Your Stories: A Diver’s Tale: Resilience and Reinvention in the Face of AxSpA

I started gymnastics when I was about four years old. When I was a kid, I would be climbing all over the place, and my mom wanted me to be in a safe environment while climbing. So I started out with little classes, and quickly I graduated into the team level.  It was very competitive; I was doing Junior Olympics, and I reached level seven [out of ten levels of difficulty]. I did that for about ten years, and I loved it.

But during that time, I suffered from three stress fractures in my back. Each injury took me out of gymnastics for about eight months. It was incredibly difficult. Any injury takes a psychological toll on you, alongside the physical toll. But still, I didn’t want to quit. I had my gymnastics family: my team, my coaches. Gymnastics was such a huge part of my life, and I couldn’t see myself without it.

However, when I got the third stress fracture, during the MRI, the scan went just a little lower than expected, which led the doctor to notice something irregular with my joints. I was referred to a rheumatologist where I had further imaging, and I was diagnosed with

spondyloarthritis. At this point, I was in a lot of pain. I couldn’t sit or stand for long periods of time, which affected my physical activities as well as my schoolwork. My rheumatologist launched me into various treatment plans which included biologic medications that I had to self-inject at home with the help of my parents. I was not in a good place physically. So, at the age of about 12, after being a gymnast for most of my life, I made the tough decision to quit.

It was a really difficult period. I was dealing with the new diagnosis, starting different medications, and adjusting to a life without gymnastics. In addition, since my school ended at sixth grade, I had started the stressful process of applying to new schools. I was going through a lot of different changes in a short period of time. Thankfully, I had the support of my friends, my doctors at Mass General, and my parents.

Still, after quitting gymnastics, I was in a really dark place. I didn’t want to go out. I didn’t want to work out. My mom knew that as an athlete, I needed to do something physical for my mental wellbeing. She found a swim team that accepted me, and I begrudgingly tried it. After two months, I hated it. I got so sick of staring at the black line at the bottom of the pool.

But through swimming, my mom met a parent whose kid did springboard diving. I was super eager to try it because all the flipping and twisting were so similar to gymnastics,

but with less impact since I entered water instead of landing on hard mats. Soon after, I tried out for a diving team based out of Boston. And from the very first practice, something clicked. I felt motivated and excited like I had used to, and I knew I wanted to stick with it and learn everything I could. I was around thirteen or fourteen, and from then on, I was dedicated to springboard diving.

Eventually, I set my sights on college diving. At the end of my sophomore year of high school, I reached out to coaches for D3 schools. Although I loved diving, I wanted to be able to prioritize my academics as well. I fell in love with Carnegie Mellon. I applied, and with the help and support of my parents, my team, and my coaches, I got in.

I’m so grateful to be a varsity athlete at Carnegie Mellon. So far, college is going really well. I’m in my first year. Of course, college feels different from high school, but I’m loving every aspect of it. I love the classes (although they aren’t easy), the campus, the community, and the location of CMU. And I especially love my team.

When I was going through the recruitment process, I was really worried about whether the coaches would see my diagnosis as a liability. As a result, I wasn’t very open at first.  I told them I’d had some injuries, but I didn’t go in depth especially since almost every gymnast gets injured. I somewhat regret that, because now that they know about my diagnosis, my coaches and my teammates have been really supportive. We’re like a little family.

Even so, I know that it’s not easy for people around me to understand the full extent of my autoimmune disease. My closest friends understand that I have a horrible back and do their best to help me when they can, but I don’t know if they know the true extent of it such as the stiffness, the swelling, the aches, and the sharp pains. They might not know how hard it is for me to just get out of bed and get moving, especially in the winter.

Another struggle has been trying to figure out medication. Right now, I take Taltz once a month. When I started college, we were concerned about shipping and about where I could take it on campus safely. I didn’t want to administer or store medication in my dorm room while I have a roommate. Also, my family and I are not part of the university’s insurance plan, so we were concerned about complications with the copay.  So before starting college, I’d spent a couple of months making a lot of phone calls, sending a lot of emails, and figuring out a plan to make sure that my treatment could continue to go smoothly. If I don’t take Taltz on time, I definitely feel it, and it affects my diving and my academic performance. The medication issue has been a big stressor in my first year of college, but so far, everything has gone as planned.

Every part of the process of getting to where I am now has been a great feat. I’ve struggled through the injuries, the mental hardship, the disease, and so many unexpected moments. But I also have so many moments of excitement and pride. I’ve put in twenty-plus hours of training per week for the past fifteen years. I’ve been part of amazing teams with people who have become like family. I’ve gotten to travel across the globe for training and competitions. I’m so appreciative of it all.

My advice to anyone dealing with spondyloarthritis or any disease like this, is that you should use your support system. I’m an only child, but my parents and I are very close.  I’m very grateful for them for being there for me through everything and letting me be open about my pain and my struggles. That’s another bit of advice I would give: be open about your pain, whether you’re an athlete or not. There’s this societal expectation that you should just push pain away—power through it like it’s not a big deal. But I know now that listening to your body is important. Be open and communicate with the people around you, whether it’s your support system or your doctors. If your medication doesn’t seem to be working, or you start having a new, unexpected symptom, say something so  that you can get the help that you need and deserve.

I hope that my story can help someone else who might be going through something similar, especially younger people. We’re supposed to be young and spry, so it can be difficult to deal with these physical struggles that most people don’t think of when they  think of a young person or an athlete. I want to show that it’s okay if life takes you down a path you hadn’t envisioned. Being an athlete and being a student are the biggest parts of my identity, but I’m also someone living with a disability. Ankylosing spondylitis isn’t just a diagnosis. It’s part of who I am.