My second year of professional soccer started out great. I worked hard during training, and I got stronger and faster every day. Then one afternoon — out of the blue — a tsunami of fatigue washed over me. It was so bad I couldn’t climb the stairs to my second-floor apartment without stopping to rest.
There I was, a professional athlete running miles a day, and I could barely make it up the stairs.
Still, I didn’t think it was anything serious. “It’s mono,” I thought. I’d sleep it off and feel better in a few days. But the fatigue was relentless. By the next week, I could barely move. My legs were so heavy they felt like they were in quicksand. As I stood in the middle of the practice field, it hit me that there was something seriously wrong with my body.
The team trainer told me to see a healthcare provider immediately. That provider ordered blood work, and it turned out, my white blood count was really low.
He referred me to an oncologist, which shook me to my core. I didn’t know much about cancer but that thought hadn’t crossed my mind. Thankfully, when I saw the oncologist the following day, he said I didn’t have cancer, but he wanted me to see a rheumatologist.
I was lucky to get an appointment for the following week, and I continued to play soccer even though I was running on fumes. When I saw the rheumatologist, he said my liver enzymes were really high and he wanted to do a Schirmer's test. Of course, I didn’t know what that was, but I said yes. He took two innocent-looking strips of paper and stuck them under my eyelids. It was the worst experience ever. Those five minutes felt like five years. When he finally pulled the strips from my eyes, they were completely dry, which meant my tear glands weren’t producing fluid.
“You have Sjögren’s,” he said. He handed me some pamphlets and explained that I had an autoimmune disease that attacked moisture-producing glands in my body and caused dry eyes, dry mouth and bouts of fatigue. In my case, the fatigue was extreme.
And that was it. He pretty much sent me on my way and made it sound like Sjögren’s disease wasn’t a big deal. I’d just have to push through the tiredness until I felt better.
But everything got worse.
On top of the heaviness and fatigue, I started having joint pain and muscle pain on a level I’d never felt before. As an athlete, I was very aware of my body and I knew what I was experiencing wasn’t normal. I wondered if it could be connected to Sjögren’s disease, but in 2002 there wasn’t much information out there. The provider gave me all the resources (pamphlets) he had. Shortly after I was diagnosed, I moved to another city and another team, which is common in soccer and meant I had to start over with a new healthcare provider every six months.
For years, I felt like the only person in the world with Sjögren’s disease. I didn’t know anyone who had it, and I hid my symptoms from teammates and coaches because I was afraid they would think I couldn’t play at the elite level. This wasn’t just paranoia — I told my first coach I had Sjögren’s disease right after I was diagnosed, and I went from starting every game to basically being benched. So I wasn’t taking any chances going forward.
Although I tried to keep the disease a secret, there were physical symptoms I couldn’t hide. Some games, I was literally foaming at the mouth because I don’t make enough saliva and I couldn’t just break for water whenever I wanted.
The mysterious joint and muscle pain never stopped — and I never stopped trying to figure out why it was happening. In 2008, I went to a new provider who ordered some different tests. When the labs came back, she diagnosed me with lupus. She said it made sense because many people with Sjögren’s disease have additional autoimmune diseases, and lupus is a common one.
I was stunned. Two diseases? How much can one person handle? But I was also relieved. For years, I’d been in pain and having joint issues and no one knew why. Now I knew I was dealing with another disease, and I could tackle both head-on.
I told my family about the double diagnosis, but no one else. I continued to push through days I didn’t feel good and played bad and couldn’t express why. And there were many days when the loneliness of keeping it all a secret hurt more than anything else. I won my second Olympic gold medal that year, but it was one of the hardest times in my life.
In 2011, I started volunteering for the Lupus Foundation, and I was so inspired by the research and growing community that I realized I could use my platform to help bring awareness to both lupus and Sjögren’s disease.
I told my coaches first and then my teammates. Everyone said the same thing: “We had no clue.” And everyone was amazing — it makes me emotional when I think of all the kindness and support they gave me right away. One night at dinner, I was having a flare and the joint pain in my wrist and fingers was so bad it was hard for me to cut my steak. My teammate next to me didn’t say a word — she just grabbed my plate, cut up the steak, placed it back down in front of me and continued with her dinner. Later that night, I was struggling to step down from the bus when suddenly I had teammates all around me picking me up and helping me to the ground. No one looked at me differently or treated me differently. I know in my heart that their support was the reason I was able to go on and play for so long.
2024
In 2012, I went public about living with both diseases and won my third (and final) Olympic gold medal. I retired in 2015 and started putting more of my energy into raising awareness about lupus and Sjögren’s disease.
Today the diseases have more of an impact on my life than when I was playing professionally. My eyes are constantly grainy and painful because I don’t make enough fluid to keep them moisturized and clean. I still have a lot of joint pain and, most days, I’m so tired I don’t really remember what it’s like to have a lot of energy. This is my new normal. All of it takes a toll. But I’m thankful there’s a lot of support in the Sjögren’s community. I know we’re all on the same team, striving for advancements in treatments that don’t just help us live our lives. A cure is the goal.
This educational resource was created with support from Amgen, a HealthyWomen Corporate Advisory Council member.
