Former USWNT star Shannon Boxx on living with lupus amid COVID-19 crisis

In 2012, U.S. women’s national team midfielder Shannon Boxx announced that four years earlier she had been diagnosed with lupus, a chronic autoimmune disease that can be characterized by sudden bouts of intense pain — called flares — to the skin, joints and internal organs.

At that point, Boxx had already cemented herself as an international soccer player, medaling at three World Cups (2003, 2007, 2011), winning two Olympic gold medals (2004, 2008, with a third to come in 2012) and staking out a domestic career in the now-defunct women’s leagues USL W-League, Women’s United Soccer Association and Women’s Professional Soccer (Boxx joined the National Women’s Soccer League in 2013). But unbeknownst to Boxx’s teammates and coaches, she had been playing for most of her career with a debilitating disease that mostly affects women, and one for which African American women (Boxx is biracial) are three times more likely than white women to be diagnosed.

Boxx, who retired from the national team and the NWSL’s Chicago Red Stars in 2015, was also diagnosed with another autoimmune disease, Sjogren’s syndrome, in 2002. The 42-year-old has managed her joint and muscle pain over the years with a mixture of medications, including hydroxychloroquine, an anti-malarial drug that has recently been touted by President Donald Trump to treat COVID-19.

While medical experts have expressed caution about using hydroxychloroquine to treat COVID-19, Trump has nevertheless suggested Americans take the drug, which has led to 30 million doses being donated to the Strategic National Stockpile. This has resulted in shortages at pharmacies across the country, with some lupus patients not being able to get access to a proven lifesaving drug.

In a phone call with The Undefeated from her home in Portland, Oregon, Boxx spoke about living with and playing through lupus, what it’s like for lupus patients to not have access to hydroxychloroquine and what Trump should have done differently.

What symptoms do you deal with living with lupus?

My biggest ones with systemic is the joint pain, muscle pain and fatigue.

How did those symptoms affect both your personal life and life as a professional athlete?

You have flares, so they come and go. When you’re not in a flare you feel pretty good. So soccer-wise, my biggest concern was my joint pain and the fatigue, and there were times I didn’t really know it was coming. I actually did a pretty good job of learning my body really well and how to read it. So a lot of times my flares would come after my wrists would be really sore and really tight and hurtful. And so I knew that was kind of where my flare started, was in my joints in my wrist, and then it would kind of come on stronger.

A lot of times I would wear a lot of compression pants so that my joint pain in my knees, stuff like that, wouldn’t get worse. But for a long time, I didn’t let anybody know. So that was me trying to just push through sometimes, training sessions where I wasn’t the best. As my life has continued, my symptoms have continually gotten worse. I haven’t been in the best of places with my disease in the last five months.

A lot of things I’m feeling now, again, still joint pain, the fatigue, brain fog is a big one lately. There are definitely days I feel very out of it, and I realize that that’s coming from my lupus. The rash, obviously, it used to come and go with flares, now it’s just here all the time.

With my kids, it’s just so hard. We went on a walk today and just walking really hurt a lot of my joints today because I am in a flare. It gets to you. My husband’s like, ‘Are you OK?’ And I’m like, ‘Yeah, I’m just bummed. I’m sad.’ I used to be able to run forever and now I can barely walk sometimes for a mile or two. And that’s pretty heartbreaking. So for me, I want to be able to run around with my kids as long as possible, and to know that there’s days that I can’t do it, it puts you in a really bad place, mentally.

Why have the last five months been so bad?

There’s so many triggers — and that’s one thing I haven’t really figured out, but I know that stress and anxiety, which we’re kind of in that period of time, so that could definitely cause flares to happen. And maybe things are just getting worse and maybe the medication — I’ve been on medication for 12 years; we’re actually trying to work on changing them. So when you’re in the midst of changing medication, too, you have the side effects and flares happen a lot more, so sometimes you have to get worse to get better.

I live in Portland, Oregon, but it hasn’t been sunny. That usually is a trigger too for me, a lot of sun. But being up here, it’s not like it’s been that sunny. But I don’t know, and I think that’s what can be so stressful for patients that have lupus or RA [rheumatoid arthritis] or any autoimmune, is that you just really don’t have all the answers to why this happens.

Are you comfortable with detailing which medications you take for lupus?

I am because of the situation we’re in right now. One of the medications — I take others — but I will mention that I do take hydroxychloroquine, which is obviously the medication that is all over the news right now.

What, if any, side effects have you had from hydroxychloroquine and how has it helped?

In my case, it has always been a medication that I use in combination with another medication. It’s pretty much, as far as I know, the main medication that is given to a lot of lupus patients and RA — rheumatoid arthritis — patients, because it doesn’t have a lot of side effects and it works really well for patients.

