Parenting and Lupus
Parents struggle to manage demands of lupus and their households
As the days get shorter, most people look forward to the cooler months and the flurry of special occasions they bring. From Halloween to New Year's, it's a festive time of year-the season for family get-togethers, Thanksgiving turkeys, and social invitations. And while these celebrations can be fun and exciting, they can also be very stressful. For parents with lupus, that can spell trouble.
"This has always been a very hard time of year for me," admits 39-year-old Valinda Mitchell from Orting, WA. She was diagnosed with lupus in 1988, a few months after the birth of the first of her four kids, now ages 12 to 17. "All of my major flares always happen around this time of year because of the stress from the holidays. It starts around the time the kids go back to school and doesn't let up until after New Year's."
Mitchell's experience is not unique. Parents with lupus who are juggling several responsibilities may feel overwhelmed by the added demands of special events at their kids' schools and seasonal activities such as trick-or-treating, big family feasts (complete with those dreaded family squabbles), and holiday gift shopping. Staying serene is a real challenge-if not downright impossible-and these parents run the risk of exacerbating their lupus symptoms if they run themselves ragged.
Thomas J. A. Lehman, M.D., chief of the Division of Pediatric Rheumatology at the Hospital for Special Surgery, and professor of clinical pediatrics, Weill Medical College of Cornell University in New York, believes that lupus can be managed during the holidays, with this caveat: "People with lupus should remember not to overextend themselves."
The good news is that the strategies that can help people with lupus cope with holiday stress can be beneficial year-round.
Don't Worry About "Carrying Your Weight"
Lorrie Frazier, a 33-year-old licensed practical nurse in Hamilton, OH, would agree. She received her lupus diagnosis in 1997 during her second pregnancy, after years of experiencing flu-like symptoms. Frazier is now the mother of two children and three stepchildren and has been married for nine years to her husband, Don. Over the years, Frazier and her family have found ways to make the holidays less hectic.
"Flexibility is very important," she says. "Break large family gatherings into smaller get-togethers. You don't necessarily have to meet on the actual holiday. Make sure your extended family understands why you can't go to five different places on Christmas Day."
Moms and dads with lupus often find keeping up with their kids' activities challenging at any time of year, and it can get tougher around holidays. Frazier, for example, is forced to miss out on many events because she feels too ill to attend. "I feel really bad about that, about not being able to be there."
Mitchell also gets frustrated with the impact lupus has had on her family life. "I feel like our lives revolve around my doctors. It makes it really hard. Sometimes I just want it to stop," she says.
According to Lehman, these feelings are normal. "The impact of the diagnosis of lupus on a family is profound," he says. "Every family member is affected."
Robert H. Phillips, Ph.D., a psychologist, founder of the Center for Coping in Hicksville, NY, and author of several books about lupus, says that lupus can be "devastating" to family relationships, and that parents with lupus often feel guilty. "They experience guilt because they don't think they're 'doing the job' or 'carrying their weight' as a good parent or spouse."
To cope with the chaos that lupus brings, Mitchell and her family try to keep things as normal as possible. "We all just take it one day at a time and do what we can. Yes, I'm sick, but my kids still have sports and music lessons and their friends. We all have things besides my illness. We try to create balance and not dwell on what's not positive."