My Journey - Lindsey Monroe

I was three years old when I started gymnastics. It was a sport I loved and gave me my competitive edge. Fast-forward 11 years later… I was still a competitive gymnast for my high school team but something was different. I was getting hurt more often, taking longer to recover, and my energy level was at an all-time low.

It wasn’t long after that I became very ill and ended up at Riley Hospital for Children. A blood test showed signs of an autoimmune disease. It wasn’t a quick lupus diagnosis, but at least I was able to start medications that made me feel more like myself. These weren’t simply over-the-counter drugs though… they were chemotherapy and high doses of steroids. I battled all kinds of illnesses while trying to get what would be my “lupus” symptoms under control over the next several years. The worst was a multi-week stay at Riley to treat histoplasmosis, a lung infection most people with healthy immune systems can fight of naturally with no symptoms at all.

Eventually my lupus went into remission with flare-ups becoming few and far between. Now as a 30-year-old and someone still under the average age someone gets diagnosed with lupus, I am on a strict medication regime and under the careful watch of a rheumatologist. While I’ve always had a strong support system with my family, it is hard for them to understand sometimes since I am the first person in my immediate family to be diagnosed. It is bizarre since lupus is often hereditary. That’s why I turned to the Lupus Foundation of America… to find a “family” of others who deal with lupus and their caregivers.

Until this year, I was taking a drug that had been used to treat lupus for decades. I wasn’t even aware there had been new approvals for treatments that were less toxic to the body than the chemotherapy I had been taking for over 15 years. I’ve learned so much by hearing the stories of my fellow lupus survivors. What they’ve been through, what works, what doesn’t. Having the platform to share my story and help fund raise for others going through what I went through… and most of the time on a far worse scale.

I am grateful for the Lupus Foundation of America, especially my home team in Central Indiana. Bringing awareness to a disease that effects 1.5 million Americans is a big part of what the organization does, but on a smaller scale, brings together people who really need a support team."

Read/save Lindsey's journey as the PDF that was sent to our Congress representatives.