Work With Lupus: Succeeding despite pain and fatigue
By Lisa Tillman
It doesn’t matter if you’re a high school teacher, a nuclear physicist, or a professional soccer player: If you’re living with lupus, it takes something extra to succeed at work while managing your symptoms. Read on to find out how Olympic gold medalist Shannon Boxx and others with lupus learned to thrive in their careers.
“I think if people can see that I’m playing through all of these things, it gives hope that you can stay active.”—Shannon Boxx
Shannon Boxx has a lot of goals. Literally.
As a professional soccer player, the 34-year-old Californian has scored plenty of them. She is a two-time Olympic gold medalist, a three-time member of the U.S. Women’s World Cup team, and has played for the past three years for the Women’s Professional Soccer League.
In 1995, Boxx helped Notre Dame win its first-ever NCAA women’s soccer title.
The much-feared midfielder will no doubt achieve more goals in 2012, but for Boxx, two will stand out—being a part of her third Olympic team, and raising lupus awareness.
The world-class athlete was diagnosed with lupus in 2007.
“My coaches know about my disease, but I don’t know if they understand the extent of how it affects me,” says Boxx, who experiences both joint pain and fatigue.
Boxx recently decided to publicly discuss her lupus. She’s considering retiring in 2013 and wants to help promote lupus awareness.
“I have an opportunity that I felt was more important than keeping it a secret,” she says. “I think if people can see that I’m playing through all of these things, it gives hope that you can stay active.”
Boxx didn’t keep her lupus diagnosis from her teammates, and she is proud that she’s never missed a U.S. National team game or practice due to her illness.
“I have learned to push through and gut it out,” she says. “I’ve had days when I’m training on my own and I haven’t been able to get through a training session.” When that happens, she stops her workout, goes home to rest, and then tries again the next day.
Boxx listens to her body, and she encourages other people living with lupus to do the same.
“Learn when flares may be coming, so that you can kind of prepare yourself for a bad day,” she advises.
During her rare downtime, Boxx enjoys reading and spending time with her family and friends. And she has big plans for her life after soccer.
“I want to be a motivational speaker. I want to talk about overcoming obstacles, my journey, and how I made it to where I am today,” in addition to starting a soccer-training academy, she says. “Most importantly, I want to continue to promote awareness about lupus, so that we can find a cure.”
“People everywhere are wearing purple, [and] several customers came in just to buy purple eye shadow to show their support.”—Laurah Rodgers
Laurah Rodgers of Orange, TX, is helping to make the world a more beautiful place. The 27-year-old owns a Merle Norman Cosmetics franchise, which offers makeovers and sells cosmetics and skin care products. “I’m also an aesthetician, so I provide professional skin care treatments,” she says.
Diagnosed with lupus six years ago, Rodgers didn’t let frequent oral ulcers, joint pain, and fatigue stop her from doing the work she loves. “My job is kind of my baby,” she says. “My customers are my best friends.”
Rodgers finds it satisfying to help customers with lupus-related skin problems feel better about themselves. “People will have very sensitive skin with lupus and come to me because they know I had a horrible butterfly rash,” she says. “We have a line that is formulated for very sensitive skin that doesn’t have any parabens or sulfates.”
In January, Rodgers suffered a stroke that left her partially paralyzed. Since then, her staff and customers have rallied around her. “It’s been amazing, the amount of lupus awareness it’s raised in my town,” says Rodgers, who regained her speech after the stroke. “People everywhere are wearing purple, [and] several customers came in just to buy purple eye shadow to show their support.”
Although she is currently homebound, Rodgers hasn’t let her physical limitations keep her from selling products online. She is eager to return to her store, though. “It’s emotionally gratifying for me,” Rodgers says. “You get to change the way women feel about themselves every day.”
“I’ll feel good when I go to work. It’s the next day when I feel like I’ve been run over by a truck.”—Adam Olbur
Lupus doesn’t slow down Adam Olbur, 32, who was diagnosed at age 15. The Chicago native held three jobs until recently—as a project manager for a software company during the week, a bartender for a caterer on weekends, and a fan services representative and booth captain at the Chicago Bears’ customer service booth at Soldier Field during football season.
