MY LUPUS STORY| Nicole H.
Navigating Life as a Student-Athlete with Lupus: My Journey of Resilience
Living with lupus as a student-athlete has profoundly shaped my life, pushing me to discover new depths of resilience and adaptability. Halfway through my third year at the University of Ottawa, I am balancing the demands of academia with the challenges of being a varsity volleyball player. But the journey has been far from easy. Lupus has introduced countless hurdles into my life, and learning how to work through them while pursuing my dreams has been my greatest challenge yet.
I was diagnosed with lupus in 2021 at age 16. Leading up to my diagnosis, I was confronted with a variety of symptoms—recurrent pericarditis, fatigue, joint pain, extreme fevers, and kidney issues—that often left me hospitalized and forced to navigate a constantly changing medication regimen. My family doctor told me to quit volleyball, suggesting the strain would be too much for my body and heart to handle. This was the most devastating thing my 16-year-old self had ever heard. But I wasn’t ready to give up. My passion and dreams for the sport were too strong. Today, with the guidance of my rheumatologist, athletic therapist, and sports med doctor, we have crafted a plan that allows me to continue playing while managing my lupus.
The toughest moment in this journey was this past year when it felt like lupus was taking control. I lost 30 pounds in just two months due to medication side effects, leading me to switch to weekly methotrexate injections in April 2024. Along with the new treatment came extreme exhaustion and weakness, sidelining me from practice for days. Despite these challenges, I never lost sight of my goals. There were nights I lay awake, my body aching, wondering if I would ever feel strong again. Those moments of doubt were the hardest to overcome, but each time, I found a new source of strength within me.
Volleyball became my way of proving that I’m stronger than the pain—a constant reminder of my resilience.
The stress of university life, especially during exams, exacerbates my lupus symptoms, triggering flare-ups and inflammation. As a student-athlete, stress is an unavoidable part of training, competition, and balancing academics. I’ve had to learn how to manage that stress and listen to my body. Each semester brings a new set of challenges, and each flare-up reminds me that my health needs constant care and attention.
For a long time, I saw lupus as a shortcoming, especially as an athlete. I used to push myself to the limit, even after my diagnosis, thinking that resting was a sign of weakness. Lupus has taught me the opposite—that strength lies in listening to my body and giving it the care it needs. Rest is now a part of my routine, not a fallback. It’s made me a better athlete and a more balanced person. I thought admitting my struggles with lupus would make me seem fragile, so I felt I had to handle it alone, staying quiet and only speaking up when things had already gone too far. But as I’ve grown, I’ve come to realize that lupus doesn’t define me. I am more than my diagnosis. I am a student, a varsity athlete, and an advocate for others living with chronic illnesses. Letting people in on my struggle has been a powerful turning point, teaching me the importance of not staying silent. The rollercoaster of constantly changing medications has been exhausting, but I’ve learned that every new treatment is another opportunity to manage my condition and keep moving forward. Lupus being part of my life has given me the strength to speak up, to fight harder, and to inspire others to do the same.
What keeps me going through all of this? It’s my incredible support system. My doctors, athletic therapists, and coaches have been more than just professionals; they have become my pillars of strength. Their unwavering belief in me and their guidance has been instrumental in helping me stay on track, reminding me that I am never alone in this fight. Each time I feel overwhelmed, they lift me up, showing me that vulnerability is not a burden but a testament to my strength. But it’s not just them. My family and teammates are my driving force. They encourage me to keep striving, even when the odds seem unbeatable. Their love and support fuel my determination, reminding me that every setback is just a step on the path to my dreams. Knowing I have such an amazing team behind me gives me the courage to face each challenge head-on.
Looking ahead, I dream of not only continuing my volleyball career but also advocating for other athletes with lupus, creating a community where no one feels alone in their battle. I hope that through sharing my journey, I can inspire others living with lupus to pursue their dreams and never let their condition define them. It’s not easy, but with determination, self-care, and the right support, anything is possible. Lupus may be a part of my life, but it doesn’t control it. I am determined to continue pushing boundaries both on and off the court—and that’s how I choose to write my own story.