My second 12 months {of professional} soccer began out nice. I labored arduous throughout coaching, and I received stronger and quicker every single day. Then one afternoon — out of the blue — a tsunami of fatigue washed over me. It was so unhealthy I couldn’t climb the steps to my second-floor residence with out stopping to relaxation.
There I used to be, an expert athlete operating miles a day, and I might barely make it up the steps.
Nonetheless, I didn’t suppose it was something severe. “It’s mono,” I believed. I’d sleep it off and really feel higher in just a few days. However the fatigue was relentless. By the following week, I might barely transfer. My legs have been so heavy they felt like they have been in quicksand. As I stood in the midst of the follow area, it hit me that there was one thing significantly incorrect with my physique.
The group coach advised me to see a healthcare supplier instantly. That supplier ordered blood work, and it turned out, my white blood rely was actually low.
He referred me to an oncologist, which shook me to my core. I didn’t know a lot about most cancers however that thought hadn’t crossed my thoughts. Fortunately, after I noticed the oncologist the next day, he stated I didn’t have most cancers, however he needed me to see a rheumatologist.
I used to be fortunate to get an appointment for the next week, and I continued to play soccer although I used to be operating on fumes. Once I noticed the rheumatologist, he stated my liver enzymes have been actually excessive and he needed to do a Schirmer’s take a look at. After all, I didn’t know what that was, however I stated sure. He took two innocent-looking strips of paper and caught them beneath my eyelids. It was the worst expertise ever. These 5 minutes felt like 5 years. When he lastly pulled the strips from my eyes, they have been utterly dry, which meant my tear glands weren’t producing fluid.
“You could have Sjögren’s,” he stated. He handed me some pamphlets and defined that I had an autoimmune illness that attacked moisture-producing glands in my physique and prompted dry eyes, dry mouth and bouts of fatigue. In my case, the fatigue was excessive.
And that was it. He just about despatched me on my approach and made it sound like Sjögren’s disease wasn’t a giant deal. I’d simply should push by way of the tiredness till I felt higher.
However all the things received worse.
On high of the heaviness and fatigue, I began having joint ache and muscle ache on a degree I’d by no means felt earlier than. As an athlete, I used to be very conscious of my physique and I knew what I used to be experiencing wasn’t regular. I puzzled if it might be linked to Sjögren’s illness, however in 2002 there wasn’t a lot data on the market. The supplier gave me all of the assets (pamphlets) he had. Shortly after I used to be recognized, I moved to a different metropolis and one other group, which is frequent in soccer and meant I needed to begin over with a brand new healthcare supplier each six months.
For years, I felt like the one particular person on the earth with Sjögren’s illness. I didn’t know anybody who had it, and I hid my signs from teammates and coaches as a result of I used to be afraid they’d suppose I couldn’t play on the elite degree. This wasn’t simply paranoia — I advised my first coach I had Sjögren’s illness proper after I used to be recognized, and I went from beginning each sport to mainly being benched. So I wasn’t taking any possibilities going ahead.
Though I attempted to maintain the illness a secret, there have been bodily signs I couldn’t disguise. Some video games, I used to be actually foaming on the mouth as a result of I don’t make sufficient saliva and I couldn’t simply break for water each time I needed.
The mysterious joint and muscle ache by no means stopped — and I by no means stopped attempting to determine why it was taking place. In 2008, I went to a brand new supplier who ordered some completely different assessments. When the labs got here again, she recognized me with lupus. She stated it made sense as a result of many individuals with Sjögren’s illness have further autoimmune illnesses, and lupus is a typical one.
I used to be shocked. Two illnesses? How a lot can one particular person deal with? However I used to be additionally relieved. For years, I’d been in ache and having joint points and nobody knew why. Now I knew I used to be coping with one other illness, and I might deal with each head-on.
I advised my household concerning the double analysis, however nobody else. I continued to push by way of days I didn’t really feel good and performed unhealthy and couldn’t specific why. And there have been many days when the loneliness of protecting all of it a secret damage greater than anything. I gained my second Olympic gold medal that 12 months, but it surely was one of many hardest instances in my life.
In 2011, I began volunteering for the Lupus Basis, and I used to be so impressed by the analysis and rising neighborhood that I noticed I might use my platform to assist carry consciousness to each lupus and Sjögren’s illness.
I advised my coaches first after which my teammates. Everybody stated the identical factor: “We had no clue.” And everybody was superb — it makes me emotional after I consider all of the kindness and help they gave me instantly. One evening at dinner, I used to be having a flare and the joint ache in my wrist and fingers was so unhealthy it was arduous for me to chop my steak. My teammate subsequent to me didn’t say a phrase — she simply grabbed my plate, reduce up the steak, positioned it again down in entrance of me and continued along with her dinner. Later that evening, I used to be struggling to step down from the bus when abruptly I had teammates throughout me selecting me up and serving to me to the bottom. Nobody checked out me in a different way or handled me in a different way. I do know in my coronary heart that their help was the explanation I used to be in a position to go on and play for thus lengthy.
2024
In 2012, I went public about dwelling with each illnesses and gained my third (and ultimate) Olympic gold medal. I retired in 2015 and began placing extra of my vitality into elevating consciousness about lupus and Sjögren’s illness.
In the present day the illnesses have extra of an influence on my life than after I was taking part in professionally. My eyes are continuously grainy and painful as a result of I don’t make sufficient fluid to maintain them moisturized and clear. I nonetheless have loads of joint ache and, most days, I’m so drained I don’t actually bear in mind what it’s prefer to have loads of vitality. That is my new regular. All of it takes a toll. However I’m grateful there’s loads of help within the Sjögren’s neighborhood. I do know we’re all on the identical group, striving for developments in therapies that don’t simply assist us reside our lives. A remedy is the purpose.
This academic useful resource was created with help from Amgen, a HealthyWomen Company Advisory Council member.
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