I was 18 and a freshman at the college of my dreams, majoring in theatre in Los Angeles when I was diagnosed with a severe case of mononucleosis. I was so ill; I couldn't finish all my classes. Sophomore year, I determined to make up for lost time and to be myself again, though I suffered from the aftereffects of mono (or so I thought). The more I ignored the fatigue and pain, the worse I felt.
As an actress, my body was my tool, and with that tool broken, I couldn’t keep up with my classmates and my professors’ expectations. I felt embarrassed at how difficult it was to complete even the simplest tasks. Equally embarrassing were my new financial problems associated with chronic illness. I saw specialists at the med school who performed what felt like a million tests, but they couldn’t find any answers. I went to the disability center, and they told me that they couldn’t help unless I had a diagnosis, so I took a medical leave as recommended.
I returned to Saint Louis heartbroken and spent years on what I call “the rollercoaster”. I would push myself way too hard, trying to catch up. Then I would collapse, spend a long time slowly recovering, and promptly take on too much again. Although I enrolled as a full-time student every semester, I thought I might never finish college. I bounced from doctor to doctor, receiving misdiagnoses on the way. I can’t tell you how many medications I tried, with little success.
Finally, 5 years after the onset of symptoms, I got the correct diagnosis of systemic lupus erythematosus and Sjogren’s syndrome. Taking a medicine to treat the disease itself instead of just symptoms was life changing. I worked full-time during the day and was a part-time student at night. I was still on the rollercoaster, keeping up with bosses’ demands and healthy co-workers. I didn’t take proper care of myself with rest, nutrition, exercise, and controlling stress – all vital for people with lupus. Then I took a routine eye exam and found I had vision loss. The medicine I took wasn’t the cause, but it could make my retinal disease progress faster. I stopped taking it, and my doctors again recommended medical leave, first from work, then from school.
Each lupus patient has unique symptoms and the average length of time to diagnosis is 6 years. There are only three medicines specifically developed for lupus, the first in 2011, two more this decade. Medicines cause severe side effects and often a treatment for one problem makes another worse. Keeping track of medicines, appointments, contacting the insurance company, resisting pressure from people who don’t understand, and keeping a sense of humor is a 24/7 job.
It took another 5 years after diagnosis before I found the LFA Heartland Chapter. They provide resources to people with lupus and volunteering with them allows me to use my talents. In 2022 I was chosen for the LFA Heartland Chapter’s inaugural class of Lupus Ambassadors. I raise awareness, mentor others, and lead meetings with Members of Congress and staff to secure federal funding for lupus research. I hope that my friends and family will help End Lupus by donating to my fundraiser!