Cancer Is a Family Affair
Caring for the Siblings of a Child with Cancer
by O.J. Sahler, MD
A diagnosis of childhood cancer is the beginning of major changes in how a family operates. Fear and anxiety about the child’s type of cancer and whether effective treatments are available, trips to the cancer center for treatment, and recurrent periods when the child just doesn’t feel well not only take the parents’ time but can also sap their energy and emotional reserves. In addition, parents have to make decisions about how to maintain health insurance and provide for their family’s living expenses.
Cancer is a family affair, and it’s easy to see how having a seriously ill child affects the adults in the family. But what about the other children? We know from interviews, surveys, and the diaries, stories, and drawings of brothers and sisters of children with cancer that a cancer diagnosis affects them, too. Exactly how cancer affects healthy siblings depends on their personality and style of coping with problems, their relationship to the ill child, and their own emotional and tangible burdens.
Exactly how cancer affects healthy siblings depends on their personality and style of coping with problems, their relationship to the ill child, and their own emotional and tangible burdens.
Personality and Coping Styles
Some people are “externalizers,” meaning they show how they feel and are more likely to express their feelings. Others are “internalizers”and keep their emotions – especially negative ones – to themselves. Rather than exploding when they are hurt or angry, they are more likely to keep their feelings inside and wonder what they did wrong to have these feelings. Children who are internalizers often feel responsible for events or situations that are beyond their control. The idea that they might have caused their sibling’s cancer is one that is likely to arise in young children (4 to 10 years old) or children who did something around the time of diagnosis that they think caused the cancer (for example, roughhousing that led to leg pain, which was ultimately diagnosed as osteosarcoma).
Sometimes children have to be asked directly if they think they had anything to do with causing the cancer because even thinking about such a possibility can be so frightening that they can’t bring it up themselves. Asking a physician or nurse to raise the issue can be helpful. These professionals have an expertise that children recognize, and their reassurance that the child did not cause their brother or sister’s cancer can provide a sense of relief.
Brothers and sisters don’t always get along. When a child doesn’t particularly like the sibling who got cancer, it can make them feel responsible for causing the cancer, especially if the child is still at an age when they believe that if they think something, it will happen. Conversely, when a sibling that a child adores is diagnosed with cancer, it can magnify his or her sense of sadness or anxiety.
The idea that they might have caused their sibling’s cancer is one that is likely to arise in young children or children who did something around the time of diagnosis that they think caused the cancer.
Jealousy is a pervasive negative emotion felt among siblings. Cancer can magnify feelings of jealousy if they already existed, and it can cause jealousy to arise even among siblings who typically get along well. A sibling of a child with cancer may ask, “Just because Johnny’s sick, how come he gets gifts/money/ attention?” In addition, feelings of jealousy can result in the healthy child pretending to be sick in order to get more attention.
Tangible and Emotional Burdens
One example of a tangible burden felt by older siblings of a child with cancer is a teenager having to come home immediately after school to babysit her younger siblings while their parents are at the hospital, rather than being able to participate in a club or hang out with friends. Another example is a teen having to work longer hours at his after-school job because his parents no longer have the extra money to pay for special events he wants to attend. Some siblings make these adjustments willingly. Others feel an acute sense of unfairness, especially when treatment extends over months or years. They may not take their feelings out on the ill child, but they might become distant or withdrawn from parents as a way of expressing their unhappiness.
What You Can Do
Being a parent of a child with cancer is not easy. How do you spread yourself around enough to meet everyone’s needs? How do you keep enough energy in reserve so you can keep going?
Recognizing that these responses are normal for siblings of a child with cancer is half the battle. Yes, there is likely to be jealously. Yes, siblings may feel that you are asking too much of them or that you don’t care about how they feel. Let them know you understand that they’re feeling like their brother or sister with cancer is getting more toys, visitors, or attention. Then reassure them that they are still very important to you.
For older siblings, say something like, “I know that having to take care of the kids after school until Dad gets home from work has been hard. You’ve been doing it for two weeks, and you need a break. What can we do?” As you think through possible solutions, don’t be afraid to ask others for help.
Be sure to spend quality time with all of your children. Let them tell you about their day, their worries, and their joys, and make sure they know how things are going with their brother or sister’s cancer. Let them share in the ups and downs of the cancer journey, but also let them participate in activities apart from the cancer that they will remember fondly later. You can look back and say, “Remember how we almost wore out the Wii controller because we played Mario Party so much?”
Being the brother or sister of a child with cancer is not easy. Siblings can feel tension, anxiety, worry, loneliness, jealously, and abandonment. But they can also feel joy because their sibling is responding well to treatment, secure because the family is looking out for one another, and included because they know they are still important to you.
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Dr. O.J. Sahler is professor of pediatrics, psychiatry, medical humanities, and oncology at the Golisano Children’s Hospital of the University of Rochester Medical Center in Rochester, NY. She is also director of Psychosocial Services and Research and of the Long-Term Survivors Program.
This article was published in Coping® with Cancer magazine, March/April 2013.