Shannon Boxx was one of the world’s all-time great defensive midfielders and a former member of the United States women’s national soccer team. After she retired in 2015, she took on another rival, this time off the soccer field. Boxx was diagnosed with lupus in 2007 at the age of 30 during the height of her career playing for the U.S. National Team. Five years later, she went public with her lupus diagnosis.
First, what is Lupus? “Lupus is a chronic autoimmune disease in which a person’s immune system mistakenly attacks healthy tissues, cells and organs (www.lupusresearch.org).” Lupus can damage any part of the body, including skin, joints, and/or organs inside the body (Lupus Foundation of America, LFA, www.lupus.org) and there is no known cure. According to the Lupus Foundation of America, the disease impacts 1.5 million people.
Depending on the severity of the disease, it can cause varying amounts of damage to joints, skin, kidneys, blood, the heart and the lungs. For Boxx, she was playing through throbbing pain in her joints and extreme fatigue. There was more, she was also diagnosed with Sjogren’s Syndrome, an autoimmune in which your body attacks your moisture-producing glands.
“I remember barely being able to walk up a set of stairs to my apartment and believed that this was very different for me, so I went to see a bunch of doctors and it took me six years for them to get me the right diagnoses,” she recalled. “I remember being open and honest with my doctor because that was a huge part of how they were able to diagnose me.”
She could have given up after the first or second year.
“But I had to be a self-advocate early on. I kept pushing them and I really wanted to understand my body and fight for [the] answers. At that time, I was playing at an elite level. I had bad days and that’s the thing about lupus, its unpredictable.”
We asked Tania González-Rivera, an Immuno-Inflammation Medical Director with GSK pharmaceuticals, why the disease is troublesome to diagnose.
“It’s a complicated disease and it is chronic. Symptoms sometimes are not very specific. There are no blood tests, so there has to be a high degree of suspicion. It is good for patients to be advocates for themselves and bring all that information to their physicians so we are able to make diagnoses.”
Once Boxx became public with lupus after so many years, the healing process started because she had the support around her. That helped her continue to play under sometimes intense pain.
This also prompted her to become more active with the Lupus Foundation of America and to support causes and projects that further the mission of finding a cure. She also wants people to stop suffering in silence.
Boxx is more than her diagnoses. She has two children and they keep her busier than she ever was am an athlete.
“They made me even more aware of how I need to take care of myself. Again, I have stayed open and honest with my doctor and have come up with plans that have really helped me manage my symptoms. I have the same motto that I had as a player. If I have a bad day, I am going to get up and try again.”