Despite diagnoses of Sjögren’s syndrome and lupus, U.S. midfielder Shannon Boxx continues to chase the ultimate goal of a World Cup title.
There are plenty of reasons Shannon Boxx shouldn’t have been able to win her spot on the U.S. women’s national soccer team this year. Even for the midfielder with 190 appearances to date, 27 goals, three Olympic gold medals and a runner-up finish at the 2011 World Cup, the odds seemed stacked against her at 37 years old and following both the birth of her first child and knee surgery.
Boxx, though, knows how to fight against the odds; she’s been doing that for more than a decade. And so when head coach Jill Ellis announced the roster for the Women’s World Cup on April 14, Boxx’s name was there for fourth straight time.
“She’s been remarkable,” Ellis said when selecting Boxx for the 23-player squad, “from where we were in last October when she came for qualifying to now. Physically she’s been tremendous and she’s turned it around.”
In 2002, Boxx was diagnosed with an autoimmune condition called Sjögren’s syndrome, the same illness that former world No. 1 tennis player Venus Williams suffers from. This incurable disease damages the body’s ability to produce mucus and saliva. Without tears or other fluids, those affected can easily develop infections and vision problems, including corneal ulcers. Sjögren’s can also cause arthritis-like joint pain and physical exhaustion, both of which can be debilitating, especially for those with the day job of a professional athlete.
The illness is just one of more than 50 recognized autoimmune conditions, including diseases as varied as type 1 diabetes mellitus, multiple sclerosis, celiac disease and rheumatoid arthritis. The connection between all of these is that they are caused by the victim’s immune system turning against its own body. The National Institutes of Health estimate that autoimmune conditions affect more than 23 million Americans and perhaps more than 80 percent of those may be women. Autoimmunity also typically develops between the ages of 20 and 40. The consequence of these factors is that autoimmune diseases may not just be the leading cause of disability among women, but they could also be a significant drain on the pool of elite female athletes.
Boxx handled her Sjögren’s the same way most others handle autoimmunity: treating the symptoms and hoping the disease wouldn’t flare up. She used eye drops and drank lots of water to make up for a lack of tears and saliva, and when she was hit by fatigue she tried to rest, perhaps take a day off from training.
She didn’t let Sjögren’s hold her back. She played in her first World Cup in 2003 and won a gold medal with the U.S. team at the Athens 2004 Olympic Games. But then, in 2007, Boxx began to struggle again, and she didn’t know why. Her legs were exhausted, her muscles ached and everyday life just seemed that much harder. Her Sjögren’s diagnosis didn’t seem to explain all of this, and she went from doctor to doctor looking for an answer. One told her that she might lose the ability to walk. “I’m a professional soccer player and I’m being told that in a couple of years this could happen,” Boxx says. “I was scared to death.”
Ahead of the 2007 World Cup she was put on corticosteroids to try to alleviate some of the symptoms. These anti-inflammatory drugs are banned for their performance-enhancing effects in healthy athletes, but Boxx received specific approval from the U.S. Anti-Doping Agency to take them.
Finally she received an answer to her troubling medical questions, though that was far from fully reassuring. Boxx found out she had another autoimmune condition, systemic lupus erythematosus. Lupus is one of the most variable and wide ranging autoimmune conditions—the word systemic means that lupus can affect almost any part of the body. It can produce skin rashes, cause blood clots, inflame the lining of the lungs or heart or cause kidney failure. Still, knowing what was wrong, though, came as some sort of relief. “You’re misdiagnosed so many times, it’s an emotional roller coaster,” Boxx says. “By the time I finally found out I had lupus, not that I was happy that I had it, but I was happy that I had something to fight.”
For the next few years, Boxx tried to keep her diagnosis secret. She told her husband and her family, but telling her teammates and her coaches seemed much harder. Though some days she struggled badly with the pain from the lupus or the side effects from her medication, she would just make up excuses: Oh, you know, I’m just sore.
Professional athletes aren’t supposed to show weakness. “There’s marginal difference between somebody making it and somebody not,” Boxx says. Like many other autoimmune diseases, both lupus and Sjögren’s can flare up unpredictably. “What happens if it comes in an important day, an important race or an important game?” she explains. “There’s always that fear now that it’s out that a coach may say ‘Oh, you know what, we don’t want to deal with a player that has to take a day off today because she has a flare.’”
Though her friends and family have been a huge support, Boxx credits her medication as the main reason she can still compete at the top level. When her prescription ran out last fall and she couldn’t immediately get a refill, “my joint pain was huge. I couldn’t lie down on my right side because my shoulder hurt so bad. I couldn’t open a jar. I couldn’t actually hold on to a fork eating,” she says. “Those little things have nothing to do with being an athlete at that point.”
Slowly Boxx opened up to her teammates. In 2009, she told Christie Rampone, captain of the U.S. national team and her best friend. In 2011, she told Pia Sundhage, then the head coach. She explained everything to the rest of the team later that year.
Then, in April 2012, Boxx reached out to the Lupus Foundation of America. She still worried about the implications for her career, but she felt she could play a more important role off the field as an ambassador for others with the disease. Boxx wants people to understand the severity of her condition, to raise more money and support for research—though autoimmune disease is twice as prevalent as cancer, in total, autoimmune conditions receive just a sixth of the research funding—and to help those affected.
“We look normal,” Boxx says, “I seem normal. I don’t look sick. I have a feeling there are probably a lot of people that are like, ‘Oh, she must be done with it’ or ‘It must not be that bad because she’s able to do what she does.’ I don’t want that stigma to be that that’s what lupus is. I want people to look it up and to realize that it is a life-threatening disease and there are people that can barely walk or are having organ failure.”
An unexpected consequence of going public was that other athletes reached out to Boxx, sports stars who were also diagnosed with autoimmune conditions but who don’t feel they can yet talk publicly about their own diseases. Knowing that there was someone who could empathize with their situations, they sought her out for advice.
Back on the field, Boxx’s main goal is the Women’s World Cup, which starts Saturday. The U.S. takes on Australia in its first game on Monday. “I thought I was done after 2012,” Boxx says, “[but] that itch to want to keep playing was still there.” The decision to select Boxx for Canada “just made sense,” Ellis explained in April.
The midfielder already has a second-place finish from 2011 and two third-place finishes from ’03 and ’07, but she is desperate to add a winner’s medal to that list before she retires. Boxx says this will be her last major tournament. “We have such a great opportunity to win the whole thing,” Boxx says. “It would be a good way to say goodbye to playing this game.”