After having had juvenile idiopathic arthritis (JIA) for 20 years, I had a moment in my journey when I realized something new: “Your arthritis doesn’t just affect you, you know,” my sister said. This statement stopped me in my achy tracks.
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Explore This IssueOctober 2017
For two decades, I had been operating under the assumption that JIA was my problem, my disease—that I was the only one who had to deal with the aches, pains and limitations. Yet I was one of six people in my family growing up, and when she said this to me, my perspective burst open to the reality of the impact of arthritis on everyone around me.
She was right. I was the one diagnosed with JIA when I was 6 years old, but she was a 3-year-old who inevitably also had to deal with her sister’s disease, as did my 30-year-old parents who had three young daughters at the time, and another on the way.
Nobody in our family knew anything about juvenile rheumatoid arthritis (JRA), as the disease was called most of my life. In the words of my father, “Everything I [had] heard about JRA [in 1965] was extremely negative, the future grim.”
Times have changed. Thankfully, I am not confined to the wheelchair my parents had prepared me to expect (They believed that; I did not). I live a full and productive life—after six successful joint replacement surgeries, multiple courses of ineffective and effective medications, access to excellent medical care and my personal ongoing efforts to stay strong, mobile and healthy. My family and I are now more than 50 years’ familiar with this disease, and so as I prepared this article, I thought I would ask my parents and sisters to share their perspectives with me about what it was like for them growing up with JIA, because that’s what happened: We grew up with it together.
Growing up with JIA
We lived just a few miles south of Boston, which is a city not short on rheumatologists. I was diagnosed after five weeks in the hospital, and I have been under the care of expert medical teams ever since. In the beginning, it was confusing. People were familiar with arthritis as something that happened to old people for no reason other than the unavoidable consequence of getting older or overusing their body. How could a 6-year-old have arthritis?