Ten-year-old Alexis Thompson sometimes tells her parents that the house would be a lot cleaner if only she had a little help with the chores. Take the dishes, for example. “Alexis has trouble believing that a simple task like washing dishes can be too difficult for older sister, Victoria, 12, who has lupus,” says their mom, Kimberly.
In Paducah, Ky., the Harbin family struggles with the occasions when Taylor, 17, has a flare from his polyarticular juvenile idiopathic arthritis (JIA), causing him and his mother to miss his younger brother Jordan’s basketball game. “We have to work hard to make sure Taylor doesn’t feel guilty for missing the game, and that Jordan doesn’t get the impression he isn’t as important,” says Mary Harbin.
Those are just some of the issues that siblings and their parents deal with when a child in the family has arthritis. Siblings of children with a chronic illness often experience the full gamut of emotions – from guilt and resentment to anger, loneliness and a feeling they never get enough attention. But, experts say, with a little effort and creativity, the family can work through these issues – and even come out stronger as a result.
Staying Positive Together
According to a study published in the Journal of Developmental and Behavioral Pediatrics in 2006, healthy siblings of chronically ill children can be at greater risk for psychological and behavioral problems. But family attitudes played a big role in who had these problems and who didn’t, says Pamela Degotardi, PhD, a psychologist and professor at Queens College in New York City and member of the executive committee of the Association of Rheumatology Health Professionals.
“Kids and their families who had a ‘poor me’ attitude didn’t do very well,” she says. “They were the families who had adjustment problems.”
One key to warding off ill will is keeping everyone involved. It can be tough to be the brother or sister of a child who has a chronic illness and who requires extra support from the rest of the family.
“Siblings often feel resentful of all the attention their brothers and sisters get, and because they are asked to do more chores and carry more of the load,” Degotardi says. Make sure all the children have a say in family plans, and try to spread out the chores among all family members, choosing tasks that your child with arthritis can handle successfully.
Changes Bring New Challenges
Long before most families reach the point of deciding who's going to do what chores comes the arthritis diagnosis, and it makes an immediate impact. Routines are quickly altered to fit in doctor’s appointments, therapy sessions and time to take medications.
“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, assistant research professor in the Department of Pediatrics at Dartmouth Medical School and director of the Sibling Center at California Pacific Medical Center. “Yet you want all children to feel loved and loveable. There’s a real danger of that not happening if they don’t get a lot of time and attention.”
And when a child has a flare, the whole family can be affected. “It changed the way we did things as a family,” says Harbin of the time when Taylor was diagnosed, at age 11. Even leisure activities became different to accommodate limitations. Before Tyler was diagnosed, the family spent a lot of time at the baseball field, where both boys played. Though he tried, Taylor eventually had to give up baseball. Family outings also had to be modified for Taylor. Extensive hiking and biking trips were replaced with an afternoon of fishing or leisurely exploration of a creek bed.
Children also have to get used to not being as active with their sibling. Jordan Harbin gets frustrated because his brother can’t play a rigorous game of basketball. Alexis Thompson misses the times when she and her sister used to ride bikes together. And Bailey Sims, 9, knows that when she roughhouses with her brother Ryan, 12, who has oligoarthritis JIA, she has to be careful of his wrists and feet.
Making Everyone Feel Special
Experts agree that adjusting to a new family reality begins with open communication. “Be as honest as you can about the situation,” advises Fanos. “There’s less damage done to the child’s self-esteem if they understand that the time and attention the other sibling receives is out of necessity, and if they needed that kind of time, they would get it, too.”
“The fact that Victoria gets more attention than Alexis will not change,” says Kim Thompson. “But I try to help Alexis understand that the attention is not because she is needier – just that Victoria has different needs.”
Fanos encourages parents to listen to their children’s needs. “We’ve found that these kids really just want one-on-one time with their parents,” she says. “They see the sick sibling getting this alone time, even if it’s just a trip to the doctor, and they want it for themselves.”
Finding alone time is a strategy Teresa Sims has employed with daughter Bailey. “I take her to tea from time to time, one of her favorite things to do,” says Teresa, from Houston. And, whereas Ryan has to go to bed early, she’ll often give Bailey the extra perk of staying up 30 minutes later to read.
That quality time can also occasionally be shared with someone outside the family. When the Harbin family found that taking Jordan along on the six-hour trip to see Taylor’s rheumatologist was just too difficult, they started leaving him behind with close friends of his choice. “It became a special time for Jordan to receive some individual attention while we were away,” says Mary.
Fanos also advises parents to check in with siblings periodically to gauge how they’re doing. Parents can assuage some of the sibling guilt, acknowledging that such feelings as jealousy or resentment are normal. “Also, make sure you constantly reinforce ‘I love you,’” she says.
Mary Harbin preaches and practices such reinforcement. “We work hard to convey to both of our sons that they have been wonderfully created with unique strengths and interests, and we work to explore and celebrate each one.”
When to Seek Help
When is a child really struggling from the effects of having a sibling with arthritis? Fanos advises parents to seek help if children:
- Start acting out as a result of keeping feelings inside.
- Get into more accidents, because they’re distracted, upset or angry, they’re not taking care of themselves, or they’re trying to get attention.
- Exhibit clingy behavior – especially in younger children. “They may have separation anxiety if they feel mom and/or dad is away at doctor’s appointments or at the hospital all the time.”
- Find unhealthy ways to comfort themselves – through overeating, drinking (adolescents) or bad relationships.
- Start showing anxiety about getting sick, thinking that getting arthritis could happen to them.