My second yr {of professional} soccer began out nice. I labored arduous throughout coaching, and I acquired stronger and sooner each day. Then one afternoon — out of the blue — a tsunami of fatigue washed over me. It was so dangerous I couldn’t climb the steps to my second-floor condominium with out stopping to relaxation.
There I used to be, knowledgeable athlete working miles a day, and I might barely make it up the steps.
Nonetheless, I didn’t suppose it was something critical. “It’s mono,” I believed. I’d sleep it off and really feel higher in a couple of days. However the fatigue was relentless. By the subsequent week, I might barely transfer. My legs had been so heavy they felt like they had been in quicksand. As I stood in the midst of the follow area, it hit me that there was one thing significantly unsuitable with my physique.
The staff coach informed me to see a healthcare supplier instantly. That supplier ordered blood work, and it turned out, my white blood depend 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 wished me to see a rheumatologist.
I used to be fortunate to get an appointment for the next week, and I continued to play soccer despite the fact that I used to be working on fumes. After I noticed the rheumatologist, he stated my liver enzymes had been actually excessive and he wished 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 below 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 had been utterly dry, which meant my tear glands weren’t producing fluid.
“You’ve gotten 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 brought on 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 the tiredness till I felt higher.
However every part acquired worse.
On prime of the heaviness and fatigue, I began having joint ache and muscle ache on a stage 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 related to Sjögren’s illness, however in 2002 there wasn’t a lot info on the market. The supplier gave me all of the assets (pamphlets) he had. Shortly after I used to be identified, I moved to a different metropolis and one other staff, which is widespread 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 individual on this planet 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 might suppose I couldn’t play on the elite stage. This wasn’t simply paranoia — I informed my first coach I had Sjögren’s illness proper after I used to be identified, and I went from beginning each sport to principally being benched. So I wasn’t taking any probabilities going ahead.
Though I attempted to maintain the illness a secret, there have been bodily signs I couldn’t conceal. 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 at any time when I wished.
The mysterious joint and muscle ache by no means stopped — and I by no means stopped making an attempt to determine why it was occurring. In 2008, I went to a brand new supplier who ordered some completely different exams. When the labs got here again, she identified me with lupus. She stated it made sense as a result of many individuals with Sjögren’s illness have further autoimmune ailments, and lupus is a standard one.
I used to be surprised. Two ailments? How a lot can one individual 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 informed my household in regards to the double prognosis, however nobody else. I continued to push by days I didn’t really feel good and performed dangerous and couldn’t specific why. And there have been many days when the loneliness of preserving all of it a secret damage greater than anything. I gained my second Olympic gold medal that yr, however it was one of many hardest occasions in my life.
In 2011, I began volunteering for the Lupus Basis, and I used to be so impressed by the analysis and rising group that I noticed I might use my platform to assist carry consciousness to each lupus and Sjögren’s illness.
I informed 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 assist they gave me immediately. One night time at dinner, I used to be having a flare and the joint ache in my wrist and fingers was so dangerous 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 together with her dinner. Later that night time, I used to be struggling to step down from the bus when abruptly I had teammates throughout me choosing me up and serving to me to the bottom. Nobody checked out me otherwise or handled me otherwise. I do know in my coronary heart that their assist was the rationale I used to be in a position to go on and play for thus lengthy.
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In 2012, I went public about dwelling with each ailments and gained my third (and remaining) Olympic gold medal. I retired in 2015 and began placing extra of my vitality into elevating consciousness about lupus and Sjögren’s illness.
Right now the ailments have extra of an affect on my life than after I was taking part in professionally. My eyes are consistently grainy and painful as a result of I don’t make sufficient fluid to maintain them moisturized and clear. I nonetheless have plenty of joint ache and, most days, I’m so drained I don’t actually bear in mind what it’s prefer to have plenty of vitality. That is my new regular. All of it takes a toll. However I’m grateful there’s plenty of assist within the Sjögren’s group. I do know we’re all on the identical staff, striving for developments in therapies that don’t simply assist us stay our lives. A remedy is the aim.
This academic useful resource was created with assist from Amgen, a HealthyWomen Company Advisory Council member.
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