My Pain Will Never Go Away, but That's OK – Because Being Sick Is All I've Ever Known
I was diagnosed with juvenile arthritis when I was 18 months old. My parents noticed I was walking funny and after the blood tests came back, I was officially diagnosed with juvenile rheumatoid arthritis which is now known as juvenile idiopathic arthritis. Now 25, I’m just trying to live in a healthy person’s world.
Growing up sick is something I would never wish on any child. As we all have experienced, kids are mean. Add a disability to the mix and it’s like throwing gasoline in a fire. My arthritis affects all my joints and when I was younger my main problems were my knees and hands. So with that, I was blessed with the name “chair girl” since the whole class would sit criss-cross on the floor around our teacher but I was unable to do that due to the pain and swelling of my knees. So they decided to give me a chair. I couldn’t write more than a few sentences without my fingers being in terrible, achy pain so I was given a little machine to type on. This was super fancy for the ’90s! The positive for the typewriter was I became way better with computers than my fellow second- through sixth-graders.
I’d have appointments with my rheumatologist at Cincinnati Children’s every month to three months depending on how my JIA was doing and everyone would always say, “You’re so lucky you get a free day out of school.” This comment has made an appearance at every point in my life. You wish people would understand that spending eight hours at a hospital isn’t a “free day.” I would have much rather been at school or, as I’ve gotten older, work. For many years I’d have to go to my pediatrician’s office to get my methotrexate shot. That stuff is the devil. There is nothing enjoyable about having to hold your nose because the smell of the doctor’s office would make you throw up. Every. Single. Time.
Somehow I have gotten Children’s to still see me and that is where I get my infusions every four weeks. God bless that place, it’s like a second home to me. I truly don’t know where I’d be without all my rheumatologists and nurses. Growing up in a hospital really isn’t a terrible thing. You definitely get used to blood and needles real quick!
As I’ve gotten older, when I tell people who don’t know about my illness the most common reaction is sympathy. It’s the “oh gosh, well are you feeling better?” No. I’m not, but that’s OK. This pain that sends waves through my body will never go away and again, that’s OK because it’s all I’ve ever known.
You always have hope that maybe one day it will get better and hey, maybe it will. But it’s OK to accept it might not.
Sometimes it’s OK to not be optimistic. Sometimes it’s OK to lie in bed when your husband is asleep and cry because you’re scared for the future.
Sometimes it’s OK to cry because when you lie down to go to sleep pain you have been able to ignore all day just overwhelms you.
Sometimes it’s OK to say you’re not OK and tell someone no, you can’t help.
You will make it to tomorrow because you are a warrior.
I feel for the people who get diagnosed with an illness later in their life. They are the ones who have had to change their lives for this disease. This life is all I’ve ever known. I am the face of juvenile arthritis, and that’s OK.
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Thinkstock photo via heckmannoleg.