Living with juvenile arthritis (JA) or other pediatric rheumatic disease can feel incredibly lonely. After the dust of the diagnosis settles, and the original tests are done and the treatment plan established, that is the time when you may finally look around and feel terribly alone. Or perhaps, like me, the shock of the diagnosis took a very long time to absorb, and it is much later that this feeling of isolation hits you.
You have a child with juvenile arthritis or rheumatic disease, and you probably spend much of your breath explaining to everybody that kids get arthritis, too. You probably have explained it to family, to colleagues, sports coaches, teachers, people at church and community groups – and even to strangers who question why your child is limping or in a stroller or wheelchair. You have seen the glances at your child, who may look totally healthy, and you sense the skepticism as people watch your smiling child laugh and play. Later that evening, though, those same people are not there to see the warm bath that is necessary because of the pain. They are not there to know that sometimes you have to carry your child, or sometimes you choose to stay home from birthday parties just to avoid the bounce house. It’s not like you invite them over on shot night or to count out pills. They have heard your words, but they might not truly understand your reality. Your child may also feel alone, without a friend who “gets it.”
When you have never had the chance to speak with somebody else travelling the same road, and you are dealing with a frightening new diagnosis and your child is in pain, dark doesn’t even begin to describe what that is like. Add lonely, overwhelming, demoralizing, intimidating, harrowing, and you start to come closer.
I get it, though. Even years after my daughter Caitlin was diagnosed, I often felt as though even my closest friends did not know what happened when the stoic act and brave face put on for the public was dropped in the safety of our home. I remember explaining to a stranger through clenched teeth about juvenile arthritis and the side effects of prednisone when he suggested that my sweet little puffy faced witch, being pulled in a wagon on Halloween, didn’t “need” any candy. I literally chased down a young woman at Disneyland when I heard her make a snide comment about Caitlin riding in a stroller – age 6 at the time. “Don’t be so judgmental … she has arthritis! You can’t always see on the surface what is going on!” I hissed to the shocked girl. It often felt as if my family was fighting a battle against the ignorance of the world, and against a very scary disease – completely alone.
When I finally felt the relief of talking to another family who lived the same things, it was game changing. All of a sudden, we felt part of a larger group, a larger mission. We knew that there were other parents, other kids – other families just like us.
I get it. So do the other families living with juvenile arthritis. This understanding is the foundation for one of the blessings that can come from this journey.
There are nearly 300,000 families in the Unites States who on some level understand this very intimate and complex part of your lives. We understand it in a way that often cannot be explained to somebody who has not worn these shoes or walked this road. This shared journey connects us in a way that can often supersede other facts that may divide us – politics, location, personal and religious beliefs. Those things seem secondary to the fact that we have this common reality and common goal of finding the cause of these diseases – and finding the cure. Along the way, we can share strength, share ideas, share support and in general help each other through this experience.