Resources that helped me reclaim my life

In 2018, my journey with ankylosing spondylitis (AS) began with a scary moment out on my normal morning run—I slipped on black ice and slammed my left knee into the pavement. One second, I was upright and turning around to run home, and the next, I was sprawled on the ground, wondering if the universe had just issued me a very aggressive wake-up call. What followed was not just physical pain but over a year of confusion, misdiagnoses, and medical gaslighting that left me feeling lost and alone. No one in my circle had ever heard of AS, and without a proper diagnosis, I felt like I was navigating an endless maze of uncertainty, searching for answers that never seemed to come.

For that next year or so, I was dismissed by doctors who either downplayed my symptoms or told me it was all in my head. (Spoiler alert: It wasn’t.) It wasn’t until I found my current rheumatologist that everything changed. They finally gave my condition a name, allowing me to access the right medications and treatments. The relief of having a diagnosis was overwhelming, but I still felt isolated—until I discovered the Spondylitis Association of America (SAA).

SAA then became my lifeline. Through their resources, I learned how to advocate for myself, find the right treatments, and connect with a community of people who understood exactly what I was going through. And let me tell you—once I found my people, I never looked back. What started as a cautious dip into the SAA world quickly turned into full-fledged community involvement. I’ve now gone on to make lifelong connections, get life-changing advice, and even find people with whom I can laugh at the absurdity at trying to explain AS to people who think it’s just a fancy term for a stiff back.

Because of everything SAA has done for me, I have chosen to donate to them in my will. My hope is that, long after I’m gone, others facing the same struggles will have access to the resources that helped me reclaim my life. I want to contribute to furthering research, expanding patient support, and ensuring that no one else with AS must feel as lost as I once did. SAA gave me community, a new sense of ownership over my health and sense of self, and hope—and I want to pass that hope on to others.