Even for a mother who is totally healthy, children can be a challenge. They need to be fed and clothed. If they are young enough, their diapers have to be changed; if they are older, they need help with homework. They need to be read to, played with, cared for, and listened to. “Women who are mothers know fatigue,” says Abigail Neiman, MD, a rheumatologist in Houston. “Kids wear you out.” Neiman knows what she is talking about. She’s the mother of two preschoolers, and during her childhood, her own mother had a severe form of lupus. “If you have a chronic illness on top of kids, and you’re taking medicines that can have side effects, it can be overwhelming,“ she says. Lupus is disabling. Mothers with lupus describe joints so swollen and painful that they cannot lift a toothbrush to their mouth, much less buckle a child into a car seat or unscrew a jar of peanut. They talk about fatigue so crushing that it’s hard to put one foot in front of another, about the disappointment of missing out on birthday parties and school plays. And they talk about the loneliness of lupus, a young woman’s disease, and the guilt they feel that they have not been there when their children need them.
“The hardest part is that you can’t understand how you can mother without doing everything,” says Jess Williams, who balances lupus, three boys, and a job. “But somehow we do.”
About 1.5 million Americans have been diagnosed with the chronic autoimmune disease, in which the body attacks its own tissue. Symptoms can vary in type and severity, but lupus causes inflammation, fatigue, and pain, and sometimes lasting damage. Any part of the body can be affected, from joints and skin to major organs such as kidneys, lungs, the heart, and even the brain. Lupus can’t be cured, but Robert Katz, MD, a Chicago rheumatologist and the chairman of the Medical Advisory Board of the National Lupus Foundation, Illinois Chapter, says that with good medical management, it can go into remission, and some patients can be free of symptoms for a long, long time.
Nine out of 10 people who get lupus are women, typically between the ages of 15 and 45. The cause isn’t known, but a leading theory suggests that the timing indicates some connection with hormones. Unlike other chronic conditions, many women with lupus have children—and that is a huge challenge.
“You are going to take care of your kids and put them first,” says Sara Gorman, the mother of two girls, ages four and six, in Alexandria, Va. “You will never let them fall through the cracks.” The challenge, she says, is taking care of yourself.
In 2001, less than six weeks after her wedding, Gorman was diagnosed with lupus at age 26. At different times, her heart, lungs, kidneys, pancreas, and skin have all been affected. She has lost her hair, been hospitalized with pericarditis—inflammation of the lining around the heart—and had several blood transfusions.
After trying, unsuccessfully, to fight through the lupus with sheer willpower, Gorman left a high-powered job in television production. Between disabling flares, she had her two girls, wrote a book called Despite Lupus, and began a business selling fashionable pill bags for medication.
In the Gorman home, lupus isn’t something to be embarrassed about. She and her husband talk about her condition openly with her children. When she was losing her hair and it was all over the place, she explained the symptoms of lupus and answered her kids’ questions. And when it came back in, they were her biggest champions and helped style it.
“Lupus is not a word we whisper about,” Gorman says. “It’s all out in the open.”
Her little girls have responded with warmth, understanding, and compassion. When Gorman’s hands are too sore even to open up a jar of peanut butter, her six-year-old takes it upon herself to fix lunch while her four-year-old gently holds her mother’s hands and blows warm air on them to make them hurt less. When she struggles with a flare, her daughters curl up in bed with her; it’s their job to hold the book and tell the story.
“I think that kids are capable of being compassionate if we let them,” says Gorman. “If they had never known, it would have been a disservice to them. They were able to do something instead of watching me suffer.”
Children whose mothers have lupus have to grow up a little faster, says Neiman: “They are certainly carrying their weight.” When Neiman was younger, her mother was very sick with lupus. She remembers when that she was in fifth grade, she would get her younger brother and sister ready for school and make their lunches.
“I did things a typical 10-year-old did not do,” she says. “I was not resentful, but there was a certain amount of my childhood that was not childish.” Neiman’s own patients with severe rheumatoid arthritis have similar experiences today. “There is definite pressure on the children.”
A mother with lupus has to fight smart. “A lot of what I tell patients is that you have to get to know your bodies and rhythms and work with that,” Neiman says. “You can’t put your head in the sand and power through it.”
Stress, both physical and mental, brings on flares. Neiman tells her patients that “life happens—sometimes you have to take a sick kid to the hospital, but you have to know that the next day, you won’t be too productive.”
Social supports such as a spouse, extended family, or support groups are vitally important, says Sarah Stothers, national nurse educator for the Lupus Foundation. Local Lupus Foundation chapters not only offer support groups; they sometimes offer or can arrange low-cost or even free daycare.
Stothers is also a big believer in after-school programs. Sometimes, a woman just needs to sleep. She tells mothers: “You’re not a terrible parent—you’re tired. You have to take care of yourself before you take care of everyone else.
“I am honest with them,” she says. “You can’t do it all—no one can do it all. Do one thing and leave the rest.”
For Gorman, a daily afternoon nap is revolutionary. When she sleeps, her joint pain is better, and her hair stops falling out. It also reduces stress—and stress, she says, “is a killer.”
She recommends that women not just to ask for help, but actually tell their support group how to help. “Someone making me dinner is tough for me,” says Gorman, who loves to cook. Instead, she suggests that they weed her garden or do her grocery shopping.
“Asking for help is not a weakness,” she says. “It’s showing that you’re strategic enough to care for yourself.”
William was diagnosed with lupus in 2010 when her kids were 7, 12, and 15. The disease is still not controlled, and she has about five flares a year. Williams wishes she had involved her kids earlier. “I tried to hide it from them and pretend everything was normal,” she says. That didn’t work; at one point early on, her seven-year-old asked her if she had cancer.
Five years later, she’s still struggling with lupus. No late movies for her and no traveling, because flares are too frequent and she can’t plan around them. She has dropped activities that are not essential—for instance, she no longer volunteers at her kids’ schools—so that she is healthy enough for those that are.
“Don’t let the guilt eat you up, because it will, and it will kill you.” Williams says. “Guilt is already there if you have lupus and can’t do things and your kids are young and don’t understand.”
Katz estimates that 60% of his patients have small children at home. He says women figure out how to manage, because they have to.
“Mothers,” he says, “don’t give up on their kids.”