During the summer of 1975 I worked in landscaping. When I wasn’t working on the weekends, I was at the New Jersey shore with my buddies. I don’t recall it but years later my mother told me that I would come home from work very tired and would nap almost daily. Later, after the school year began in September, I developed a rash on my forehead. At first I thought it was an allergy and I switched bath soap. The rash got worse. I noticed that my long blond hair began thinning and falling out. Next came severe joint pain and fatigue. My parents took me to several doctors who couldn’t figure out what was going on and after about a month I was hospitalized. It took two weeks in the hospital before a diagnosis could be made – systemic lupus erythematosus (SLE or lupus). I had no idea what that meant, and it wasn’t explained to me. I was just happy to be home so I could go hang out with my buddies.
I learned later from a neighborhood friend how severe lupus could be. I did not know it at the time, but the diagnosing doctor told my mother, over the phone, that she should be happy if I lived to 30.
Living with Chronic Illness
At age seventeen I became my diagnosis. Everything about me became the disease; where I went, what I did and did not do, was dictated by having lupus. Many of the people in my life, as well-meaning as they were, reinforced the paradigm of living chronically ill, and I bought into it. I was drinking heavily, using drugs and smoking cigarettes. Why not, I reasoned, I’m already sick so it doesn’t matter.