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Amy Schwem: The Autoimmune Athlete


My name is Amy Schwem and I am a sophomore for William and Mary volleyball. I am super thankful for the opportunity to be able to share my story!


Something that might be a little different about me is that my mental health challenges have not always stemmed from my sport. Volleyball has always been a release for me and has served as the part of my life that is a constant, which at times has felt like the only constant. So much of my life has revolved around the sport I love so much that I got to a point where, like so many high-level athletes, being an athlete was the main source of my identity.


I coped through many challenges I faced by training and competing, and what I didn’t realize during this time of my life was that I was missing out on the bigger picture, and neglecting the other parts of my life that are what make me me.


Fast forward to the summer going into my first ever college preseason, and I was diagnosed with an autoimmune disease. For those of you who are unfamiliar with autoimmune disease, it is when your immune system is overactive, and mistakenly attacks healthy tissues within your body. There are many different kinds, but the kind I have is progressive and has no cure.


I received this information the day I left home to start my new life 13 hours away and begin my first college preseason - a day I had looked forward to for my whole life. I was so overwhelmed seeing my test results for the first time and learning about how quickly my life was going to change for so many reasons. And yet, even with a staff that I loved and knew would be supportive, I downplayed the entire thing.


I remember talking to my coaches for the first time after getting my test results – I don’t know what was shaking harder, my voice or my hands. Rather than conveying to them the severity of my diagnosis and how scared I was, I told them over and over that it really is not a big deal. That I will start meeting with a doctor and get on some medications and that everything will be fine. I was so worried about the same thing that athletes everywhere are worried about- being seen as weak. I didn’t want to ruin my reputation or my chances of making a starting lineup before I even got the chance to prove myself, and I didn’t want them to think they had made a mistake recruiting me.


For many of these same reasons, I chose to tell as few people as possible about my diagnosis. The only people that knew were my immediate family, two of my coaches, and my best friends. I didn’t even share the diagnosis with our athletic trainer or strength coach, because I didn’t want to be treated differently. Obviously, that was a huge mistake. But even with the best support system around me that I could ever ask for, I had been so conditioned to think that athletes aren’t allowed to struggle that I couldn’t even bring myself to ask for help when it came to a life-changing diagnosis.


I scratched and clawed my way through my first college season, earned a starting spot, and played all the way around. I became the queen of putting on a face and hiding things no matter how much pain I was in or how much I was struggling. But like I said earlier, my disease progresses with time, and the physical load of college sports only accelerates it.


My first Spring season hit me like a ton of bricks. I had a hip injury that would not heal, I was in so much pain and felt like crap all the time. It felt like I was at risk of losing the thing that I thought made me whole.


Two things changed in me after those couple months:


#1, I started exploring other parts of my identity and other pieces of my puzzle that make me who I am. I am a well-rounded person, and while volleyball is and always will be a huge part of my life, it’s not the only part.


And #2 and arguably most importantly: I started sharing my load with people and forcing myself to ask for help.


That Spring I realized that this is a battle I cannot fight alone, and once I started letting people in, I realized I was foolish for thinking I had to. I slowly started sharing the diagnosis with people in my immediate circle - first my teammates and my entire staff, and then with extended family and other friends.


A few months later during this past summer, I launched an organization of my own called The Autoimmune Athlete, which is a platform designed to help other athletes out there who are just like me, so that no one has to go through it alone.


I went from being so afraid to tell anyone about what I was going through to being willing to tell anyone that would listen out of hopes that it would help even just one person. This past season looked a lot different for me. I lived in doctors' offices and in the training room, just to stay at a level that allowed me to compete in matches. The physical and mental challenges that were thrown at me were not any easier, but I was much more equipped to handle them than I was the first time.


Ultimately, this disease will eventually cause me to have to stop putting as much load on my body as I am right now. But while the time has not yet come for me to hang up the shoes, I know that when it does I will not only be prepared to enter my next phase of life as a well-rounded person, but I will be able and willing to ask for help with any roadblocks that I am faced with. The Hidden Opponent truly entered my life at the right time and helped me learn so many of the lessons that I just discussed. And while there have been many days where I have just wanted to give up, I know I was given this battle for a reason.


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