When you have lupus, taking care of yourself can be hard enough. If you're a parent — dealing with rheumatology appointments on top of dirty diapers and school bake sales — it may quickly become overwhelming for everyone.
"A parent's lupus will have an impact on their kids," says Robert Katz, MD, a rheumatologist and associate professor of medicine at Rush Medical College in Chicago. "It's a disease that affects the whole family."
There are techniques that will help make parenting with lupus easier, he says. Many parents with lupus — and their children — learn ways to thrive despite the illness. Here are some tips for parents with lupus, followed by advice on how to talk to your children about your condition.
Tips for Parenting with Lupus
- Make your own health a priority. As a parent with lupus, you may feel guilty about prioritizing your own wellness — shouldn't your kids always come first? But it's not selfish. If you wear yourself out taking care of everyone else, you could wind up sick with a lupus flare. "You can't be superwoman all the time," Katz says.
Remember the advice you get on the plane: in emergencies, put the oxygen mask on yourself first, then your kids. So get enough rest, reduce stress, and see your lupus doctor regularly. "If you focus on taking care of yourself first," Katz says, "you'll be better able to care for your kids."
- Create new traditions with your children. If you’re a parent with lupus, you might not be able to do all the things you used to do with the kids. Don't get discouraged. Instead, connect with your children through new family traditions. Make them low-stress, so you can participate even when you're feeling crummy. Try to set aside a night each week for a family movie or board game.
- Let your family know how you're feeling. As a parent with lupus, one day you might feel terrible and the next day you might feel pretty good. It can be hard for your family to keep up. Try using a number to express how you feel, with 1 being poor and 10 great. Then write the number on a white board in the kitchen when you get up, says Dawn Isherwood, RN, house educator at the Lupus Foundation of America. Your family will know how you're doing at a glance and can adjust their expectations.
- Stop feeling guilty. Parents with lupus often feel like they "should" be doing more. Some blame themselves for their lupus symptoms, feeling that if only they tried harder they would be more active, "better" parents.
When you start to feel this, ask yourself: would you think this way if you broke your leg? Or had cancer? Lupus is just as real and often just as debilitating. Going through life feeling guilty and self-critical won't help you. What's more, it won't help your kids either.
- Be willing to say no.There will be times when you'll be too sick to do things that your kids want or expect. It will be hard to disappoint them and they might be angry. Acknowledge their feelings and tell them why you had to say no. "If you can explain, even grumpy and cranky teens can be more understanding than you expect," says Katz.