Parenting and Lupus
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."