I was diagnosed with lupus when I was just 16 years old. I was a senior in high school at the time - and had been struggling with symptoms since I was a freshman. At the start of lupus’ manifestation, within just two weeks, my thirteen-year-old, 128-pound, four-sport varsity athlete body had plummeted to a weak, 101-pound ghost of who I had once been.
Before lupus wreaked havoc on my life, I was a competitive horseback rider who had qualified several times for a dressage festival run by olympian, Lendon Gray. I played tennis and field hockey and ran indoor and outdoor track. If there was one thing anyone would say about me, it was that I was always moving. That was not the case anymore - at least, not in the same way. My ‘moving’ switched from ‘court to track to barn’ to ‘waiting room to waiting room.’ Some days, it felt like I spent more time in and out of doctor’s offices than I did in my own home.
If you look up ‘medical lab rat’ in the dictionary, you should find a picture of me. My body has gone through just about every test you could think of - probably hundreds of vials of blood taken at this point, CT scans, MRIs, X-rays, EKGs, EEGs, ultrasounds, cortisol tests, gastric emptying tests, tilt table tests. I take more pills and supplements throughout the day than I can count on my hands and feet. Adding to those is a weekly chemo-derivative injection, joint injections, liquid infusions, and spine procedures.
My official diagnoses now read off as systemic lupus, ehlers danlos syndrome, dysautonomia, neurogenic orthostatic hypotension, raynaud’s, rheumatoid arthritis, and liden factor v. To summarize, my body is attacking itself, my nervous system cannot communicate with the rest of my body, and my somatic systems just do not function the way they are wired to. I am in constant, debilitating pain, cannot keep on weight, work through enervating brain fog, have incessant nausea, endure fainting spells, and - in short - do not function like the normal, healthy, 20-year-old athlete people see on the outside. I have not had a pain-free day in over four years. When lupus begins attacking specific organs, they will fail.
It is easy to throw yourself a pity party in situations like mine - but the ‘why me’s’ and ‘I don’t deserve this’’ won’t get anybody anywhere except thrown into a dark hole of despair. I found myself in that depression hole quite quickly, but I knew that I could not stay there. To combat my disease, I found comfort in running. I am not supposed to be able to be an athlete, so every run that I go on is one run that I take back from the diseases that will eventually take everything from me. Frankly, there are days when running SUCKS, but this pain is a pain that I welcome, because it is there because I chose for it to be. I chose to go on a run, I did not choose to be ill. One day I may be able to run seven miles, the next only three. The only predictable thing about lupus is its unpredictability. There are days when I cannot do everything that my teammates can, but what I can do, I put 110% of my heart into.
I am not a good runner at all. You will normally find me at the back of the pack, throwing up at the finish line, needing to be covered in ice so my body can cool down without me fainting. But this is okay! I do not need to be fast to be strong! Strong and fast are not mutually exclusive.
Track is a numbers game - and looking at numbers, a four-minute mile is just as far as a ten-minute mile. This is a lesson everyone could afford to learn. Sometimes even I forget. I won’t race the way I want to and I will beat myself up, but just because I look healthy does not mean that I am - and I am fighting different battles than most. A war does not need to be visible to be valid! We are all working through things that cannot be seen on surface level. The best lesson I’ve learned is to be proud of myself for the battles people cannot see me fight.
It is kind of weird to know how you are going to die at such a young age, but I believe that in order to work through tragedy, we must give it meaning. High school was hard. I went undiagnosed for so long that rumors and harsh words made me begin to question whether or not it was all in my head. When I got to college, I found my people and my voice - and began to give my hardships meaning. My freshman year at Le Moyne, I wrote a sideline story for the NE-10 Conference which went on to be shared by the NCAA. I shared my story on social media, with an ‘A Day in the Life of a Chronically Ill Athlete’ video I made reaching 287.8 thousand people. I was also able to share my story at the NCAA SALT in the summer of 2021. Also during my freshman year, I founded the Le Moyne College Chronic Illness Awareness Club. Through these platforms, I have been able to connect with individuals who felt the way I did - alone, isolated, and confused. Through making connections by sharing my story, I have been able to counsel others and be the person that I wish that I had when I was younger. This is the reason that I give my tragedy. If I was not ill, I would not be able to help others in the way that only someone who suffers from a chronic illness can understand.
Running has afforded me something that nothing else has. Not only has it given me a way to fight back, but it has also given me a platform. The connections I have made are what help get me through - and even when I feel terrible, I know that every time I lace up my shoes, that is one run that lupus cannot take from me - and every spoonie I meet is one person that will no longer feel as alone. There will come a day when lupus will take away my ability to run, but it will never take away the impacts my runs have had on me and others. Even when lupus eventually wins the war, I know that I will have won more of the battles - and for that I am grateful.