Project management is Olbur’s day job. He bartends to make extra money, but took the customer service job to get his foot in the door with the Bears. “I always wanted to work in sports,” he says.
Fatigue is sometimes an issue with his project management work, so he occasionally works from home. And Raynaud’s phenomenon, which constricts the blood vessels, can make it tough for Olbur to endure the brutal cold during winter Bears games.
But bartending is the job that most exacerbates Olbur’s lupus, with swelling in his back, feet, knees, and hands. “It’s because I’ve been on my feet for eight to 10 hours, [and] I’ve been carrying boxes full of liquor that weigh 25 to 50 pounds.”
Olbur recently decided to slow his hectic work schedule by giving up his job with the Bears because he and his wife, Elaine, are taking on a new job: parenthood.
“I feel really lucky to be able to experience this because when I was 15, the doctors wanted to give me Cytoxan®, which is a chemotherapy drug that might have caused sterility,” he says. “My nephrologist did everything in his power to ensure that I would not need that drug, and I have him to thank today. I am overjoyed that the little one has finally arrived!”
“Asking for help in the workplace doesn’t have to be a weakness.”
Allison Lung, 53, of Newport News, VA, believes the coolest thing about being an experimental nuclear physicist is that you’re constantly learning. “Every question you can pose, you’re guaranteed that even if you answer it, that journey will have generated two or three more questions.”
Diagnosed with lupus more than 20 years ago, the single mom works at the U.S. Department of Energy’s Jefferson Lab in Newport News, VA. She’s the deputy project manager for a 10-year, $310 million upgrade to the lab’s electron accelerator and the addition of a new experimental hall.
Lupus-related fatigue, joint pain, and inflammation can make Lung’s job more difficult, but experience has taught her to ask for help.
Once, Lung faced a long day installing heavy equipment for an experiment on a tight schedule. She woke up that morning knowing she would have a tough time moving around. But as one of the few women working in her field, she felt she’d look weak if she asked for help.
Still, she ultimately decided to seek assistance. “I took the lunch break to put together a small crew—a couple of experts and students—and laid out what needed to be done,” she explains. “We worked as a team, instead of me trying to be really tough, and we got it all done.”
Lung never mentioned her lupus that day, but she learned an important lesson. “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.
“I just wasn’t used to not working, so I signed up for doing the treats for my son’s class. With all that nervous energy, my treats turned into these.”—Amy Eilert
Amy Eilert, 38, of Wake Forest, NC, owns Cupcake Envy, an online bakery specializing in sculpted miniature cakes that she calls “cakelets.” A former middle school choir teacher diagnosed with lupus at age 9, Eilert started the business in 2006, after she decided to stay home with her two children.
“I just wasn’t used to not working, so I signed myself up for doing the treats for my son’s class,” she says. “With all that nervous energy, my treats turned into these.”
Cupcake Envy has been featured in Brides magazine and on the TV shows Food Network Challenge and Ugly Betty. Eilert also teaches cakelet classes in the U.S. and Canada, and she recently signed a deal to write a Cupcake Envy book.
But sculpting cakelets and teaching classes requires her to spend lot of time on her feet. So she tries to adjust her working style to minimize lupus symptoms.
“I do the best I can to work sitting down, but there are times where I have to just stand,” she says, recalling the Food Network Challenge episode two years ago that involved eight hours of being on her feet. “Sometimes the pain is worth it,” she explains.
Eilert advises other people trying to juggle lupus with a business to figure out how to get their work done without compromising health.
“Understanding what your limitations are, and not being afraid to ask for help when you need it, you can still accomplish your goals,” she says.
“I’ve had students say that knowing what I’ve been going through and still teaching has impressed them and made a difference in their lives.”—Anita Emery
Anita Emery, 57, knows the art of adapting. She did it as a child when she moved with her parents to the U.S. from Germany, and again at age 40 when she returned to college to become a teacher.
