I was 18 months old when I was diagnosed with juvenile arthritis (JA) for short, so I am living with chronic pain, joint swelling, stiffness and everything that comes with having an invisible illness. Because I was so young when I was first diagnosed, I truly have no clue what it feels like to not be in pain or life without doctors. So I always thought that everyone had it and it was normal until I started kindergarten in my small town.
In a small town, everyone knows everyone and everybody knows everything. So when kindergarten came around, most of the kids knew something was wrong” with me. Some kids were nice while others would run around and say “We don't want to be friends with a sick six-year-old”. Yes, they said these words exactly, I can tell you where and when they said them too. Sometimes when we had a substitute teacher and they looked at the notes the teacher had left, they would wonder why and how a six-year-old could have JA and need to play inside at recess. Although there were some bad things with being young there were so many good things too.
I clearly remember when a set of twins invited me to a sleepover. It was such a big deal as most people are scared off by medically complex kids as we come with a list of things we need. When I got there, I soon learned that their big brother also had JA and took some of the same medications, meaning that they knew how to handle my JA if anything were to flare. I also had friends at Church and class who were always so kind to my family when I had flare-ups and surgery. They would check on me and just hang out with me, making me feel “normal”. As I got older, I was able to turn different class projects into a way I could help educate my classmates on an illness they knew I had but didn't know much about! This allowed me to provide insight into the rheumatic disease community coming from a patient.
I love where I live and where I'm from. The small town has supported me over the years with my illness and I’ve been able to teach others about what kids with JA have to go through daily. They have helped shape me into who I am today, and I wouldn't change it.
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