At the time of my diagnosis, in 1996, I was working as a contractor for the National Center for Health Statistics. So I went to the library and I grabbed all the books I could on the topic. I learned that lupus is an autoimmune disease that can affect the joints, skin, kidneys, blood cells, brain, heart, and lungs. Some common symptoms include joint pain, rash, and fatigue—but it tends to impact everyone differently. After pouring through the information, my first thought was: This is a chronic illness, there’s no cure. I didn’t know anyone who had lupus, so it all felt very overwhelming and scary.
Instead of letting it consume me, I started to focus on what I could do to manage my symptoms, and keep living my life. I got married shortly after, and then a few months later, I found out I was pregnant. There were concerns about my pregnancy being “high risk” given the lupus—at that time, there wasn’t a lot of research about the way lupus medication could impact the fetus, so they asked me to stop all treatment. Luckily, during my pregnancy, I felt fine, without any major symptoms. However, about three months after giving birth to my son, I had the worst flare of my life. I woke up one morning and my joints were hurting so badly, I couldn’t even lift my own baby. I was hospitalized, and the doctor adjusted my medication to help.
Despite lupus having such a big impact on my life, I didn’t really want anyone to know I was sick. I shared my diagnosis with my close friends, but I kept it very quiet at work or in certain circles. I think I worried that people would look at me differently, or that it might impact my job in some way.
Still, I wanted to find community and support from people who could understand what I was experiencing. I eventually connected with the Lupus Research Alliance, and found out they were planning a walk-a-thon to raise money for research. I immediately signed up! That was nearly 20 years ago, and I’ve been very involved with the Walk with Us to Cure Lupus program ever since—fundraising, raising awareness, and bringing more people on board.