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MORE THAN A DIAGNOSIS

Share your story series: Defining the future, getting vulnerable, & building a community.

Dealing with a setback is hard enough, finding the support you need shouldn’t be. When you can’t find the community you’re looking for…build it. 


 

MY NAME IS AMY SCHWEM AND THIS MY STORY.

DI Volleyball Player | William and Mary College


I am a junior on the William and Mary volleyball team. I am originally from Chicago, Illinois, studying kinesiology and psychology, and I have an autoimmune disease. 


It was the summer going into my freshman year that I first started experiencing some weird health issues. They had become concerning to the point where they couldn’t be ignored and I knew I needed to seek answers and professional help. I was experiencing chronic issues with joint pain and swelling, fatigue, and headaches. Medical tests were done and on August 4th, 2021, coincidently the day I was leaving home for my first collegiate preseason, the results came back to diagnose me with an autoimmune disease. An autoimmune disease is a condition in which the body's immune system mistakenly attacks its own cells, tissues, and organs, thinking it's a foreign organism, causing inflammation, pain, and damage to the body. I will never forget how it felt to be leaving home for the first time with a new diagnosis that I knew nothing about, in a state that I had no doctor or medical staff in.


As an incoming freshman, I was already eager to prove myself on the court. Now, on top of that I was having to wrap my head around what this diagnosis could mean for me; a total life adjustment in more ways than one. The unknown of what my life would look like now was scary; I didn't know what would change specifically but I knew that things would. Above all, I was scared of how I was going to be perceived by others in my new environment. I had a narrative in my head that I would be written off as weak, less than, and incapable of competing at the Division 1 level—all before I even had the chance to prove myself. Because of these fears, I told as few people as possible about my diagnosis. My athletic trainer didn’t know, my strength coach didn’t know, and most of my teammates didn’t know. 


Eventually and inevitably, this approach failed me. It became very clear that this was a battle that I could not fight on my own. I stepped well outside of my comfort zone and slowly began to share bits and pieces of what I was dealing with with the people around me. The response I was met with was overwhelming. I received an abundance of genuine love, support, and care that I didn’t even know how desperately I needed. Slowly but surely I became comfortable talking about things with my close circle, which was a big step in properly taking care of myself. I had unending support from my coaching staff and family, but there were still so many things that I was having to navigate on my own.


During a particular rough patch, my coach asked me if I had considered joining a support group where I could receive support from other athletes who knew and could understand what I was going through. Together we looked and couldn’t find one that quite hit the mark of what I felt I needed in a support group. This was the birth of The Autoimmune Athlete. The Autoimmune Athlete is my own organization designed to be a support system for any athlete battling autoimmune disease. My hope is that no athlete ever feel like they have to deal with something like this alone. My goal is to make athletes feel seen, heard, and supported, even if it means me being a little bit more vulnerable than I am comfortable with. If the organization has helped just one person, I consider it a success. Starting The Autoimmune Athlete has been one of the most challenging and fulfilling things I have ever done, and I feel so fortunate to be a part of creating a community of such awesome people. Playing a sport at a high level with an autoimmune disease is incredibly challenging, but by creating a support system of other athletes who are going through it too has helped ease the burdens of going through all of the unknowns. 


Living with an autoimmune disease has only made me stronger. I am currently a team captain and find myself falling back on so many principles that having an autoimmune disease has taught me when leading my team. Things like how to be an advocate, how to best take care of my body and mind, how to speak up when something is not right, and how to lean on people that care about me when things get tough. Living with an autoimmune disease presents me with challenges like no other, but it is these challenges that equip me with the skills I need to face anything else life throws my way. If I can go to battle with my own body, I can certainly go to battle against an opposing team. 



If you are an athlete dealing with an autoimmune disease and looking for support and community:

Instagram: @the_autoimmune_athlete

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