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.
Parenting with Lupus: How to Get Support
If you're a parent with lupus, you're going to need help from a lot of different people. Here are some pointers on how to get it.
- Have scheduled help. Don't get extra help on a casual, as-needed basis. Build support into the week. Maybe it means getting a nanny. Maybe it means asking your sister to take the kids grocery shopping once a week. Maybe it means hiring a 12-year-old girl from the neighborhood to be a mother's helper after school. However you do it, parents with lupus need to have regular, scheduled help, Katz says.
"You must have time to yourself that you can depend on," says Katz, "time when you can take a nap or take a walk and know that your kids will be OK."
- Plan for emergencies. Most people with lupus do quite well with treatment. Even so, parents with lupus should all have a disaster plan in case they ever get seriously sick or hospitalized, Katz says. Make sure close friends and family know what they would need to do. Not only will a plan help things run more smoothly if you have a health setback, it will reduce your anxiety now.
- Don't let your kids get overburdened. If you have lupus, your kids will probably have to help out more around the house than they would otherwise. That's to be expected. Just be careful not to put too much on your children's shoulders. "You don't want your kids to grow up feeling like a semi-parent," says Katz.
- Consider seeing a therapist. Being able to express your concerns to a therapist — about everyday hassles as well as serious health anxieties — will help you feel better and more in control. A therapist can teach parents with lupus practical techniques to manage the day. Family therapy can be a good idea too. It will allow your whole family to express themselves freely in a safe, controlled environment.
- Strengthen your relationship with your partner. If you're raising kids with a spouse, the two of you need to have a solid relationship. Inevitably, your lupus will put extra stress on your partner. It’s important that you not let your relationship deteriorate so that you're the "sick one" and your partner is the caretaker, Katz says. "Even if you're worn out, there are still ways you can support your spouse," he says. "Give him or her a chance to talk about their day or their stresses. Do little things to help your spouse feel better."
Parenting with Lupus: How to Talk to Your Kids
You might feel uncomfortable talking to your kids about lupus. Lupus is unpredictable, and you may not be sure of your health in the long-term. It's tempting to avoid the subject. But that won't work for long. Even young kids will sense that something is wrong. If you don't talk about it, your kids might not ask — but they might worry in private.
As a parent with lupus, the best you can do is reassure your kids, realistically, about your health. Here are some tips for the conversation.
- Explain the basics. The specifics depend on your kids' age and your health. Talk about how lupus affects you, says Lisa Fitzgerald, MD, a rheumatologist at the Lupus Center of Excellence at the Beth Israel Deaconess Medical Center in Boston. It might make you tired, achy, forgetful, and cranky. Stress that you’re getting good treatment and most people with lupus do well. Make clear that lupus is not like cancer — it doesn't get worse and worse. Instead, it's unpredictable — you'll have good days and bad days.
- Let them ask questions. Don't feel obligated to tell your kids everything about lupus, Katz says. Let your kids guide the conversation with their questions. If they ask about the scary stuff — like whether you might die — answer them in a reassuring way. But you're not obligated to talk about unlikely worst-case scenarios if they’re not asking, Katz says.
- Ask them what they know about lupus. You really can't predict what your child might have picked up about lupus, Katz says. Your son might wonder why you seem so rundown compared to apparently healthy celebrities who say they have lupus. Or he might be terrified because he assumes lupus is a death sentence — all because a friend told him his grandmother died from it 20 years ago. Find out what they know and correct any misconceptions.
- Make it an ongoing conversation. When your discussion is winding down, make clear that it's not over. Tell your kids that they should come and ask you questions as they think of them. It might take some time for them to process the information and figure out what they want to know.