As part of The Hidden Opponent’s (THO) Coaches & Professionals (C&P) Program, C&P program staff Erin Drebushenko caught up with Head Campus Captain Amy Schwem, founder of The Autoimmune Athlete, to discuss accessibility in sport, and the role coaches have played in her athletic journey since receiving her autoimmune disease diagnosis.
How did you first hear about THO and when did you first become involved? In what roles have you been involved?
I was a huge fan of Victoria’s and followed her throughout the beginning stages of THO. I really respected her willingness to advocate for mental health in sport and when I learned there was a way for me to be involved in it, I knew right away that I wanted to try and do so. I applied for the Campus Captains program on a whim during the summer going into my freshman year, and was accepted! Coincidentally, that was the same time that I received my autoimmune diagnosis, and at the time I did not realize how big of a role THO was going to play in my life. I spent my freshman and sophomore years as a Campus Captain, and became a Head Campus Captain this year. It is such an honor for me to get to work with this program, especially when it has been so meaningful in my own personal life.
What does athletics mean to you? How long have you been playing sports/your current sport?
Athletics in general is just such a special concept to me. I think what most people outside of the athletics world don’t realize is that it’s not just about the sport and wins and losses, it’s about the people you meet along the way, the experiences you gain, and the person that you become as you navigate challenges and reap success. I was involved in a lot of sports growing up, but volleyball became my one true love around 13 years old. My older sister played, so I was always around the gym and started playing myself around age six. When I was in 7th grade I switched clubs and my passion for the sport just exploded and has only continued to grow. I feel very fortunate that at 21 years old, I still love the sport as much as I do and have not hit any feeling of being burnt out. For me, the gym has always been my escape from anything else I was facing, and that has held true even throughout college.
Tell us a bit more about The Autoimmune Athlete! How did you get started? What has your journey looked like up to this point? Have you faced any challenges?
The Autoimmune Athlete is my own organization that I founded in August of my sophomore year. I was diagnosed with an autoimmune disease the day that I left home for my freshman college preseason, and I was terrified. I was terrified of the unknowns and the challenges that were ahead, but I was even more terrified that people would view me differently— as lesser than, as weak, or as incapable of competing at the Division 1 level, before I even had the chance to prove myself. Because of these fears, I told as few people as possible about my diagnosis, and even the people that did know about it received a sugar coated version that downplayed the entire thing. My athletic trainer didn’t know, my strength coach didn’t know, most of my teammates didn’t know, etc. Eventually, this system failed and failed hard. I started to realize that it was a battle that I could not fight on my own any longer, and I slowly started to let some people in. The response was overwhelming. I was met with so much love, support and genuine care. I slowly started shifting into a space of being more comfortable talking about it with the people in my close circle. One day during a particularly tough period, I was sitting in my coach at the time’s office and he suggested I look for a support group with other athletes facing something similar. We both searched for one together and couldn’t find one… which is how The Autoimmune Athlete was born. My ultimate goal was that no athlete would ever have to go through something like autoimmune disease alone. I wanted to create a community of support that made athletes feel seen, heard, and supported. And it has been simultaneously the most challenging and fulfilling experience I could have ever imagined. It has forced me to be vulnerable, to admit when I am struggling, and to normalize extreme challenges that you face as an athlete with an autoimmune disease. It has also introduced me to so many cool people and allowed me to connect with and guide others who go through the same things I go through. I am so thankful that I made the tough decision to be bold— if it means I have helped just one other person, it was all worth it.
How have you advocated for accessibility in your sport?
The Autoimmune Athlete has been my biggest source of advocacy so far. Sharing my story with other people and spreading the word that it is absolutely possible to thrive in college athletics with autoimmune disease. If anything, having an autoimmune disease has only made me a stronger person. I am currently a captain of my team and I find myself falling back on so many principles that autoimmune disease has taught me when it comes to leading my team: how to advocate for yourself, how to take care of your body and mind, how to speak up when something is not right, and how to lean on the people you trust when you are facing something challenging. There are times when autoimmune disease knocks you down so hard that it feels impossible to get back up, but it’s these exact moments that equip you and prepare you to handle anything you’re faced with on the court or in life. If I can go to battle against my own body, I can certainly go to battle against an opposing team.
How can coaches help with student athlete accessibility and disability support?
Ask questions and educate yourself! A lot of people feel uncomfortable asking questions— like they are being nosy. In reality, you are not going to know how to best support your athletes unless you hear from them what they need. Especially with something like autoimmune disease that is not always visible from the outside, there is no way for you to fully understand what your athlete is going through unless you hear it from them and take the time to research whatever it is they’re facing. Be willing to be the bridge between your athlete and the resources they need access to, and know what those resources are and where to find them. And finally, don’t lower the expectations for someone facing a mental or physical health challenge. Trust that they will communicate with you if there is something they need to adapt or change- don’t assume that there are things that they can’t do. If you are unsure and want to make sure that you are supporting them properly, ask.
Besides coaches, are there other athletic support staff or professionals that have helped you advocate for yourself and accessibility in your sport?
My current athletic trainer Morgan has been my absolute saving grace in navigating the challenges that autoimmune disease, sport, and life have thrown my way. Everyone is quick to say that being a college athlete requires blood, sweat and tears, and they are absolutely correct. But what they don’t talk about enough is the person that is there to clean up the blood, sweat and tears, and pick you up and set you back on your feet. She has seen some of the lowest of lows, and yet has never thought less of me for them or suggested that there is anything that I can’t do. She has been a shoulder to lean on for me, sometimes quite literally, and has been such an anchor of safety and comfort when things get tough. It’s so important for athletes facing autoimmune disease to have a Morgan. Whether it’s an athletic trainer, a coach, a sports psychologist, or another professional on their support staff- it makes such a difference for the life of the athlete.
Is there one coach/professional that has stood out to you as a pioneer in student athlete accessibility?
I have been extremely fortunate to play for collegiate coaches that have always supported my health and well being as a person. I think to be a “pioneer” in student athlete accessibility, it starts with relationships. Do your athletes trust you or someone on your staff enough to tell you about challenges they’re going through? If you do know what they’re facing, have you made the effort to learn anything about it or remind them that you’re there to support them? Facing a physical or mental health challenge can feel extremely scary to talk about, and if your athlete doesn't have that foundation of trust in place, chances are they will be more inclined to keep everything bottled up rather than advocating for themselves when they need help.
Where can coaches and athletes find more information about how to advocate for accessibility in sports?
I would advise coaches and athletes to start with their school and understand what resources are available to them for both mental and physical health. As for The Autoimmune Athlete, I am not a doctor or a health professional of any sort, but my DMs are always open and I will respond to anyone looking for help or guidance on how to best navigate accessibility in sport. I can’t promise I will have answers, but I can promise that whatever an athlete is facing, they won’t have to face it alone because of The Autoimmune Athlete and the community it has created.
