Contributed by: Ashlee
Reviewed by: Evelyn Corsini, MSW, November, 2011
Ashlee describes herself as “a mid-twenties upstate New Yorker that has had Juvenile Rheumatoid Arthritis for the better part of 15 years. I dealt with it throughout high school, college and now trying to live a professional adult life while battling the obstacles that are thrown my way! (and winning).”
Once a week, it takes a few excruciating minutes out of my day to prick myself in the stomach with a needle. The medication burns as it enters the injection site. It takes about three minutes to get the full shot injected. The weekly vaccine is just another regimen in my life to regulate my juvenile rheumatoid arthritis, which causes the body’s immune system to attack healthy joints and cause swelling, pain and degeneration.
I was diagnosed at 17 and had a titanium shoulder replacement at 19 followed by the same procedure to a wrist 18 months later. Back then I was afraid of being compared to my friends’ grandparents, who had the form of arthritis they were all familiar with, osteoarthritis. I was almost embarrassed. It’s not the same thing, and I didn’t want people saying, “Oh, my hip hurts, do you think I have arthritis?” I chose to keep my illness to myself.
I suspect it began at age 12, when I had trouble moving my neck, which was misdiagnosed as whiplash. Throughout my teen years, my toes were often sore and my fingers would swell. At my age, it wasn’t like, “What was the medical problem?” It was like, “What’d you do to mess up your finger?” At 17, both of my knees swelled to the point I needed surgery, but instead of finding tears in my joints, my surgeon found fluid with an elevated rheumatoid factor, a red flag indicator for juvenile rheumatoid arthritis.
My mother, a registered nurse, sprang into action and found the Arthritis Foundation, through which my family was active in my hometown. I remained shy about the disease until I needed a wrist replacement and decided the scars would be too big and obvious to hide, so I turned to activism instead. When I finished college and moved to a new town, I found the local chapter of the Arthritis Foundation and continued to volunteer. Through the foundation, I have attended a national rheumatoid arthritis conference in Washington, D.C., and contributed to a focus group about resources for young people with arthritis in New York City. I continuously fundraise and participate in Arthritis Foundation events. I have this problem, and I just want to make lemonade out of lemons.I’m not going to sit around and say, ‘Poor me; I have arthritis.’