When I was sixteen years old, I recall my father proclaiming how grateful he was.

“All I could ever want in life is four healthy children.”

His statement was true at the time. My two brothers, sister, and myself were all “healthy.” We competed in sports, excelled in school, and were stepping into a new chapter during the college application process.

Things were going exceptionally well for me. I was accepted into my dream school and was offered an opportunity to compete on the women’s soccer team. It was at a small school in the mountains of North Carolina, a place far away from my hometown in Eastern Pennsylvania.

A large part of my childhood was dedicated to perfecting my skills as a defender. Now, I had the chance of continuing the game I loved on another level.

My first semester at college, I arrived with optimism. The strangers I met on the first day quickly transformed into friends that I could rely on. Each day, we’d have practice. On the weekends, we traveled along the east coast to attend games and tournaments. As a northerner, I’d never gotten the chance to explore the South. Visiting these new places greatly enriched my life. It was an immense joy to play the game I loved with a wonderful group of friends while expanding my experiences in the world.

I first noticed a subtle pain in my hands when I was at the Nationals tournament. My first thought was that it was fatigue from the extensive training I was partaking in. My team had unexpectedly placed in the top ten on the east coast, so we made the trip from Swannanoa, North Carolina to Virginia Beach to compete.

I recall the final day of the tournament. The game took place on an evening in mid-October when the evening chill started to lurk in the air. The sunset turned the sky a bright shade of pink and orange as we soaked up all that we had accomplished. We ended up placing third in the tournament. Although we did not win, these moments are something I’ll always remember.

Pain that was easier to ignore, overshadowed by the intensity of competing, quickly progressed. Within three months, I could barely move my hands from pain and swelling. My red curly hair, which I had been known for my entire life, suddenly fell out, making it difficult to recognize the reflection in the mirror. Overcome by sudden fatigue, completing daily tasks became increasingly difficult. Life felt as if I was wading through water.

I would not fully comprehend what was happening until years later. Prior to my symptoms presenting, I did not know what autoimmune diseases were. Within the next two years, my symptoms would progress. I would eventually be diagnosed with systemic sclerosis.

At a young age, I had not comprehended the weight of the diagnosis. As I grew older, I’ve reflected on the immense shifts that scleroderma produced in my life. Because of chronic pain and deterioration of my physical body, I had to stop playing soccer as an attempt to better manage my well being. What I thought was a temporary interruption, turned into a seven year long journey full of constant treatments, doctors appointments, and learning how to manage autoimmune symptoms. The first shift in my life was adjusting to this new normal.

I pondered for years on the purpose of this struggle. I questioned “Why?” more times than I can count. There were times where anger consumed me. Other times, I felt deep sadness. There was so much I’d wanted to accomplish as I moved into adulthood. Facing an unexpected illness interrupted so many of my plans. These changes shook everything that I’d known about myself: my capabilities, my sense of stability, and my physical self. The feeling of uncertainty of who I was post-diagnosis initially grew exponentially.

A semblance of clarity came in the fifth year of illness. Through the years, getting access to adequate care was incredibly difficult. Endless barriers to care showed up continuously. Whether it was doctors downplaying symptoms or long waitlists for disease specialists, my condition continued to deteriorate for years as I struggled to find a treatment that worked. Having a chronic illness is incredibly frustrating, especially when survival relies on continued self advocacy. Facing autoimmune disease helped me develop skills to push for change for individuals with chronic conditions.

Having scleroderma pushed me to pursue a graduate degree in social work to better equip me to help others in similar situations. Years of illness strengthened me so that I can help strengthen others. A major goal of mine is to equip others with chronic health issues with the necessary physical and emotional resources to face complex medical challenges. My experiences with scleroderma built my self-confidence to fight for what I need. Using these skills, I want to provide similar support to patients in the medical systems as a medical social worker.

As I’m entering my second year of graduate school and refining my skills as a therapist, I had a recent conversation with my father. We reflected on my experiences with illness over the last several years. He told me he’s grateful still, but this time, for something different.

“I’m grateful that you’ve grown into exactly who you needed to be. Despite being dealt some unfavorable cards, you’ve repurposed it into something good.”

A phrase I heard often growing up was “A falta de pan, galletas” … “If you can’t have bread, you’ll have to make do with crackers.” Life did not pan out as I expected. That does not mean I cannot make something out of it. Scleroderma built my strength in a way I never expected. It gave me a voice to speak. It helped me push for change. It laid the foundation for my life goals. Although I hope one day there’s a permanent cure, the journey shaped my sense of identity. Today, I’m an advocate for others because of the struggles endured.