Shannon Boxx faces tough fight
For years, U.S. women's national team midfielder Shannon Boxx kept a very big secret from teammates, coaches and fans.
The three-time Olympic gold medalist, currently with the Chicago Red Stars, has lupus, a chronic inflammatory disease that occurs when the body's immune system attacks its own tissues and organs. The most common symptoms of the disease are extreme fatigue and joint pain, but it can also affect the kidneys, blood cells, heart, brain, lungs and skin.
Boxx feels fortunate that so far lupus has affected only her joints, skin and energy levels, but that could change down the line.
"Some people, it affects their organs," she explained. "Some people actually pass because of lupus. Some have it to the extreme that they can't work or they have to go home early because they're tired. 'We're all tired,' people say, but there's a different level of fatigue that lupus makes you feel."
Dr. Robert Katz, a professor of medicine at Rush University in Chicago and a board member of the Illinois chapter of the Lupus Foundation of America, says that the unpredictability of lupus can make it a difficult disease for pro athletes to battle.
"Any systemic illness can cause a lot of fatigue," he said. "You want to keep up with your competition and your teammates, so that can be a big factor -- lack of stamina. If there's any major organ involvement, that obviously can affect people in multiple ways. Sometimes in order to keep symptoms from getting worse treatment can involve steroids like prednisone, and those medicines have some side effects."
"I have no idea what the future holds," Boxx said. "I don't know what eventually might happen to me. The biggest fear is the internal part -- I'm on medicine to help control that. I have fears that a bad day is gonna come when I least expect it or really can't have it happen."
Just last year, Boxx decided to break her silence and go public with her diagnosis, hoping to bring awareness to the disease, get Congress to pay more attention to it and push toward finding a cure.
"One thing I'll say about coming out publicly talking about lupus, I found a community that I feel very comfortable around," Boxx said. "They understand what I go through on a daily basis."
Back in 2002, doctors diagnosed Boxx with Sjogren's syndrome, an autoimmune disease that shares symptoms with lupus. Venus Williams famously announced her own battle with Sjogren's at the 2011 U.S. Open before taking seven months off from competitive tennis.
At the time of her diagnosis, Boxx felt at the top of her game, despite having to battle though bouts of extreme fatigue. She told her professional league coach about the Sjogren's diagnosis, assuring him that she'd have to fight through some bad days, but would be fine. Three games later, he took her out of the lineup, and she didn't play the rest of the season.
"It could have had nothing to do with the fact that I told him," said Boxx. "But in my head I [equated] it with that, so from that moment on I kept quiet about it because I wanted to keep playing soccer."
Dealing with the disease by herself proved difficult.
"It's hard to know you can't talk to somebody about it," she admitted. "I had my family, but they didn't really understand what I went through every day in soccer."
It got even tougher in 2007 when symptoms beyond the fatigue began to appear. Boxx's blood tests were so abnormal that doctors were nervous about her playing soccer at such a high level.
"I thought my career might need to be done to protect my body," she said. "They were coming at me with different diagnoses and some of these were very scary. Not that lupus isn't scary, but at one point they thought I might not be able to walk very well on my own in just a few years."
When she was 30, doctors diagnosed Boxx with lupus.
"When they finally gave me the diagnosis, it wasn't like I was relieved," Boxx said. "But I was like, 'Well, at least now I know what I'm fighting.'"
Because lupus symptoms mimic those of many other illnesses and because autoimmune diseases often accompany each other, it's common for a diagnosis to take several years.
"Talking to so many people in the Lupus Foundation, on average it takes seven years to figure out what you have," Boxx said. "It's crazy! You have to go off your history, blood tests, how you're feeling, what you visually see. It's not that you take one blood test and it tells you that you have lupus. How stressful is that for somebody to be going to multiple doctors to figure out what they have, and to feel terrible the whole time?"
Difficult to diagnose, mostly hidden from view, unpredictable and without a cure, lupus has been dubbed "the cruel mystery."
"We look normal from the outside," Boxx said of lupus sufferers. "We don't look sick. That's the hard part for a lot of patients is that they're struggling with this disease and they can't really talk about it because people don't understand it."
"That's how I felt for a long time," she continued. "That's why I kept it such a secret. I didn't think [people would] understand. I still think that they're like, 'You're able to run around and play at the highest level.' Well yeah, but I never know when I'm gonna have a bad day, and when I have a bad day, I can't do it."
Boxx has learned to alter her lifting regimen or taper her workouts depending on how she feels, a practice that fits in with Dr. Katz's "live your life" approach to lupus.
"If it's pretty well controlled, then go for it," Katz said. "Don't give up your profession unless you can't do it, or unless you're too sick. I don't know the details [about Boxx], but she is an example of someone who keeps pushing on and going on despite having a chronic multisystem autoimmune disease."
Though the 36-year-old Boxx intends to continue playing soccer as long as she can, going public about her battle with lupus helped her find another great passion.
"I realize there's another calling in life for me," she said. "And that's to work with the Lupus Foundation."
This past Saturday she attended the Walk to End Lupus Now fundraising event in the western suburbs of Chicago, speaking about her experience and leading the walk.
"Now that I'm public and out, it's amazing how many people have supported me on teams, coaches, the foundation itself," she said. "The Chicago Red Stars are behind me and support lupus now, too. The fact that they're supporting me helps me so much."
The Red Stars failed to make the playoffs, so they'll close out their season this Sunday against FC Kansas City. Boxx's season with the team has been a tough one, as she was sidelined for most of the year after knee surgery.
"I was supposed to kind of be the face of the team, and to not be on the field was very, very difficult," Boxx admitted. "To be honest, the whole season, being at every practice and watching how hard everyone worked, all I wanted to do was be back on the field for my teammates. I've been on a lot of teams in all the leagues that I've been in, and by far I think this was one of the most special teams I've been on."
Boxx continues to recover from surgery with a goal of participating in the national team camp in October. And of course, her work with the Lupus Foundation will continue.
"I hope soccer continues, and that's always gonna be my number one passion," she said. "But I think [my work with lupus] is my legacy. I'm really excited to continue working with the foundation and doing everything I can to see if we can find a cure for this. Any chance I have to talk about lupus and what it is, it maybe gets a little more awareness out there, and that's all I can ask for."