I just make room for it. I create a new normal the best way I know how, and when I discover something better, I do better.
The truth is, I don't know how to explain what it's like to live with a chronic condition. There aren't words to describe something that changes you on an hourly basis. All I know for certain is that day in and day out, this is my reality and doing what I can to create a sense of "normal" in the midst of it all is essential.
I take it all one day at a time not only because it's the best way, but because it's the only way.