For many young people with lupus, the transition to caring for themselves as adults is challenging.
Parental Support - Finding guidance for Mom and Dad
By Leslie Quander Wooldridge
When children have lupus, they hurt. And when a child hurts, parents hurt, too.
“It can be very emotionally traumatic to see your child in pain,” says Meenakshi Jolly, M.D., M.S., director of the lupus clinic at Rush University Medical Center in Chicago. “As a parent, you want to help your child, but you have no control over their disease. It can be frustrating.”
Kim Wilson of Bridgeport, WV, knows what it’s like to care for a child with lupus. Her 15-year-old daughter, Danielle, must take several medications to keep joint pain and fatigue at bay. And if Danielle forgets, as teens sometimes do, she hurts more.
“When she was first diagnosed, at age 8, it was devastating,” Wilson says. But she found that talking with her husband and supportive friends helped ease the burden. “You can’t keep it all in,” she explains.
Like Wilson, parents of children with lupus should reach out for emotional support, whether their children have been recently diagnosed or they’ve lived with lupus for years. “Lupus is lifelong. It’s a chronic disease,” says Jolly, noting that children may experience fatigue, frustration, and even depression. “The family may find it difficult to handle these issues.”
Wilson takes heart in the fact that Danielle is emotionally well. She plays softball at school—although she can’t run as fast as some other players—and has fostered supportive friendships. But it’s hard for Wilson to watch her daughter miss school because of pain.
Still, Wilson and Jolly agree it’s important to be positive. And Wilson has developed a deep admiration for her daughter. “Danielle has always had a wonderful attitude,” she explains, “and she is our hero with handling this illness.”
- Talk to your child’s doctor. Understanding lupus is key for coping.
- Pursue peace. Whether you go to a house of worship or enjoy nature with loved ones, seek out calm.
- Meet similar parents. Ask a hospital social worker to connect you, or find others via a support group. And don’t forget the LFA message board for caregivers, where you can connect with other parents.
- Consult with a counselor. Don’t hesitate to reach out to a professional if you need to. After all, you must feel good about yourself in order to help your child.
For individuals with lupus, bone health may be a concern as medications can lead to bone loss. However, low bone mass density is often treatable.