Suni Lee Shares Exclusive Essay On Her Battle With Kidney Disease
I was probably on the highest of highs. I had just finished competing at the Tokyo Olympics in 2021, bringing home three medals—including the gold in the women’s gymnastics all-around. I moved to Los Angeles to compete on Dancing with the Stars, then returned to Auburn University and competed for a year and a half. I was the healthiest I had ever been, and even announced my plans to compete for a spot in the 2024 Olympics.
Then, in my second year at Auburn, the high came crashing down.
I woke up one morning and my face and body were completely swollen. I didn’t recognize myself in the mirror. I couldn’t lift myself up to do the uneven bars. My coaches were confused. I was confused. It was really scary, because I didn’t know what was going on—and neither did anyone else. I felt so lonely. I ended up moving back home to Minnesota, unable to compete.
When I first saw a doctor, they told me it was allergies. But I knew that wasn’t the answer. I had gained 8 pounds overnight. The swelling in my body was something I had never experienced. I didn’t know what this was, but I knew it was more than allergies and that I had to push further. I found another doctor, who sent me to another doctor for testing, including a biopsy. Eventually, we got to the bottom of it.
I finally had an answer. I have kidney disease. Two rare kidney diseases.
I was in shock. Before I got sick, I didn’t really know anything about kidney disease other than that it was a serious illness. It never occurred to me that it could happen to someone my age or someone as healthy and fit as I was.
My mind was racing. I was so afraid I wouldn’t be able to compete again. It was heart wrenching not being able to do the thing I loved. Gymnastics is my safe space. Whenever I’m working through anything emotionally, I go to the gym and work it out. It’s my therapy. It’s my sacred place.
So when the doctor told me my kidney disease meant I couldn’t compete—that I probably would never do gymnastics again—it was probably my lowest low.
But in that moment, when everything came crashing down, I also felt my greatest surge of determination. I saw the challenge laid out before me, and I faced it head on. I thought to myself, Just watch.
My coaches and I worked hard to figure out how I could continue gymnastics while navigating my kidney disease; how to stay safe performing skills while my weight fluctuated with retained water and swelling. It was new for all of us. I had to relearn everything, and my coaches had to relearn how to coach me. But we figured it out together. I’m so grateful for my team.
On top of the physical challenges, I also had to face mental challenges. There were days when I was so frustrated that my body couldn’t do what it used to that I’d leave the gym in anger, determined to quit. Sometimes I wasn’t even sure I wanted to compete. I didn’t want anybody to know that something was wrong with me or to feel sorry for me. I didn’t want to have a pass for not performing at my peak, at what I knew I was capable of. I wasn’t sure it was worth all that I was pushing through to keep competing.
But then I thought about little Suni and the big dreams she had. And I knew I couldn’t let that little girl and her big dreams down. So I kept pushing, kept putting one foot in front of the other—every day a little stronger, every day doing my best and nothing more or less.
Olympic Trials was one of the most emotional and validating competitions of my life. I don’t think most people realized the battle I had to go through to get there. I clawed my way back with everything I had. I just gave it my all—my personal best—which, to me, is always good enough. And to be named to the team after all of that was surreal. Like, How did I just do that? Is this really happening? That moment, knowing I was going to be representing my country on my second Olympic team, was one of the greatest moments of my life.
And when I finally reached the podium in Paris, earning three more Olympic medals for my country, all that was going through my mind was how proud I was of myself for making it through this journey.
Unfortunately, kidney disease is the fastest growing non-contagious disease in the United States. It affects one in seven Americans, but it often has few or no symptoms. This means that nine out of 10 people living with kidney disease do not know that they have it. And as I learned from my experience, it doesn’t necessarily matter how healthy, active, or young you are. It can happen to anybody.
Kidney disease cannot be cured. One of the hardest parts about living with kidney disease is knowing that I will have it for my whole life. It will never go away, and I have to face the fact that I will never be the same Suni I was before everything happened. But kidney disease can be treated, especially if you get an accurate diagnosis. I stay very close with my care team, noting any changes in how I feel. It’s incredibly important to keep those lines of communication open. And you don’t have to be the same person you were before the trauma you’ve been through—you can be better.
That is why the American Kidney Fund (AKF)’s Know Your Kidneys, Know Your Cause initiative is so important to me. AKF is helping people understand the reason behind their kidney disease, so they can have the best chance of slowing down their disease with the right treatment. Until I experienced it myself, I didn’t know how hard it can be for people to get an accurate diagnosis.
I am a professional athlete who has a team in my corner to prioritize my health, and I still struggled to get the help I needed. I know others must be facing the same problems, which is why I wanted to share my story. I decided to partner with AKF to spread the word about the many resources that are available to help manage this disease before it gets worse.
One of the most overwhelming feelings when I was diagnosed with kidney disease was loneliness. I felt like no one understood what I was going through, and the doctors weren’t listening to me. But since sharing my kidney disease journey, I’ve received an overwhelming number of supportive and heartfelt messages from an entire community of people living with kidney disease. I realized that I’m not alone.
These days, I’m taking some time for myself, without the pressure of a huge goal, for the first time in my life. I’m exploring new passions, like fashion and acting, and having fun with the unknown right now. I have learned through the high highs and low lows that I will never be the Suni I was before—because I am a stronger Suni than I ever thought I could be. When it comes to your health, it is so important to advocate for yourself, to use your voice even when it is shaking.
Suni Lee is an Olympic gold medalist and gymnastics champion, as well as an ambassador for the American Kidney Fund.
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