I was 18 and a freshman at the college of my dreams, majoring in theatre in Los Angeles. In the second semester, I was diagnosed with a severe case of mononucleosis. I was so ill; I couldn’t finish all my classes. Sophomore year, I was determined to make up for lost time, but I was still dealing with the aftereffects of mono, or so I thought. I desperately wanted to be myself again, and hoped that if I ignored it, it would go away. The more I tried to push past the fatigue and pain, the worse I felt.
Eventually, I was referred to specialists at the med school. I had what felt like a million tests done, but they couldn’t find any answers. I spent a lot of time on the bus shuttling between the main campus and the med school campus. When you’re an actor, your body is your tool. If that tool is broken, you can’t keep up with your classmates and your professors’ expectations. I went to the disability center and was told that they couldn’t help me unless I had a diagnosis. I was embarrassed at how difficult it was for me to complete even the simplest tasks like dressing myself or brushing my teeth and hair. I was embarrassed about my new financial problems associated with chronic illness. How could I explain a mysterious, undiagnosed illness?
In the middle of the spring semester my sophomore year, I took a temporary medical leave so that I could focus on getting a diagnosis. By fall, however, I wasn’t any closer to a diagnosis. I was in danger of losing my academic scholarship and my financial aid, and I was heartbroken.
I spent the next four years on what I call “the rollercoaster”. I would do too much, and 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. I enrolled as a full-time student every semester but didn’t make any progress. 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, I got the correct diagnosis of systemic lupus erythematosus and Sjogren’s syndrome. It took 5 years from the onset of symptoms, which is average. I started taking a medicine to treat the disease itself, rather than just symptoms, which was life changing. I worked full-time during the day and was a part-time student at night. I tried again to forget I was sick, and didn’t take proper care of myself with rest, nutrition, exercise, and controlling stress – vital for people with lupus. After about three years, I took a routine eye exam and found I had a loss of central vision. The medicine I was taking hadn’t caused vision loss, but it could make my existing retinal disease progress faster. I stopped taking it immediately, and I can never take it again. I took a medical leave from work, since I was already struggling to do my job, and I needed to stabilize my condition without medicine. Soon, I couldn’t keep up in school either. In the last several years, I haven’t gone six months without a new crisis – whether that’s a new symptom complicating treatment, or insurance refusing to cover something.
My condition is so complex now, often a treatment for one problem makes another one worse. It’s especially difficult getting the insurance companies to cooperate. Taking care of my disease requires constant work and resisting pressure from people who don’t understand.
I am determined to advocate for myself, and not to quit. I’m a trained Lupus Advocate with the Heartland Chapter, so I’m able to mentor others, and raise awareness both in my community and with Members of Congress. I have led multiple district meetings in recent years to secure federal funding for lupus research. I received a scholarship to attend the Lupus Advocacy Summit in Washington, DC in March 2020! Unfortunately, the activities in DC were canceled in favor of a digital Summit this year - the good news is that I still get to participate in the meetings and advocate via conference call. I hope that all my family and friends will support my efforts by donating to this fundraiser!
I’m Walking to End Lupus.
Imagine a day when doctors can say, “There is a cure for lupus.” Until that day though, there is work to be done. That’s why I’m taking action in the fight against lupus. Join me as I participate in Lupus Foundation of America’s Walk to End Lupus Now™ in Saint Louis to raise critical funds for the estimated 1.5 million people living with lupus in the United States.
Will you make a donation to help me reach my personal fundraising goal and support the Foundation's efforts to improve the quality of life for all people affected by lupus? A generous contribution of $25 or $55 can make a definite impact. What’s more, if your employer offers a Matching Gift Program to employees, you may be able to double your contribution with just a little bit of paperwork. Trust me, it’s worth the effort! Every single dollar counts.
Did you know?
- Lupus is a mysterious and misunderstood autoimmune disease. It strikes without warning, affects each person differently, and has no known causes or cure.
- Lupus symptoms can be severe and highly unpredictable and can damage any organ or tissue, from the skin or joints to the heart or kidneys.
- While lupus can strike anyone at any time, 90% of people living with lupus are women. Women of color are at especially high risk.
- Only one drug has ever been developed and approved by the US Food and Drug Administration specifically to treat the disease.
Together, we can solve the cruel mystery of lupus. Thank you for your generosity!