For much of her professional soccer career, while excelling on a global stage, Shannon Boxx struggled with symptoms of an autoimmune disease that was attacking her body. It took her six years to actually put a name to what was happening to her — and, to realize that she could be a voice for change.
Shannon became a professional athlete in 2001. Her soccer career highlights include playing every minute of all five U.S. games in the 2008 Summer Olympics; winning three Olympic gold medals; and competing in the FIFA Women’s World Cup in 2003, 2007, 2011, and 2015.
She did all this while dealing with lupus, which was finally diagnosed in 2008. And for years, she kept it all a secret.
“The symptoms I had were extreme fatigue and joint pain, and those are two very big things that you can’t have while playing [soccer] at the elite level,” Shannon told HealthCentral. “So I actually kept it quiet for a lot of years because I was very fearful of my job. I didn’t know how my coaches would react to [the news].”
Keeping her diagnosis private made for an extremely lonely few years after her diagnosis. Despite her symptoms, she did her best not to let on that anything was amiss on the field.
Shannon and her doctor worked together to determine the best course of treatment for her, finding solutions that would allow her to keep playing at the professional level safely. Over time, Shannon learned to understand the signals her body was sending her — the different symptoms and the patterns in which they came and went.
“Lupus is a disease of flares,” Shannon said. “You could be in remission one second, and in the next second you could be having a flare and all of those symptoms were affecting you, so it was very difficult.”
When people talk about lupus, they are usually referring to the most common type: systemic lupus erythematosus, which is what Shannon has. About 16,000 new cases of this type of lupus are reported in the U.S. yearly, according to the National Resource Center on Lupus.
This complex autoimmune disease can affect any organ in the body, according to Tania González-Rivera, M.D., a rheumatologist specializing in the condition. Beyond the joint pain and fatigue that Shannon experiences, lupus can also cause hair loss, sensitivity to the sun, and rashes. The rashes typically appear on the face (often called the “butterfly rash”).
“Many of the symptoms can present in other conditions, so [lupus] can be this great mimicker,” Dr. González-Rivera told HealthCentral. “In addition to that, there are no specific blood tests for lupus, so that complicates the picture in terms of getting to a right diagnosis.”
While the cause of lupus is still unknown, women — and especially African-American women — are the group with the highest risk, according to the National Institutes of Health. There is no cure, but lupus can be managed. Treatments aim to treat and prevent flares and reduce organ damage and other problems the disease can cause.
Eventually, Shannon felt she couldn’t keep her condition a secret any longer. She realized that being in the public eye gave her a powerful voice others did not have.
“Not enough people know what lupus is. There isn’t a cure for it, and I want there to be a cure – I want people to understand what this is so that they can understand what [people with lupus] are going through,” she said. “And for me, that became more important than my job. So I became an advocate and I spoke up.”
Shannon found that her world changed after she opened up about her condition in 2012. Playing soccer became easier; she now had the support of her teammates, and she knew she could count on them to be understanding when she had hard days with her symptoms. But the impact of going public was even further-reaching: her newfound role as an advocate was empowering.
“Being on the field, and you go to sign autographs after and to have people scream out to you, ‘Thank you so much for bringing awareness to lupus,’ or ‘My mother has lupus and sees you out here and realizes that she may be able to have an active life…’ I think that’s the most rewarding piece about opening up and telling my story,” Shannon said. “I hope that I can inspire other people who have lupus or know someone who has lupus.”
While Shannon, now 39, may have retired from professional soccer, her life is busier than ever as a mom of two young kids that keep her on the move. In the past, pregnancy with lupus was considered an impossibility. Now, according to the National Resource Center on Lupus, it’s possible to have a successful pregnancy with the right medical care. Still, all pregnancies with lupus are considered high-risk. Shannon said she feels lucky to have two healthy kids.
“They are the best thing that has happened to me, and now my goal is to make sure that I stay healthy for them,” she said.
Just because someone with lupus may not always look sick, Shannon said, that doesn’t mean it’s not a serious condition. This is the biggest misconception she encounters.
“People are dying from lupus; it’s a very serious disease, and there’s so many ranges of the disease,” Shannon said. “Everybody is very different, and I think that’s what is hard for people to [wrap their mind around], is that no one person is the same with this disease.”
If you think you may have symptoms of lupus, Dr. González-Rivera said, the best thing you can do is to see your doctor and have an open conversation.
“Physicians are there to help, but it’s very important for there to be a partnership between the patient and the physician in order to get to a diagnosis and also lead that active life that lupus patients can have, despite having bad days,” she said.
In her life, Shannon has scored goal after goal on the soccer field. Now, she hopes she can be just as successful in her goal to advocate for the disease she feels is so misunderstood.
“Lupus lives with me every single day,” Shannon said. “I have bad days, [but] I just think about how tomorrow’s a new day.”
To get more information on lupus, including a symptom tracker, go to usinlupus.com.
Lara is a digital editor for HealthCentral. She is the site’s staff writer, Sexual Health editor, and email newsletter chief. Previously, she worked as the patient education editor at the American College of OB-GYNs, where she became obsessed with learning about women’s health, and as a news writer/editor at WTOP.com. Connect with her on Twitter @laradesanto.