When I was 15 years old, most days followed the same schedule: wake up, go to school, a couple hours of soccer practice, a few more hours of karate class, go home, do my homework, and then off to sleep. I was the epitome of “student-athlete” and was having a rather successful competitive year; just that summer, I had traveled to Okinawa, Japan to compete in an international karate tournament, and won second place in full-contact knockdown fighting! Honestly, I was in the best shape of my life.
So when I started experiencing knee pain a few months later, there was no real concern; soccer and karate will do that to a person. But then my knees started REALLY hurting… and my hips, and my ankles, and my shoulders, and my hands. Every joint in my body ached, and I went from running and kicking to practically bed bound. I was also tired… ALL the time. I was sleeping in class, skipping sports practices for naps, and sleeping more throughout the night. On top of all of that, I was having migraines every other day and my mouth was riddled with sores, making eating very unappealing and causing me to lose weight fast. I went from very healthy and active to, well, not.
These symptoms continued building up and worsening over the span of a month, until I finally saw my pediatrician. After listing all my symptoms and drawing some blood for lab tests, I just had to wait. Those three days of waiting seemed like the longest three days of my life. Finally, the doctor asked my family to come in to discuss my results. Right then I knew, it couldn’t be good; you can share good news over the phone, but bad news is always given face-to-face. I remember how silent the drive to the doctor’s office was and how sure I was that I had cancer or something.
We sat down in the exam room and my doctor told me that my results pointed to two potential diagnoses: leukemia or lupus. All I knew was that leukemia is bad and lupus was… well I had never heard of that before, so I had no idea. My doctor drew some more blood to send to specialists for a second opinion, and again, we just had to wait. So, in those days of waiting, I filled my time with research. I tried to learn everything I could about leukemia and lupus: what treatment looked like, disease prognosis, and potentially my remaining life expectancy.
On Tuesday, October 17th, 2017, I finally received a diagnosis.
Systemic Lupus Erythematosus: an incurable autoimmune disease that causes my immune system to attack the healthy tissues in my body. This is what was causing all my pain and fatigue, and after some more testing, we found out it was attacking my kidneys as well. While this disease has no cure, it could be managed with a concoction of various medications, so I started treatment as soon as I could, and have been taking handfuls of pills every day since.
I thought that a diagnosis and treatment would give me relief, or even hope. But all I remember is feeling helpless.
I thought that my life had been ripped away from me; I was only 15 years old and this news was going to change the rest of my life. I was an athlete with an autoimmune disease that caused severe joint pain; the one thing I loved was now just out of reach. There was nothing I could have done to prevent myself from having lupus, and there was nothing I could do to make it go away. I could take my medication and go to my appointments, but there was no guarantee that it would make anything better. The next few months blurred together as I just moved through the motions, still processing that this was my new life.
I hate to think that having lupus gives me a purpose, because I know that I could live a meaningful life without it, and I would jump at the opportunity to experience that. However, I hated the feeling of hopelessness, so I decided to give my lupus a purpose.
Near the end of 2017, my rheumatologist asked me if I wanted to join her at an advocacy opportunity: the Lupus Foundation of America’s National Lupus Advocacy Summit in Washington D.C. Here, we would meet with members of Congress to advocate for federal funding toward research, and policies to improve the lives of people with lupus. I don’t know why she thought I was qualified to do that, but she assured me that all I had to do was share my story, to tell them about my experiences living with lupus and how my diagnosis and treatment affected my life.
After much convincing from her and my family, I agreed to give it a try, and in February 2018, I attended my first summit. This was my first time talking to other people with lupus, really sharing my story, and seeing that I could make change. I felt seen, understood, and empowered.
I continued doing more patient advocacy work by attending more Lupus Foundation of America summits and fundraisers, working with the Childhood Arthritis and Rheumatology Research Alliance, attending research conferences alongside physicians and researchers, and participating in research studies. More projects, more opportunities, and more connections eventually led me to the Young Patients’ Autoimmune Research and Empowerment Alliance.
I joined Young Patients’ AREA in its very early stages. My only goal at that time was to help make information about healthcare and research accessible and exciting for young patients, and I instantly knew that Young Patients’ AREA was a group I could do that with. I have been so fulfilled by what we’ve been able to do over these last few years. I remember being a newly diagnosed patient who didn’t know how to navigate the healthcare system or research surrounding my disease. I remember feeling like my experiences were not being acknowledged and that doctors and researchers didn’t understand me. I remember how empowered I felt once I learned how to advocate for myself within healthcare and research, and saw that my voice was being heard. And I am so glad that I can now provide knowledge, encouragement, and a voice to others.
If you had told 15-year-old me that I would have a degree in communication studies and public health, working with multiple health organizations as a patient advocate, traveling to research conferences around the country, and writing blog posts to inspire other young patients to get involved… I would probably laugh in your face. But here I am. And I wouldn’t want to be doing anything else.
