JRA vs. RA: Caught in the Lonely Gap
In early March I took photos at a 5k walk for my local Arthritis Foundation chapter (the Upper Midwest Region), The Walk to Cure Juvenile Arthritis (in the past it was called the Juvenile Arthritis March), which is a really fun event held each year at the Mall of America in Bloomington, MN. This was my fourth or fifth year volunteering and photographing the event. Every year I’m always impressed to see so many people coming together to support arthritis advocacy and to support the kids and their families whose lives are touched by arthritis on a daily basis.
Roaming around the Mall of America behind the lens of my camera, I was happy to notice the positive, high-spirited energy of the people around me. I watched kids with arthritis hanging out and having fun with other kids who have arthritis. I saw parents chatting excitedly with other parents, maybe as old friends brought together by the disease their children have in common, or as new friends, meeting and bonding for the first time at the walk. Grandparents, aunts, uncles, cousins, and friends marched together decked out in “crazy” colorful costumes while waving signs and posters with their loved one’s name or face proudly displayed. I’m always glad to be a part of this, not only because it’s fun and an important cause, but because I know what it’s like to be a young person living with the debilitating and deforming pain of RA. It’s a comfort to be among my own “arthritis tribe” and people who actually understand what it’s like to have this disease, especially as a young person. But despite the feelings of happiness, belonging, enthusiasm, and gratitude I felt, other strong emotions kept washing over me. Emotions I’d rather not have.
Wading slowly through the crowd, I snapped photos of giggling teenage girls sporting glittery hair and matching T-shirts, taking selfies on their smart phones with their arms linked together. And little kids with giant smiles lighting up their faces, playing and dancing together. Pangs of sadness and loss struck me, as I thought back to my own teenage years after being diagnosed with RA at age 18. My symptoms actually first began the summer of my junior year of high school when I was 17, growing progressively worse throughout 12th grade. During those months, and then during the many years that followed, all through my college years, I didn’t have any teenage or college-age RA friends to connect with and talk to about living with this scary, devastating thing taking over my body. I faced the disease and my new life essentially alone. I did have my family and my doctor, but they couldn’t really understand. Nobody could.
After months of increased swollen fingers that couldn’t bend and mornings where I could barely stand to put weight on my feet, I finally went to see my pediatrician near the end of 12th grade. She gave me a preliminary diagnosis of RA and immediately sent me to see an adult rheumatologist. Blood tests came back positive, my fingers were swollen, painful sausages, and I could barely walk. The RA diagnosis was given quickly and then so began my life as an adult RA patient. I was 18, I didn’t know anybody with RA except my grandma (who was in her 70s), and I felt like an 80-year-old.
Being young while living (and fighting) with this greatly misunderstood “old person’s condition,” this invisible disease, can cause feelings of deep, impenetrable isolation and loneliness. I coped the best I could, despite having few resources regarding a support system. My mom tried to help; shortly after I was diagnosed she joined our local Arthritis Foundation and had some pamphlets mailed out to us. She also signed up for Arthritis Today magazine, hoping I could find something useful and comforting in there. Oh, what a treat in my mailbox–articles about orthopedic footwear and what to expect from surgery! Drugs with long, strange names listed and their possible side effects, which might be worse than having the disease in the first place. And ads displaying the latest deals for pill box organizers and wrist braces tucked in among the articles I had no desire to read. Compression socks. Weird contraptions to clip onto your car keys. Shower chairs. Glancing at any of this, even briefly, made my heart sink.
I do remember contacting my Arthritis Foundation chapter myself asking about support groups and if there was anything available. There was, but it was a general support group for all ages. There was nothing for young people with arthritis. Depressed, anxious, lonely, and scared–I went to one group meeting. When I arrived, I immediately noticed I was the youngest person there by about 40-50 years, and possibly the only person who didn’t have gray or white hair. Quietly, I sat by myself and took notes, and felt tears well up in my eyes as I looked around the room at the crippled senior citizens in front of me, with their twisted, knotty, ugly fingers, and swollen knuckles, very similar to my grandma’s hands. Is this what I had to look forward to? I left that group and never went back. My family and I were basically left to our own devices, clueless about what to do with a teenager with debilitating arthritis that was destroying her body and breaking her heart.
Thankfully, the more I became involved with the Arthritis Foundation over the years, I eventually began to meet and connect with other young(er) people who also had RA. But it wasn’t easy and by the time I started to make those connections, my teenage and college days were over. The majority of my most impressionable years were spent feeling very alone and misunderstood. I often wonder if things might have been different, if my social life would have been different, if I had gotten RA earlier in life? If I had been a bit younger, would I have been notified about kids’ summer arthritis camps or put in touch with other kids who also had RA? How different would my life be if I had been diagnosed when there were more arthritis communities and health resources available on the Internet? When I was first diagnosed, the Internet was still a pretty new thing (yes, I’m old) and the idea of connecting with other RA young people online didn’t even cross my mind until years later. Internet access also wasn’t as convenient or available back then. I didn’t have a computer at home until my senior year of college.
Today I’m incredibly grateful for the RA friends and connections I have been lucky to make, no matter the timeline or how old I was when I made them. The support, kindness, understanding, empathy, and humor of these friends are invaluable to me. But I admit that I sometimes stop and wish that I hadn’t fallen into the “RA gap,” teetering on that line between being a child or adult patient. I wish I hadn’t missed out on having friends who understood what I was going through during that time, who could’ve been there to share the laughs and tears and to link arms with me–just not too tightly, of course.