There are definitely times that I have missed going back and refilling, and I’ve been off my medication for a couple of days, or I thought I had refills and I didn’t and I had to go to the doctor and it took a couple days. It just sets off an immediate flare. And so it has made me realize that it is controlling my flares a lot more. And even when I do have a flare, it’s making it more minimal.

A big concern that I don’t have, which a lot of lupus patients do, is they have organ issues. And that was a really big concern when I was playing because I was stressing my body so much that they were worried about how high my blood work was. And the longer that my blood work is up that high, that means my internal organs are working that much harder. So that was one that the medication was really able to do is to lower those numbers so that internally I’m not working harder and over exhausting some of my organs.

What’s the difference between taking and not taking your medication as far as the amount of pain that you can be in?

It changes, but a big piece of it — a lot of it — is joint pain. Even now, I’m sitting down and just to get up, I feel like I’m 40 years older than I should be. There were times, even when I was playing on the national team — once it was more well known — I was having teammates cut my steak for me because it hurt so much on my wrist to actually hold onto a fork or a knife. When I was in flares, it even hurt to actually put pressure on my wrist to do the simplest of things like holding a fork or opening a jar or can. There’s definitely times I can’t do something like that and I’m having to pass it to someone else to open it for me.

Today, walking downhill, my hips are just so, so painful that I’m limping to get down the hill. As far as fatigue goes, that’s the hard one to explain. It is this feeling of a weight just sitting on you and just even to lift your head off the pillow takes so much effort and your eyes don’t want to open. When I was playing, it was like my feet were in quicksand. Yet I knew I was completely fit, but yet I could barely move a couple feet without feeling like my feet just wanted to stick in the ground.

Would you consider the medications that you have to take affordable?

No, I think, I think all medication, no matter what disease or illness you have — I’ve done it a couple of times where I’ve gone and maybe saw what the prices were without insurance and it’s huge. It’s so high. And I think that was definitely one concern I had when I was going to be retired. At the time, before President Obama, it was a very scary thing to be a single person with no insurance and have a disease already. It was very hard to get medical insurance at that time before he came aboard. And I was like, I’m really kind of nervous about the situation if I retired because I didn’t want to get into a situation where I did need medication and I had no insurance, because it would be very, very expensive.

The coronavirus is the biggest issue in the world right now, and with your lupus and Sjogren’s syndrome, you’re considered immunocompromised. What precautions have you taken?

Obviously me and my family are doing everything we can to protect ourselves, but others as well. So we’ve been sheltered for four weeks, and the only time that we really do go anywhere is to the grocery store once a week just to get stuff. And that has been me. I feel like I am very strong at this moment and have been the one kind of going, but we wear masks and keep those safety issues of six feet apart and all of that.

But I think my family’s nervous for me. We’re not going anywhere we shouldn’t be going. And we do a really good job even with our kids of [telling people] ‘Move over!’ I feel uncomfortable saying that stuff while they’re riding bikes but, for me, I’m more nervous for other people. I want to make sure that others in my family — my mother — are safe, and older people that we are around, that we’re not around them at this point. So far I’m doing really well. But I haven’t put myself, hopefully at this point, into too many situations.

There have been multiple reports of lupus patients being unable to refill their hydroxychloroquine prescriptions. Have you experienced that?

At this point, no. Weirdly, as this started to come out, that was my first fear. I was like, ‘Oh, my gosh, this is just going to blow up if they think that this is even something that can cure or prevent you from getting COVID-19.’ I had actually got my prescription the week before it all came out and I have a good length of time that I get each prescription. I haven’t even had to refill yet, but I do know so many people that are having a hard time refilling.

But this is a medication that a lot of rheumatoid arthritis and lupus patients take, and to not be able to refill could really put a lot of people in a flare that lasts months, years and could be really damaging to them.

How does it make you feel to know that there’s people out there who can’t get hydroxychloroquine because there’s another use for it now?

It’s terrible. Every single person wants to find something to cure COVID-19 or also make sure that we protect ourselves from that. We all want to still provide a way to see if that is the medication that will, but we just want to make sure that the people that do need it already, and that we know that it works for, just need to have it available to them. And I think it’s scary to know that there’s so many patients that now are suffering because it has been taken away for something that’s still — there’s nothing right now saying that this medication can make you not get COVID-19. It makes me sad that there are a lot of people that are suffering or even worse because they now can’t get the medication that they need.

The president and the administration are pubbing hydroxychloroquine as a way to either prevent or treat COVID-19. How does that make you feel?

I just wish he would put it in a different mindset. We don’t know if that’s the drug or not. So I just wish that he would have said this in a way that would make people realize, ‘Hey, we aren’t saying that this is the cure or this is what’s happening. We need to test it. And this is one of the medications we want to test to see.’ But it’s just the way he put it was, like, ‘This is the drug.’ And it’s like everybody ran out and got it. And that’s not the way that we needed it to be said.