My second year of professional football started great. I worked hard during training and became stronger and faster every day. Then one afternoon – out of the blue – a tsunami washed over me of tiredness. It was so bad that I couldn’t climb the stairs to my apartment on the second floor without stopping.
There I was, a professional athlete who ran for miles a day, and I could hardly make it up the stairs.
Nevertheless, I didn’t think it was serious. “It’s mono,” I thought. I would sleep in and feel better in a few days. But the fatigue was relentless. I could hardly move in the next week. My legs were so heavy that they were like in Quicksand. When I was in the middle of the practice field, it hit me that something was seriously wrong with my body.
The team coach told me that I should see a health service provider immediately. This provider ordered blood tests, and it turned out that my white parameters were very low.
He referred me to an oncologist who shook me into my core. I didn’t know much about cancer, but this thought hadn’t occurred to me. Fortunately, when I saw the oncologist the next day, he said I had no cancer, but he wanted me to see a rheumatologist.
I was lucky enough to make an appointment for the following week and I continued to play football, even though I ran to steam. When I saw the rheumatologist, he said that my liver enzymes were really high and he wanted to carry out a screen test. Of course I didn’t know what that was, but I said yes. He took two innocent strips of paper and put them under my eyelids. It was the worst experience of all time. These five minutes felt like five years. When he finally pulled his eyes off his eyes, they were completely dry, which meant that my tear glands did not produce any liquid.
“You have Sjögren,” he said. He handed me a few brochures and explained that I had an autoimmune disease that caused moisturizing glands in my body and caused dry eyes, dry mouth and fatigue. In my case, the tiredness was extreme.
And that’s it. He sent me pretty much on my way and made it sound as if Sjögren’s illness wasn’t a big deal. I just would have to push through the tiredness until I felt better.
But everything got worse.
In addition to the heavy and fatigue, I started joint pain and muscle pain at a level that I had never felt before. As an athlete, I was very aware and knew that what I experienced was not normal. I wondered if it could be associated with the Sjögren disease, but in 2002 there was not much information out there. The provider gave me all the resources (brochures) that he had. Shortly after I was diagnosed, I moved to another city and another team that is common in football and said from the front with a new health service provider every six months.
For years I felt like the only person in the world with Sjögren. I didn’t know anyone who had it, and I hid my symptoms of teammates and coaches because I feared that they would think I couldn’t play at the elite level. This was not just Paranoia – I told my first coach that I had the illness of Sjögren immediately after my diagnosis and that I went to a bank from the beginning of every game at the beginning. So I did not take any risk.
Although I tried to keep the disease secret, there were physical symptoms that I could not hide. Some games, I literally foamed my mouth because I didn’t make enough saliva and couldn’t just break for water whenever I wanted.
The mysterious joint and muscle pain never stopped – and I never stopped finding out why it happened. In 2008 I went to a new provider who ordered various tests. When the laboratories came back, she diagnosed me with lupus. She said it made sense because many people with Sjögren have additional autoimmune diseases and lupus is common.
I was stunned. Two diseases? How much can a person handle? But I was also relieved. I was in pain for years and had problems together and nobody knew why. Now I knew that I had to do with a different illness and I could both take it on frontally.
I told my family about the double diagnosis, but nobody else. I continued to push myself through the day and didn’t feel good and played badly and couldn’t express why. And there were many days when loneliness to keep everything a secret injured more than anything. I won my second Olympic gold medal this year, but it was one of the most difficult times in my life.
In 2011 I started to report voluntarily for the Lupus Foundation, and I was inspired by research and the growing community that I was able to use my platform to raise awareness of lupus and sjögren disease.
I told my trainers first and then my teammate. Everyone said the same thing: “We had no idea.” And everyone was incredible – it makes me emotionally when I think of all the friendliness and support that they immediately gave me. One evening at dinner I had a torch and the joint pain in my wrist and fingers were so bad that I could cut my steak. My teammate next to me did not say a word – she only reached for my plate, cut up the steak, put it back in front of me and continued with her dinner. Later that night I struggled to step back from the bus when I suddenly picked up teammates around me and helped myself to the ground. Nobody looked at me differently or treated me differently. I know in my heart that your support was the reason why I could continue for so long.
2024
In 2012 I started with both illnesses and won my third (and last) Olympic gold medal. I retired in 2015 and started to raise more energy into awareness of lupus and Sjögren.
Today the diseases affect my life more than when I played professionally. My eyes are constantly grainy and painful because I don’t do enough liquid to promote them with moisture and clean. I still have a lot of pain together and on most days I am so tired that I don’t really remember how it is to have a lot of energy. This is my new normality. Everything demands a tribute. But I am grateful that there is a lot of support in the community of the Sjögren. I know that we are all in the same team and strive for treatments that don’t just help us live our lives. Healing is the goal.
This educational resource was created with the support of Amgen, a healthy member of the Corporate Advisory Council.
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