I was diagnosed with scleroderma around 1991, but the journey began long before that. I experienced symptoms during my adolescence, such as digestive issues that I later realized were early signs pointing to my eventual diagnosis.

Initially, when I went to my family doctor, it was because I noticed something unusual happening while I was in school. As I wrote, my fingers would suddenly feel strange—like the tingling sensation you get when your leg falls asleep. After undergoing some tests, the doctors suggested it might be lupus, prompting a referral to a rheumatologist. Upon examining my fingers, the rheumatologist quickly diagnosed me with scleroderma. Further tests confirmed I had Scleroderma Crest and Raynaud’s phenomenon. That moment marked the true beginning of my journey with this disease.

In those early days, I felt overwhelmed and scared, but I knew I had to adapt to my new reality. I soon learned to make the best of my situation, even as I faced significant challenges. One of the hardest parts of living with scleroderma has been helping people understand that, despite the lack of visible symptoms, I am still affected by the condition every day. Scleroderma presents uniquely for everyone; while some may appear fine outwardly, we may be struggling internally.

It’s important for others to know that scleroderma is a terrible disease with experiences that vary widely from person to person. For some, like me, it hasn’t stopped me from pursuing what I want in life, while for others, the impact can be far more debilitating. It’s a journey filled with good days and bad days, where the fluctuations can be surprising.

I really wish there was more awareness about autoimmune diseases. Greater understanding could make a significant difference for those of us living with these conditions.