It was the end of the world. Or, at least it felt that way at the time. I had just found out pictures of my seventh-grade class had been taken the day I was absent to visit my pediatric rheumatologist. All my friends took pictures together, and I felt so left out. I was already missing so much school to attend a variety of specialists for my juvenile arthritis — but this was the icing on the cake.
Juvenile arthritis requires careful monitoring, and it’s not uncommon for kids to visit their rheumatologist every couple of weeks. Add on other specialists your child may see, such as an optometrist, and it can feel like your life is nothing but doctor’s appointments. It can result in a lot of missed school and frustration.
I’ve heard many kids with JA — myself included — complain that they feel their life is nothing but doctors and physical therapy. Frequent trips to doctors and therapists can feel socially stifling, especially when it means missed classes or activities. Being around adults so often can be stifling, too. Even though most kids understand that visits to the hospital are necessary, it’s hard not to feel resentful sometimes.
‘I just want to be a kid’
Kids with juvenile arthritis aren’t mini-adults. They’re kids, and they need time to be a child. They need to spend time with their peers and have time to unwind and have fun together. Sometimes, kids with JA need a break from being a “kid with JA.”
Strike a balance
Parents, make sure your child has time to be a kid. Admittedly, it can be hard to strike a balance when your child is chronically ill — especially during a flare. But try to listen to them and understand how they’re feeling, and work together to find a balance. As a preteen, I was allowed to have sleepovers with cousins and friends the weekend after rheumatology appointments. It helped to take my mind off hospitals, and let me relax and have fun. And while I had to do physical therapy a few days a week after school, we did our best not to arrange appointments during my weekly art club.
So, I didn’t make it into my seventh-grade yearbook. But that didn’t stop my mum and me from doing our best to make sure I had a normal childhood. I went to birthday parties, had sleepovers, and joined afterschool clubs. I will always be thankful for my mum for giving me time to be a kid — especially when it seemed like doctors were taking over my life.
Note: Juvenile Arthritis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Juvenile Arthritis News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to juvenile arthritis.