From the Archives: Fall 2005 Lupus Now magazine
ALL IN THE FAMILY: Parents struggle to manage demands of lupus and their households
by Jaclyn Law
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."
Talk About It
Phillips emphasizes, "Good communication is the key to keeping family relationships intact, and even stronger, despite lupus. Virtually any problem that a person may encounter can be handled better with a support system with good communication skills."
Lehman suggests involving the whole family in finding strategies to handle the impact of lupus. "Everyone must be involved in recognizing the illness and making adjustments, both for the benefit of the family and for their own benefit," he says. "While it is very important that the family make the adjustments necessary to allow for the proper care of the person with lupus, everyone in the family must also take into consideration how they are going to adjust to meet the needs of the family members who do not have lupus. Everyone will have to sacrifice for the care of the person who is ill, but there should be sacrifices for the care of the well family members, too. This applies whether the affected family member is a sibling, parent, or child."
Both Mitchell and Frazier agree it's critical to keep family members engaged and informed of what's going on. "Don't try to shut them out of your bad days," says Frazier. "If they know you have good and bad days, they know where they can help, and they won't be bitter. Don't hold anything back."
Mitchell also holds family meetings to talk about her lupus, and school counselors offered her kids assistance when she was hospitalized with a life-threatening flare.
"It was horrible," she recalls. "When I was finally able to come home from the hospital, my youngest daughter didn't want to go to bed because she thought I would die if she went to sleep. To this day, she is very clingy and worried about me. It's a tough thing for a family to deal with."
Phillips says fear is a very prevalent emotion in families with lupus. "[There is fear about] what symptoms will be encountered, what the prognosis is, what side effects the medication will cause, and what impact lupus will have on the family."
In his book Coping with Lupus, Phillips suggests that parents with lupus encourage their children to ask questions and talk about their feelings. "Children, regardless of how old they are, may be especially vulnerable to the stresses and fears that occur when a family member has a chronic illness."
If your kids aren't yet willing to discuss the subject, Phillips recommends letting them know they're always welcome to. "Once your children know that they have the option of talking to you freely, they can decide what they wish to discuss ... If you show that you accept lupus and that you welcome questions about it, this will greatly benefit your relationship with them."
It's a Family Affair
Keeping the communication pathways open for kids and partners can definitely help around the holidays. It's important for a parent with lupus to ask for help when needed, and to allow others to help when they offer.
"I ask for help more than I used to, that's for sure!" says Mitchell, who is also busy running an embroidery business. "I try to plan things in such a way that other people can help out and I can delegate."
That includes redistributing chores to help relieve the year-round stress. "It started out with vacuuming," Mitchell recalls. "I have a big house, and after I did the vacuuming, I would become so sore and stiff, I had trouble moving and walking for several days afterwards. It just got to be too much."
So, a couple of years ago, she delegated more tasks to her husband, John, and her children, who she says are quick to assume her duties on top of their own, when necessary. "Even my 13-year-old son is very good at making dinner for everyone when I'm too tired or sick to do it."
Learning to say "no" is also crucial to stress management. It's a skill that Mitchell had to learn for the sake of her health. "I make things as simple as possible. Take charge of what you can and learn to let go of what you can't."Frazier's husband and kids also jump in and support her when necessary. When she started to lose her hair, her husband and son offered to shave their heads in solidarity. She was also deeply touched by a conversation she had with her oldest child: "My 18-year-old daughter said to me, 'You took care of us; now it's time for us to take care of you.' "
While support from family members is vital, it's also important that people with lupus find coping strategies that work for them. Writing in a journal, meditating, or taking "me-time" each day are just a few ways to unwind.
For many, spirituality is also a rock in times of crisis. Frazier credits her faith with helping her make it through the tough times. She adds that although life with lupus can be very difficult, she counts herself as lucky because, rather than falling apart under the pressure of life with lupus, her family has become stronger and closer. "Just knowing that I have my family's love and the knowledge that God is in my life, I cope." Then, after a moment, she adds: "We cope."
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