Finding the Silver Linings
When I was diagnosed with rheumatoid arthritis, I felt like my life was over. It was the summer of 2000, and I was a 22-year-old college student one semester shy of my degree and just returning from studying abroad at Oxford. The new millennium should have looked bright. Unfortunately, I was in the midst of a flare that sent me in a tailspin, and I had no clue what was happening to me. I was incredibly swollen, fatigued, and in pain, and nothing was going the way I’d planned.
For a couple of weeks each summer I was a volunteer counselor for camps for children with special needs, and that summer I was supposed to volunteer for a wonderful camp for children with hemophilia and other bleeding disorders. I had been looking forward to it since waving goodbye to the children as they boarded their buses to return home the summer before. However, I was in so much pain that I had to skip camp that year. I attempted my final semester of college, but I was unable to keep up with notetaking and writing papers. When I finally got my diagnosis shortly before midterms, I took a hardship appeal and withdrew from all of my classes.
RA was derailing all of my plans even before I had a name for the condition that was causing me so much pain, swelling and fatigue. On top of that, I learned that RA is a degenerative disease without a cure that requires lifelong management. This was not at all how I had envisioned my future, and, as one might imagine, I was depressed for several months.
A major turning point occurred for me the following spring. I was self-administering Enbrel injections, and this biologic medication reduced my symptoms to the point where I was able to take the remaining college courses I needed to graduate. I would also return to the camp for children with hemophilia and bleeding disorders. One day on my way to class, I was thinking about those campers. Hemophilia is a disease that can be treated with prophylactic clotting factor, administered intravenously. I had witnessed children as young as seven years old inserting needles into their veins, and had felt wonder and humility in seeing just how strong small children can be. As I thought about these campers, it occurred to me that now that I was self-injecting medication, we had something in common. Sure, those campers were far younger than me and were finding a vein, a far more delicate procedure than a subcutaneous injection, but still, it provided some common ground. In realizing that my RA might help me better understand and connect with the children I volunteered to serve, my perspective shifted. Of course I’d heard the phrase, “What doesn’t kill us makes us stronger.” In that moment, the truth of that statement shined down on me. In recognizing that there were ways that my RA might cultivate my abilities, I emerged from my depression and began feeling hope and excitement about my future again.
Over the past two weeks, I’ve been reminded of this duality of RA: that in some ways it weakens us, but in other ways it strengthens us. I was at home with my kids, the youngest of whom was misbehaving. When I picked up my two-year old for a time out, a huge surge of pain went through my back (I imagine there was a collective cheer from disobedient children around the world). I spent the next 10 days going to the chiropractor, consulting with my rheumatologist, icing and stretching my back, taking painkillers, and wearing a back brace. I tried to compensate for my painful back by squatting whenever I needed to pick something up or put something down. However, it wasn’t long before my hips started screaming at that extra strain. I felt dejected at my decreased productivity, and in order to get anything accomplished I decided that I needed to put my kids to work.
It turns out that a two-and-a-half year old can drag a hamper to the laundry room, throw the clothes into the washing machine, and place a basket full of wet clothes into the dryer. An older toddler can also peel carrots, as well as clear his dishes from the table, take them to the sink, and rinse them. A four-year old can load dishes handed to her into the dishwasher, put folded laundry into the correct dresser drawers, and make a bed. I have always been proud of my children and have intended to teach them to be as independent as possible. However, I have been astonished these past two weeks to realize how much more capable my children are than I had ever realized.
Now my back and hips are back in alignment, and they are not causing me much pain. However, I continue to have my children perform these new chores. Not only is it a help to me, they truly enjoy these activities. They are honing new skills and developing true self-esteem, which comes from personal accomplishments and not from being told “good job” a hundred times a day. To add to my astonishment, they are far more cooperative with my instructions and far less prone to sibling squabbles than they were just two weeks ago. While I wouldn’t want to relive the pain of this time, I am actually grateful that it happened, as this experience has had a profound impact on my parenting.
Rheumatoid arthritis is a bear of a disease, and if there were a cure I would take it in a heartbeat. I wouldn’t wish this condition on anyone, and I hold out hope that one day we will all be free of it. That being said, until there is a cure I find solace in reflecting in the ways that contending with RA has changed my perspective and has, in fact, made me stronger.
When was your last flare?