What I Learned from Being a Child with Juvenile Arthritis
I'm glad I got RA when I was four years old.
Am I the only one who can hear the sound of a needle scratching over a record that is the collective incredulity of everyone who's reading this? Does that sound like I'm a little crazier than normal? Bear with me for a minute and I'll explain why.
I don't remember much of my life before RA (or JA – Juvenile Arthritis). Only a few of those brief images created in a child's mind that become part of your mental slideshow of what happened when you were a kid. After I turned four, they are joined by other flashes, many of them related to swelling of my right wrist and left ankle at first, then all of my joints and a pain I didn't understand. And later, they're joined by many other memories of regular childhood and a most irregular one, as well. Because none of my friends missed as much school as I did or spent months - even years - in hospitals. Still, whether I was home or in the hospital, it was never just all about RA. The rest of my life continued to flow in and around changed circumstances, adapting and shifting to fit.
And that’s the first big lesson I learned from having JA. That life goes on.
Life happens and that's one of the best parts of living. That regardless of what is going on around you the stuff that makes up your life doesn't stop. The cat needs to be fed, your kids want to show you the worm they found in the garden, the weather changes, good books get released. Sometimes it's a small thing like bees gathering pollen, sometimes it's a big one like a presidential election. All of it is life. A life that demands your attention and participation and it is what gives your days meaning. It is what makes it all worthwhile.
And that is the second big lesson I learned from having JA. That pain is not the worst thing that can happen. Not living your life is.
The contrast from before-RA to after is a shock and a loss that needs grieving. But instead of being given the time to quietly grieve and process the change, you are thrown into a maelstrom of doctors’ appointments, medication and information overload. And then there is the pain. Learning to live with varying levels of pain is a challenge that can bring you to your knees. It is overwhelming, all-consuming and it can feel as if you will never get your head above water. Over time, you learn the intricacies of pain management. You learn to balance medication, managing your energy, meditation, physical therapy and all the other things that together can get your pain to a manageable level so you can dive back into your life. You learn that sometimes, low pain is as good as no pain and you move on.
And that is the third big lesson I learned from having JA. To get ahead of the pain.
I spent a lot of time in a rehab hospital inDenmarkwhen I was a child. The months and years I was there weren't fun by any stretch of the imagination, but one thing in particular was useful. Very early every morning, they would wake all of the children with JA to give them a painkiller and we’d go back to sleep for another hour in two. And when we got up, the painkillers were working. We were able to start the day with less morning stiffness and less pain and as we went off school in the hospital basement or to exercise in the physical therapy center, we were able to focus and do more because we had gotten ahead of the pain. All these years later, I still set my alarm clock for two hours before I have to get up and take my painkillers with a cracker or a bite of apple to protect my stomach. When I get up, my warm shower helps even more. By the time I'm dressed, I am able to laugh at the antics of the cat.
And that is the fourth thing I learned from being a child with RA. To find the funny.
Many people who live with chronic illness and chronic pain develop a very dark sense of humor. Along with the love and support from our families and friends, it's what gets us through the tough times. Finding the ridiculous in sitting on yet another examination table dressed only in a paper gown gets you through this kind of vulnerable moment. Laughing at having to ask your child to open the childproof cap on your medication helps you to not get stuck in grief at losing that ability. Making fun of the amount of gas you have as a side effect to your medication is the only way to deal with the lack of dignity. Finding the funny helps you find yourself again.
Over the last four decades, I have had times where my RA simmered in the background, leaving me to focus on the rest of my life. I have also had times where the RA took over my life, placing itself front and center making it very hard to see anything other than the disease. These four lessons that I learned as a child with JA has helped me build a set of coping skills that get me through the good times and are invaluable during the bad. And that is why I am glad I got RA as a child.
Once you know the tricks to coping, you can do anything.
July is Juvenile Arthritis Awareness Month in the US. To learn more about JA, chek out JA Page and The Arthrtis Foundation website. You can also watch videos from the JA Conference held earlier this month in St. Louis.
Lene is the author of the award-winning blog The Seated View.