By The Lupus Foundation of America
May is Lupus Awareness Month. Approximately 1.5 million Americans have lupus – a chronic autoimmune disease that can damage any part of the body. Because most people in the United States develop lupus when they are between the ages of 15 and 44, and of working age, it can have a negative economic impact on individuals and the economy. A 2008 study published in Arthritis and Rheumatology found that the average annual total cost (combining direct costs and productivity costs) for people with lupus of employment age was $20,924.
Living with lupus and maintaining full-time employment can be challenging. but that does not necessarily mean people with lupus have to stop working. Since common symptoms of lupus include fatigue and joint pain, they may have to change the way they work. However, many successful professionals living with the disease have found ways to make working with lupus work for them. Several strategies can be learned from their success stories.
Listen to Your Body and Adjust
Kristin Gold is a sports reporter who lives with lupus. Gold’s job of carrying around a heavy camera and interviewing athletes can be physically demanding. She plans ahead when she knows she is going to have a busy day on her feet. “I know I have to eat correctly that morning and throughout the day. I have to budget myself for 12 hours of sleep, minimum, to recover,” says Gold.
Similarly, Olympic gold medalist Shannon Boxx has not let lupus prevent her from participating in any US Women’s National Soccer Team game or practice. That said, she also knows how to read her body and she understands that she needs to rest. “I’ve had days when I’m training on my own and I haven’t been able to get through a training session,“ she says. She recommends that others with lupus pay attention to their bodies. “Learn when flares may be coming so that you can kind of prepare yourself for a bad day,” she advises.
Ask for Help
Other high achieving professionals encourage people with lupus to not be afraid of asking for help. Allison Lung, a nuclear physicist and a teacher, remembers one time when her lupus symptoms stopped her from completing a project on her own. She asked her colleagues and students for help with the project and she learned that there may be unexpected benefits to sharing the load. “Asking for help in the workplace doesn’t have to be a weakness. It actually turned into a great training opportunity for the students and I learned things from the experts. So, when I find myself in a similar situation, I try to remember that lesson,” she says.
Anita Emery is a high school teacher who has also benefited from asking for help. She asked her school for workplace accommodations, or reasonable adjustments, that helped her stay working. To help with fatigue, her school allows her to teach in a chair with a lowered podium. She also gets an hour and thirty minutes for a combined lunch and planning period. This extended break allows her to build up the energy she needs to teach her afternoon classes. “I teach two periods, have almost an hour-and-a-half break, and then three periods,” she explains. “If I didn’t have that, I would not be able to teach.”
People with lupus or other disabilities are not legally required to disclose their disabilities to an employer. However, in order to receive workplace accommodations under the Americans with Disabilities Act, disclosure of disabilities to employers is required. The Lupus Foundation of America provides a list of possible workplace accommodations that covers a wide variety of jobs.
Some people with lupus have found professional success and personal satisfaction by making sure that their jobs emphasize their strengths and not their physical weaknesses. Before she felt the effects of her lupus-related symptom of fatigue, Ann Utterback, an experienced vocal trainer, would travel around the country coaching news anchors and large groups of people about how to look and sound on camera.
Once she was diagnosed with lupus, Utterback knew she would have to stop travelling, but she didn’t want to give up her career. “I started looking at it creatively and thinking, what are the tasks that I enjoy and how can I reinvent what I do in a way that works in partnership with lupus?” she recalls. She decided to start working from home and coaching people over the phone. “That has turned out to be really rewarding and it works really well with groups. Sometimes I do it with Skype, sometimes just the phone, I’m able then to work with clients one-on-one. Right now I have clients all over the country,” she explains.
When Laurah Rodgers, an aesthetician and owner of a cosmetics franchise, got what she called a “horrible butterfly rash,” it inspired her to sell a special skin care product. “People will have very sensitive skin with lupus and come to me,“ she says. “We have a line that… doesn’t have any parabens or sulfates.”
Planning, asking for help, and thinking creatively can help people with lupus succeed and thrive at work.
ABOUT THE LUPUS FOUNDATION OF AMERICA
Through a comprehensive program of research, education and advocacy, the Lupus Foundation of America leads the fight to improve the quality of life for all people affected by lupus. For more information, visit www.lupus.org.