Advice from teens on adjusting to life with lupus

Lupus Foundation of America

Resource Content

Brina Olunkwa, 17, of Upper Marlboro, MD, says living with lupus has meant some major lifestyle adjustments to help her balance a busy school, social, and extracurricular calendar—in addition to keeping a close eye on her health.

“Those first few months, when I was going through chemotherapy, I just had to make sure to schedule myself to get enough sleep and get all the work done,” says Olunkwa, who was diagnosed with lupus in May 2010 and counts National Honor Society and student government among her extracurricular activities. “I have a bad memory now, so I have to write everything down. I take naps after school so I can do my homework, and I go to sleep on time to make sure I can wake up and have enough energy for school and the day.”

Like Olunkwa, most teenagers today lead incredibly busy lives—their days packed with schoolwork, extracurricular activities, jobs, sports, family, and friends. But adding a chronic illness like lupus can threaten that balance.

Learn how to organize and plan

Helping teens with lupus prioritize and organize their lives is part of what Shelia Rittgers, MSW, LCSW, a social worker at Duke Children’s Hospital and Health Center in Durham, NC, does daily. 

“I talk a lot with teens about how to be proactive instead of reactive,” Rittgers explains. “Things like, ‘How do I plan a homework schedule? How do I organize my day?’” Overall, she says, teens should not put too much pressure on themselves to do everything perfectly. And if teens get a little behind schedule, she tells them, “Don’t freak out; [just] step back,” to determine how best to get everything done.

Managing sleep and school work were a big problem for Jordan Bobal, 18, who was diagnosed with lupus in March, during her senior year of high school in Atlanta. She had to learn to adapt to the changes lupus brought to her life.  “Before I was diagnosed, I always stayed up late working on my assignments, so I had to change that up.” Bobal discovered mornings were the best time of day for her to concentrate on her schoolwork. “Nighttime was always difficult,” she says.

Add flexibility to your school schedule

That’s not all Bobal did to adapt to her diagnosis. Determined to graduate on time, she decided to take some of her courses online. “To be at home and working at my own pace was great,” she says. “I could wake up in the morning when I was feeling good and do my schoolwork. And as things progressed during the day, and I started feeling worse, I could take a nap. If it wasn’t for online courses, I don’t know what I would have done.”

Bobal graduated in June and hopes to start college in the spring. She credits her guidance counselor with providing crucial educational support, and she advises other teens to talk to their school counselors about accommodations or schedule adjustments that could help them in school. “They’re there to help you,” she says.

That’s good advice, experts say. Janalee Taylor, RN, MSN, CNS, a nurse practitioner at Cincinnati Children’s Hospital Medical Center, advises teens with lupus to tell their teachers, friends, and other key people in their lives about their diagnosis, so they can get the support they need. “I think that’s really important. They’re also educating others as they go along, and raising awareness.”

Communicating regularly with his teachers was very helpful to Devin Lain, 14, who was in seventh grade when he was diagnosed with lupus nephritis. “Whenever I had to go to the hospital for chemo, it was only once a month, but it cut into the schoolwork I had to do,” the St. Louis resident says. “The teachers helped. They gave me extra time for the schoolwork, or tests or quizzes.”

Accept that your social circle may change

Peer support also proves crucial to the well-being of teens with lupus. Lain says his friends were critical to helping him get through chemotherapy and back to school after his initial diagnosis. And some of his classmates went pretty far to demonstrate their support of what he’d been through. They knew he’d lost his hair because of chemotherapy treatments, so about a dozen of his buddies shaved their heads to support him. “It was really cool,” Lain recalls.

Still, while teens with lupus say they don’t want to lose their connections with their friends, it can be tough to get together when lupus symptoms interfere with social plans. Sometimes joint pain and fevers keep McKayla Futral, 17, of Atlanta, from doing everything she’d like to. 

“If it were up to me, I’d be going off with my friends all day, every day, but I’ve realized my health is the most important thing.” Having a chronic illness has given her an important perspective, Futral says, and she realizes now that compromise is the key. For example, if she doesn’t feel up to going out, she’ll instead invite her boyfriend or friends over to hang out with her at home.

Find ways to stay active

And just as maintaining a connection with peers is important, so, too, is staying involved in activities that teens most enjoy. “You need to stay active, physically and emotionally,” says Rittgers. “It can help with sleep, [and] it can help with pain management. Doing all those things lifts your emotions and helps you feel a part of things. You’re not focusing on your lupus. You’re focusing on being a teen.”

For Lain, baseball is an activity that allows him to enjoy something he’s long been involved in—since before his lupus diagnosis. He’s played baseball since kindergarten and hopes to make his high school team next spring. He plays smart now that he has lupus. That means applying plenty of sunblock, and remembering that the inevitable sun exposure is probably going to make him more tired. When he knows he has a game or practice the next day, he is sure to get plenty of rest the night before. “That definitely helps,” he says. 

Other teens say they’ve taken up new hobbies or activities since being diagnosed with lupus. Futral, a high school senior, was a cheerleader for six years until she found out she had lupus. Then joint pain and sun exposure caused her to stop. She took up a new activity instead: pageantry. She made it to the top 15 of Teen Georgia USA last year. “I’m doing that pageant again in November, so I’m pretty excited about that,” she says. Prepping for the pageant is a big job in itself. “There’s a swimsuit competition, so I have to do the elliptical or the treadmill daily and keep on a strict diet. But we found that exercising and eating right has helped me immensely,” she explains.

Futral believes that her positive attitude has allowed her to continue to dream big despite the challenges. “It’s hard enough to be a teenager, and adding lupus makes it a tough road,” she says. “But with love and support from my friends and family, I feel like I’m a normal teenager who just happens to have lupus.”

Express yourself online

Social media and the Internet play an enormous role in teenagers’ lives today, and young people living with lupus are no exception. And experts say that for the most part, the ability to communicate seamlessly online with peers serves as a helpful tool for young people with chronic illnesses.

Websites and cellphone apps such as Facebook, Twitter, Instagram, and others can help teens feel less isolated, even when they are unable to go out due to medical issues. “If we have a teen in the hospital, it’s a lifesaver if they can text or get on the computer,” says Shelia Rittgers, MSW, LCSW, a social worker at Duke Children’s Hospital and Health Center in Durham, NC.

Jordan Bobal, 18, says she uses social media sites more since she was diagnosed with lupus. “I’m on YouTube because it makes me laugh, and I started using Tumblr.” Bobal says on days when she isn’t feeling up to leaving the house, she’s able to stay connected to her friends through Facebook.

McKayla Futral, 17, is also an avid Facebook user, and she finds comfort in the lupus-related pages she follows there. “I can go on when I’m having a bad day and somebody else is going through the same thing, and that really helps me.”

Both Futral and Bobal say they are using social media to express themselves and help others with lupus feel less alone. And they both blog about their experiences with lupus.

“My blog has helped me so much, just to get in touch with people and share my feelings,” Futral says. “I feel like I help people through my blog because they feel like they’re not going through it alone.“

Bobal created her blog so she could write and use pictures to describe how she’s feeling. “I’m a photographer, so I have a photography page, and I have a page where I can reblog things that other people said that were uplifting. Then, when I’m feeling down, I can look back at that and it makes me feel better,” Bobal says. “It’s a really great release for me.”