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.
Even though pediatric rheumatic disease is more common than Type 1 juvenile diabetes, it can still be daunting to find connections to other JA families. I eventually sought out other parents online, in parent forums. We also reached out to other parents through our rheumatology office and physical therapy clinics, and took advantage of any picnic or gathering that offered a chance for us to meet other families. We also told our story so often that people started getting referred to us. Eventually, somebody you know will hear of somebody, or meet somebody, who will be connected to JA somehow, and they will be calling you, asking if you can throw out that lifeline – that connection to another family that can be such a life preserver in the rough waters of this journey.
My family just returned from the annual national Juvenile Arthritis Conference in Keystone, Colo. This was the 30th anniversary of the first conference. In 1984, a group of fewer than 200 gathered together to learn, to connect, to support each other and to have some fun, too. This year, there were more than 1,000 with those same goals!
Over and over again, I heard parents, particularly newly diagnosed parents talk about the relief at finally having the opportunity to simply talk to other people who understand. Of course, for the kids, it is a phenomenal opportunity to be with other kids who get it, without explanation or adjustment. Siblings are at the conference as well, and all kids are in activities together, which is how we live with arthritis in our daily lives, right? It is a family affair that touches everybody under your roof. We always leave the conference with new information and education; but above all, it is the hope, inspiration, and strength that come from connecting to so many people who understand something about your lives that is very difficult to put into words. I am not alone. You are not alone. Knowing that can bring great comfort and provide beacons of hope as we try to find our new normal.
That gift of connection is not limited to an annual in-person meeting. I find this connection all the time in my very large JA family. It is a gift that children experience every time they attend an Arthritis Foundation Juvenile Arthritis Camps or Arthritis Foundation community family days. It’s a treasure to be found in online support groups, arthritis family camps or educational sessions. It’s one of the celebrations of attending a Walk to Cure Arthritis or Jingle Bell Run/Walk that, not only can you feel like you are making a difference, but you connect with so many others who understand your realities. [Learn more from your local juvenile arthritis contact.]
This month marks 13 years since my little girl was diagnosed with systemic juvenile arthritis. I could tell you about medications, about 504 plans for school, about the challenges of playing a competitive sport. I could tell you the ups and the downs and the incredible roller coaster that this disease has been. We could probably share endless ideas about the logistics of medical bills and dealing with anxiety and depression. And you would understand me. But really what I want to tell you is this: You are not alone. I am not alone. And connecting with each other is some of the best treatment there is.