Impact of Juvenile Arthritis on Siblings

By Beth Axtell

Siblings of children with juvenile arthritis (JA) often experience the full gamut of emotions — from guilt and resentment to anger, loneliness, anxiety, confusion and the feeling that they never get enough attention. But with a little effort and creativity, the family can work through these issues — and even come out stronger as a result, experts say.

Chronic disease affects healthy siblings, leaving them more susceptible to anxiety, depression, symptoms of posttraumatic stress, lower quality of life and peer problems, according to a 2018 review in the Turkish Archives of Pediatrics . However, it also found that children and adolescents who grow up with a sibling who has a chronic disease become more sensitive, patient, compassionate, empathic, easygoing and socially competent.

Family attitudes and actions can play a big role in who has coping problems and who doesn’t. Experts give these tips for keeping family harmony and ensuring all your kids grow up to be compassionate and happy.

Spread the Attention A round

Siblings often feel resentful of all the attention and even gifts their brother or sister with an illness gets. “It’s natural and essential, especially with the initial diagnosis, for the family to focus attention on the child with special needs,” says Joanna H. Fanos, PhD, a research psychologist at San Jose State University focusing on the impacts of pediatric illnesses on families. “Yet you want all children to feel loved and lovable. There’s a real danger of that not happening if they don’t get a lot of time and attention.”

Parents can make special play dates for the healthy siblings, recommends Elizabeth Roth-Wojcicki, a nurse practitioner in rheumatology at Children's Hospital of Wisconsin in Milwaukee. “One-on-one time with each child goes a long way to making everyone feel special.” She further advises you enlist the help of relatives or friends to spend time with your other children while you take your child with JA to appointments. Or have them take your child to the appointment while you spend time with the siblings.

Involve Everyone

Siblings may not understand what’s going on with their sister or brother with JA. Take the siblings to doctor or therapy visits so they can better understand the situation. Siblings can also lend a hand in treatment. They can do physical therapy exercises at home together. They can be involved when it’s injection time — holding hands, providing distraction or getting a bandage ready. Roth-Wojcicki says that older siblings can even be taught to give the injections.

Divide Chores Equally

Make sure everyone has age- and ability-appropriate chores. The specific chores may have to be adjusted for physical abilities, but everyone needs to participate, says Roth-Wojcicki. While it may not be possible for a child with limited mobility to rake the leaves, it may be possible for them to fold laundry.

Be Flexible

Make sure everyone gets a say in planning family activities, but everyone also must realize that when a child with JA has a flare, plans may have to be altered; vacations may be shortened. Manage expectations for what family time might look like, then adjust as needed.

Talk ahead of time about how flares affect the whole family, says Roth-Wojcicki. “Talk it through with the kids and make contingency plans.” If you have to cancel a trip to the amusement park, have a movie and popcorn night instead. Or break out the board games.

Communicate

Guilt can be a common feeling among healthy siblings. Young siblings may think they caused the disease. They might struggle seeing their sister or brother in pain and feel bad that they can’t take the pain away. They may feel guilty for their own feelings of resentment or jealousy as well.

Fanos says that communication is key when dealing with feelings of guilt. She advises parents to check in with siblings periodically to gauge how they’re doing. Parents can ease some of the sibling guilt by acknowledging that such feelings as jealousy or resentment are normal. “Make sure you constantly reinforce ‘I love you,’ as well,” she says.

Look for Signs of Distress

If you see signs of stress in your kids, sit down and have a good talk. Here are a few signs of stress to watch for:

• Dropping grades
• Stomach aches
• Headaches
• Clinginess
• Acting out
• Sleeping or eating problems

If you continue to see these signs of distress, it may be time schedule some time with a mental health professional to help your kids cope. Remember, juvenile arthritis is a family affair, so remember to check in with how you're feeling, too, and carve out some "me" time .