Four years later, when the Granite Falls, WA, high school German and English as a Second Language (ESL) teacher found out she had lupus, she adapted once again.
Emery loves teaching and didn’t want to stop, but she needed to find a way to balance her constant fatigue and joint pain with her demanding job.
Luckily, Emery’s school was willing to help. “They provided me an extra chair that I could sit in while teaching, a podium that was more at my height, so that I wouldn’t have to raise my arms up so high, and allowed me to have an extra heater in my room,” she says.
Emery was also excused from assemblies because of her compromised immune system, and she got a part-time assistant. But the most important accommodation, she says, was connecting her planning period to her lunch break.
“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.”
Each school year, Emery tells her students about her illness, and the response has been wonderful. Students understand when she has a tiring day, and some have even participated in the local Lupus Walk on her behalf, she says.
“I’ve had students say that knowing what I’ve been going through and still teaching has impressed them and made a difference in their lives.”
“I know I have to eat correctly that morning and throughout the day, and that I have to budget myself for 12 hours of sleep, minimum, to recover.”—Kristin Gold
Kristin Gold, 26, has wanted to be a journalist since she was 13. And she’s accomplished her goal: She’s now a sports reporter and weekend sports anchor in Columbus, GA.
A former competitive swimmer, Gold found out she had lupus at age 17. “Right now, there’s a lot of pleuritis, fatigue, and arthritis,” she says. A few years ago, she was diagnosed with lupus nephritis, which is now under control, she says.
Long days covering high school and college football and baseball are routine for Gold. “In the field, I am camera, reporter, everything,” she explains. “I will shoot my own postgame, edit it, send it back to the station—I do it all myself.”
The keys to living with lupus while maintaining her busy professional life are sleep, sunscreen, and eating right, she says. When she knows she will face a grueling day lugging a 40-pound camera around for hours in the hot Georgia sun, she plans ahead.
“I know I have to eat correctly that morning and throughout the day, and that I have to budget myself for 12 hours of sleep, minimum, to recover,” she says.
Eating correctly means plenty of water and healthy snacks such as grapes, carrots, and cheese. Her advice for others trying to balance a busy job and lupus symptoms is simple: “Take control of what you can control.”
“I want to raise awareness of all the illnesses that people wouldn’t necessarily know about.”—Orla Russell-Conway
A native of Dublin, Ireland, Orla Russell-Conway has always loved movies. In college she decided she wanted to be a cinematographer, the person who directs the lighting and the camera work for films.
After graduation in 2003, Orla was hired as a film trainee, the bottom rung on the Irish film industry’s ladder. She’d been at work barely a month when she was diagnosed with lupus. Three weeks later, she suffered a stroke.
“I was completely paralyzed on one side; I was in a physical therapy hospital for seven months while I learned to walk and use my arm again.”
After she recovered, Orla wanted to resume her job as a trainee, but couldn’t. “This sounds really stupid but because I had a stroke and I couldn’t carry two cups of coffee at the same time I was useless as an assistant.”
Orla realized that her lupus-related fatigue and joint pain, along with the weekly blood tests, would make it impossible for her to work the long days carrying heavy equipment that entry level film jobs required. She knew she wouldn’t be able to become a cinematographer the conventional way, so she came up with another plan.
“The only way I was going to be able to do what I always wanted to was to leap forward a few steps by getting my own equipment and making the films myself.”
In 2008, Orla was awarded a grant from Ireland’s Arts and Disability Forum. She’d requested funds to purchase camera equipment. She wanted to produce her friend, Fergal Rock’s, script ‘Henry and Sunny.’ “It’s about a society where clowns become the marginalized race. I’ve always loved it, because I always felt a bit like one of the clowns.”
The grant allowed Orla to by-pass the difficulties of the industry system, and work directly as a cinematographer. “I can take a less physical role in the production. This way, I still have all the creative input I want, but I delegate the physical work to a camera crew of my own.”
