My Journey with Lupus

In early 2005, I was 28 years old and just beginning to break into a career as an opera singer. I had received contracts for three main stage productions, a culmination of ten years of work toward my goal of making opera my life’s work. I was at a turning point; these performances could make or break my budding career.

One morning in March of that year, I woke, stood up, and passed out, falling to the floor. I had a fever of 104 degrees, a sinus infection, double ear infections, a bladder infection, a kidney infection and thrush. Two days later, I was struck by keratoconjunctivitis, an eye infection. I was placed on a heavy regimen of antibiotics and was given muscle relaxants for back pain caused by the kidney infection. I could do nothing but sleep for two weeks while I recovered.

A month later, the infections returned. It was clear that in the face of these multiple, overwhelming infections that my ability to fulfill my opera contracts was in doubt. With a heavy heart and in deep disappointment, I cancelled them. I simply couldn’t be sure that I could get up every day to rehearse and perform in full health.

Thus began my two-year odyssey in search of answer to my prolonged and frequent infections. It started in Oregon, where I saw four primary care physicians who could not determine what was making me ill, who told me I was being dramatic and was unable to handle pain, and who told me that I would have to wait for my infections to go away, to pick up my life and move on. Luckily, a friend in California could get me in front of a specialist at UCLA. There, I ended up seeing nine department heads before I was finally referred to a rheumatologist. This doctor performed a DNA screen that revealed a genetic mutation that, coupled with my symptoms, revealed that I had lupus.

At last, I knew what to call this disease that had suddenly and irrevocably changed my life. I learned that lupus is most often a disease that strikes young women, and most frequently women of color. I found out that I was more likely to contract lupus than leukemia, MS, cystic fibrosis, and muscular dystrophy combined.

What became apparent upon diagnosis, however, is that while I have a name for it, I and so many others like me have no answers for what to do about our disease. We don’t know how we got lupus, how to treat it, or even how to manage it. The course of the disease is different for everyone, so when someone with lupus gets up in the morning, they have no way of knowing what might come their way in the course of the next day, week, or month.

In many ways, I have been fortunate. I have an amazing support group of family and friends who have stood by me through this ordeal. I am also lucky to have had an early diagnosis. Too many people with lupus receive a diagnosis after infections lead to organ failure; some find out only days before they die from the complications of their infections. I now know what the warning signs of a flare are, and I have adapted my life to accommodate this disease.

It took me a year to recover from my initial infections and to adjust to the loss of the career I had dreamed of for so long. But now, I understand that my calling is to educate people about lupus and to make more people aware of what it is and how it changes lives forever. I will also work to spur the medical community to recognize lupus and its symptoms and to put more time and resources into reaching early diagnoses and into ultimately finding a cure.

Thank you for taking the time to read my story. It is my firm belief that if you take something that has negatively affected your life and turn it around into something positive, it hasn’t beaten you.

I’m ready to stand with friends and family to stare this thing down. Will you join us in our fight against lupus?

Molly Signature