Coping with the Mental and Emotional Challenges of JIA
When I was a child with juvenile rheumatoid arthritis, now called juvenile idiopathic arthritis (JIA), the mental and emotional aspects of adjusting to and living with the disease were very challenging. On the one hand, I was a regular kid. But, on the other hand, I had a serious illness that was causing me pain and increasing disabilities from a young age (about two years old).
Unique JIA challenges as a child
I imagine the mental and emotional challenges of an adult newly diagnosed with rheumatoid arthritis (RA) may be similar. But, there was a lot of complexity in my experience of trying to be a kid, going to school, dealing with pain and joint problems and learning to manage a serious disease while trying to grow up and create a life for myself. It was a lot to juggle!
It’s my hope that people diagnosed as adults generally have coping mechanisms, support, and a somewhat established life (though all of these things may experience seismic shifts with diagnosis) that may help with the adjustment. Not to diminish being diagnosed as an adult, but children don’t have the emotional and psychological development to help them cope.
As a child, I experienced periods of being confused, upset, angry, and generally not feeling like I was coping at all with my life of JIA. However, I was lucky to have a supportive family, good friends, and generally a good head on my shoulders that helped me to gradually adapt.
Adapting to JIA as a family
While JIA was also a challenging mystery to my family, we learned together. In a big way, my whole childhood was about learning about the disease and its impact on me.
Learning how to be flexible
We had to learn to be flexible, to be watchful for disease changes, and to learn to flex with the illness that could not yet be controlled. When I had flares and suddenly couldn’t walk, we had to learn how to manage. To say it was hard is truly an understatement.
Focusing on the good things
Perhaps the most difficult aspect for me was the unrelenting pain. While my family wanted to help, there was nothing that could be done. So, we focused on the good things in life and making lemonade out of lemons.
I couldn’t make the pain go away, but I could learn to do things that made me happy (like reading books, listening to music, watching movies, eating good meals, spending time outside, playing games with my family, and so forth). While the pain was still there, I could still enjoy my life. This is a huge lesson that I carry with me to this day.
Coping with emotions
Another task was to learn to cope with the emotional weight of a challenging disease and that I was (and would always be) different from the other children. There were games I couldn’t play and lots of things that were harder for me to do from a young age. Yet I still had the heart of a kid.
It was emotionally painful to be different. I had to find those kids that could accept my difference and still be true friends. Thankfully I did, but this wasn’t always easy.
It takes time to find grit
Sometimes, I was just sad and upset. Sometimes I was in so much pain, I couldn’t explain. Sometimes I was too tired to get out of bed. It wasn’t always easy for my parents to understand, but I really appreciate that they tried.
Even more importantly, they insisted and expected that I figure out how to cope. They of course supported me to figure out how and arranged for me to get adaptive tools, counseling, therapy, or whatever else I needed.
But the end goal was that I needed to find the mental and emotional fortitude (grit) to live with my JIA and build a fulfilling life.
The journey is ultimately up to us
One of the hardest things for me as a child was feeling that my JIA was unfair and undeserved. I didn’t understand (and still don’t) how such a painful disease could happen to a child. It was perhaps my hardest mental and emotional hurdle to stop this raging and questioning to move past it and accept that it was just how it is.
I decided that the universe is huge and varied, that we cannot yet account for why things are (as Neil DeGrasse Tyson observes: “The universe is under no obligation to make sense to us”), but despite not agreeing I must move on and live my life. What a thing to have to do as a child!
I believe we all have to find our way in coping with RA or JIA. We can ask for and receive support, but the journey is ultimately up to us. The mental and emotional challenges of living with this disease are significant, but they can also give us amazing perspective and strength.
How often you do experience an unexpected boost of energy?