My second year of professional football began very well. I worked hard during training, and I became more and faster every day. Then, one afternoon, out of nowhere, a fatigue tsunami dragged me about me. It was so bad that I could not climb the stairs to my apartment on the second floor without stopping to rest.
There he was, a professional athlete who ran miles a day, and could barely climb the stairs.
Still, I didn’t think it was anything serious. «It’s monkey,» I thought. I would sleep and feel better in a few days. But fatigue was relentless. For the following week, I could barely move. My legs were so heavy that they felt as if they were in Movediza sand. While I was standing in the middle of the practice field, I realized that there was something very bad with my body.
The team coach told me to see a medical care provider immediately. That supplier ordered blood analysis, and it turned out that my white blood count was really low.
He referred to a oncologistThat shook my nucleus. I didn’t know much about cancer, but that thought had not crossed me. Fortunately, when I saw the oncologist the next day, he said he had no cancer, but wanted him to see a Rheumatologist.
I was lucky to get an appointment for the following week, and I kept playing football even though I was running the fumes. When I saw the rheumatologist, he said that my liver enzymes were really high and that I wanted to do a Schirmer test. Of course, I didn’t know what that was, but I said yes. He took two innocent paper strips and caught them under my eyelids. It was the worst experience in history. Those five minutes felt like five years. When he finally got the strips of my eyes, they were completely dry, which meant that my tear glands did not produce liquid.
«You have Sjögren,» he said. He gave me some pamphlets and explained that I had an autoimmune disease that attacked the moisture producing glands in my body and caused dry eyes, dry mouth and episodes of fatigue. In my case, fatigue was extreme.
And that was all. He almost sent me on my way and made it sound like Sjögren’s disease It was not a big problem. I would only have to overcome tiredness until I felt better.
But everything got worse.
In addition to heaviness and fatigue, I began to have pain in the joints and muscle pain at a level that I had never felt before. As a athlete, I was very aware of my body and I knew that what I was experiencing was not normal. I was wondering if I could be connected to Sjögren’s disease, but in 2002 there was not much information out there. The supplier gave me all the resources (pamphlets) that I had. Shortly after they were diagnosed, I moved to another city and another team, which is common in football and meant that I had to start again with a new medical care provider every six months.
For years, I felt as the only person in the world with Sjögren’s disease. I didn’t know anyone who had it, and hid my symptoms of teammates and coaches because I was afraid to think I couldn’t play at the elite level. This was not just the paranoia: I told my first coach that I had Sjögren’s disease just after they diagnosed me, and I went from starting each game to be basically in banking. So I didn’t risk in the future.
Although I tried to keep the disease a secret, there were physical symptoms that I could not hide. Some games literally was foam in my mouth because I don’t make enough saliva and could not simply break the water when I wanted to.
The mysterious articulation and muscle pain never stopped, and I never stopped trying to find out why it was happening. In 2008, I went to a new supplier that ordered some different tests. When the laboratories returned, she diagnosed me lupus. She said it made sense because many people with Sjögren disease have additional autoimmune diseases, and lupus is common.
I was stunned. Two diseases? How much can a person handle? But I also felt relieved. For years, I had pain and had joint problems and nobody knew why. Now I knew I was dealing with another disease, and could both address in front.
I told my family about the double diagnosis, but no one else. I continued advancing in days, I didn’t feel good and I played badly and I couldn’t express why. And there were many days when the loneliness of maintaining a whole secret hurt more than anything else. I won my second Olympic gold medal that year, but it was one of the most difficult moments of my life.
In 2011, I began to be a volunteer for the lupus Foundation, and I was both inspired by the research and the growing community that I realized that I could use my platform to help raise awareness about Lupus and Sjögren’s disease.
First I told my coaches and then my teammates. They all said the same thing: «We had no idea.» And everyone was incredible, it excites me when I think about all the kindness and support they gave me immediately. One night at dinner, I was having a sparkling and the pain in the doll joints and the fingers was so bad that it was difficult for me to cut my steak. My teammate by my side did not say a word: she simply grabbed my dish, cut the steak, put it back in front of me and continued with her dinner. Later that night, I was struggling to give up the bus when I suddenly had teammates around me picking up and helping me to the ground. No one looked at me differently or treated me differently. I know in my heart that his support was the reason I could continue and play for so long.
2024
In 2012, I made public about living with both diseases and won my third (and final) Olympic gold medal. I retired in 2015 and began to put more about my energy in awareness about Lupus and Sjögren’s disease.
Today diseases have more impact on my life than when I played professionally. My eyes are constantly granulous and painful because I do not make enough liquid to keep them hydrated and clean. I still have a lot of joint pain and, most of the days, I am so tired that I really do not remember what it is like to have a lot of energy. This is my new normality. Everything has a toll. But I am grateful that there is a lot of support in the Sjögren community. I know that we are all in the same team, fighting for advances in treatments that not only help us live our lives. A cure is the goal.
This educational resource was created with the support of Amgen, a member of the Corporate Advisory Council of Greetings.
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