“Henry and Sunny” was well received, and was shown in film festivals around the world. The short film garnered several awards, including one for Orla’s cinematography. “That,” Orla says, “was amazing.”
Still, Orla found it difficult to be living with lupus symptoms like fatigue, while also managing a busy shooting schedule. “I forced myself to stay in bed on the days off.” She advises other people who want to balance their lupus with demanding jobs to prioritize their goals and stick to them.
This year, Orla was awarded a second grant from the Arts and Disability Forum. She’s used it to purchase new equipment to shoot a documentary she’s producing about invisible diseases, including lupus, migraines, multiple sclerosis, and brain injuries. It’s tentatively titled, “But You Don’t Look Sick.”
“I want to raise awareness of all the illnesses that people wouldn’t necessarily know about,” she explains. “I thought if I made a documentary then it would explain the issue to people so there might be a greater general understanding.”
“I figured out a way to write without facing anyone else’s deadlines and it’s really proven to be very successful.”— Ann Utterback
Ann Utterback, Ph.D. loves her work as a broadcast voice specialist. In 1985 she started working with news professionals to help them improve the quality of their voice, their conversational delivery, and their appearance on air. “I’m so passionate about what I do. I just love working with voice.”
For 15 years, Ann traveled the world giving workshops, sometimes to hundreds of people at a time. She wrote books and articles, and worked one-on-one with major broadcast personalities.
Then around 2000, she started feeling constant fatigue.
“I couldn’t get through even a 30-minute workshop. The energy was just not there.”
Doctors told Ann she had hypothyroidism, but medication failed to relieve the fatigue. It would take almost five years before she was diagnosed with lupus.
“I thought there was no hope, I was just going to have to quit everything and be sick, but then 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?”
Ann gave up the workshops and travel, and began offering telephone consultations from her Maryland home.
“That’s 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 and I do it all by phone.”
Ann, who has published eight books, has also continued writing. “I decided to do a blog. I figured out a way to write without facing anyone else’s deadlines and it’s really proven to be very successful.”
Now 65, she’s thrilled she found a balance between the work that she loves and her lupus. “My career has been beyond my wildest dreams successful. Everybody should have, towards retirement age, that kind of satisfaction, because I feel like my job just couldn’t have been better.”
REDEFINING ROLE MODEL
“I am definitely leaving my mark, and there’s never a dull moment with teenagers!”—Marrian James
Master Sergeant Marrian James, 43, was diagnosed with lupus in 2005. At the time, she was the Supervisor of Cargo Processing at the Charleston Air Force Base in Charleston, SC, tasked with making sure all the cargo headed to U.S. troops in Iraq and Afghanistan was air-worthy.
Transporting supplies to the troops was an important job, and Marrian was determined not to let her lupus symptoms— which included fatigue, muscle cramps, and headaches—stop her. “You take the bull by the horns and press on. We were in the middle of the Iraqi war so we were working a lot of long hours; dealing with that fatigue was really a challenge for me.”
In order to relieve the stress of the long hours and her lupus symptoms, Marrian refereed high school basketball. “That’s my passion,” she explains. “Lupus-wise having that outlet, it helps me remain physically active. The exercise is important because it keeps me loose, and keeps my muscles from cramping.”
Marrian successfully balanced her lupus symptoms and her job, and later became Flight Chief for Passenger Service, responsible for transporting U.S. troops.
During her military career Marrian had been stationed all over the United States, as well as Guam and Korea. Last year she retired from the Air Force after 22 years of service and she’s decided to call Charleston home, but just because she’s retired doesn’t mean she’s taking it slow. She’s active with the Lupus Listening Learning Group of Charleston, along with several military associations.
Marrian still “refs” basketball whenever she can, but she’s also embarked on a new career: teaching Junior ROTC at a local high school. “I still put on the uniform every day. I enjoy it. I am definitely leaving my mark, and there’s never a dull moment with teenagers!”