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Living with Lupus

Jill Nicole Kuirsky first developed symptoms of systemic lupus erythematosus (SLE) in 1988 at the age of 11. But it took another three years of fatigue, joint pain, and headaches for the doctors to correctly diagnose the disease. As with approximately a third of people with SLE, Jill also has Antiphospholipid Syndrome (APS), a blood clotting disorder that can sometimes lead to strokes, multiple miscarriages, and other complications. In Jill's case, APS was diagnosed in her senior year of college when a near-fatal blood clot developed in her leg and started to move up to her heart. Now 27 years old and living in New York, the Michigan native has found ways to stay upbeat about the future despite ongoing disease flares. In this interview, she shares some of her coping strategies as well as tales of her journey into adulthood.

You were diagnosed with lupus at an early age. What was that like?

Jill: My pediatrician tried to get me in to see a rheumatologist. But that wasn't easy. At the time it was very difficult to find a doctor who would treat lupus in a child, much less know how to talk to one. Doctors at the University of Michigan eventually helped to get the disease under control. I took powerful anti-inflammatory drugs and began to feel better. But I also got sad at certain times of the year, like the summer when all the girls would be going outside and I had to stay in because the sunlight would cause a disease flare. I couldn't risk being put back on steroids. I hated what they did to my body—mood swings, bloating, weight gain. Those are tough at age 17. I also needed a lot of rest, but I was a kid and wanted to go out and do things.

How has lupus affected your career and ambitions?

Jill: For many years, I was disappointed with school and life, because I couldn't do all the things that everyone else did. Then I realized that I could make peace with myself by frequently adjusting my goals. For example, from the time I was small I wanted to be an actress. When I first moved to New York in my early 20s, I attended the American Academy of Dramatic Arts and also worked part-time as a trading assistant for an investment bank. But working in the arts can be very frustrating and stressful, and the physical demands of hours on my feet on the trading floor took a toll. I had to quit both jobs after just three years. I didn't have the stamina to work long days or more than 30 hours a week. In 2004, once I realized that I had to pace myself, I began my own theatre company: Aim High Productions. It focuses on women's issues. Having my own company allows me to produce shows, ensures that I act regularly, and enables me to raise money and awareness of the need to find a cure for lupus. For steady income I use the cosmetology degree I got in high school for my beauty business, Model Effects. I do spa packages and makeup for events.

What makes you feel better when you are having a hard day?

Jill: Exercise is a great way to deal with the pain, stress, and weight gain (from medications) of lupus. I started running regularly three years ago, and now average 25 miles a week. And to keep things in perspective, I have my cute-all-over miniature dachshund, Sir Edward Albee. He's always there to greet me at the door. That makes a big difference on particularly trying days. But the best medicine of all is my friends and family. Sometimes it's difficult for them to understand my tiredness and pains, but just having caring relationships in which I'm treated like everyone else makes me smile.

What would you say to other children diagnosed with lupus?

Jill: I had to fight my parents to let me do things like go to college. They worried so much. But looking back, attending Central Michigan University was the best thing for me because it made me feel normal, like other kids my own age. So learn as much as you can about the disease but don't forget to live your life. Do all the things you want to, and if you have a passion, follow it. I did. You just need to know when to rest.


Want to share your lupus story? Email lstegmaier@lupusny.org.

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