The Winds of the Hurricane:
Siblings in the Storm of Illness
By Joan Fleitas, Ed.D., R.N.
When children are diagnosed with serious illnesses, it is as if a hurricane rushes in without warning. Their sisters and brothers find themselves swept up in its winds, confused about its scope, and guilty about its origins. They look to their parents for guidance, security, and a support that at times must seem impossible to provide.
The complexity of normal sibling relationships is heightened by illness in the family, and the nature of the intricate bond between children rises to the surface. Siblings have ambivalent feelings about one another in the best of times, mortal enemies one minute, sharing secrets the next. When their sisters or brothers have serious medical problems, this ambivalence swirls in hurricane proportions, with jealousy, fear, confusion and loneliness fallout from the strong winds . This article highlights some of the common concerns of siblings, offers suggestions for addressing each in productive ways, and concludes with a look at some of the positive outcomes for siblings from this storm that they are asked to endure.
Older siblings are often called upon to meet increased care-giving demands when a sister or brother is seriously ill. They complain that they are expected to grow up too fast, to become like parents when they are still children. One youngster remarked that when her brother was hospitalized for the tenth time, she found it “difficult to live up to the expectations of being a super-kid…just for once I wish I wasn’t the one that my parents say that they can always count on.”. Another noted that when her sister was hospitalized, family roles changed and her responsibilities escalated: “My baby brother, who was only eleven weeks old when my sister was diagnosed, became one of the youngest babies in the child care center. And I became the only eleventh grader who had to hurry from school to collect a baby from child care, hurry home to clean the house, feed the baby and start dinner, all before I visited my sister or started my homework.” Suggestions: Remember to treat your children as children rather than as adult caregivers. Keep communication channels open to learn from them how much responsibility is too much.
Jealousy and resentment are twin demons common in sibling relationships but intensified by the illness of a brother or sister. One child complained that “I saw her get all these presents. I saw everyone visiting her and babying her, and there was nothing I could do about it…” It is natural to feel overwhelmed by the needs of children with serious illness, and it is natural for you, your relatives and friends to try to compensate for their pain and stress by giving them presents and spending extra time with them. From a sibling’s perspective, it is natural to resent and misunderstand those overtures of concern. Suggestions: Remember that these perspectives are worlds apart, and that your healthy children are expressing their sense of the world by their behavior. Although it is natural to respond with frustration and anger when jealousy rears its head, try to decode its meaning and address the needs that are masked by the whines and complaints. Minimize favors and presents that focus on the sick child, and try to arrange special times with healthy siblings.
Siblings talk about the guilt they feel, too. “Why her? Why not me?” and “Maybe she’s sick because I told her I hated her…” Young children think in an egocentric manner, believing that they are omnipotent and that as such, their thoughts alone can cause illness in others. Believing that they are to blame is a natural consequence of this cognitive trait. They are also unable to think abstractly, and their limited concept of time results in hours away seeming like eternity. Such characteristics place them at risk for misinterpreting events, and for acting out their anxieties in ways that are then misunderstood by parents. “I remember when my twin sister was in the hospital. I cried and wet my pants when everyone but me stayed there with her, and my dad told me not to be so selfish and to shape up.” Suggestions: Make it a priority to spend as much time as possible with your non-ill children. Help them to express their feelings, reassuring them that they are not to blame for the illness, that thoughts and feelings didn’t cause it, and provide them with information in developmentally appropriate language. Keep your explanations simple and truthful. You may not be able to answer all of their questions, but telling them that you don’t know rather than changing the subject or discouraging their expression encourages them to continue to share concerns. If they are unable to reveal their feelings, you may need to ‘de-code’ their behavior, “You’ve been whining a lot today and I wonder if that really means you’re worried about your sister.” You might also find that using a ‘third-person’ approach is productive, “Many children worry about what’s going on when their sisters or brothers are very sick. I’m wondering what sorts of things you’ve been thinking about…”
When children are allowed to spend time in the hospital, their fears often go unrecognized. This adolescent poignantly explained what her visits entailed: “It was eerie, actually. The doctor looked through me as if I was a plant or something. He just talked to my Mom. There I was, scared out of my wits”, my sister asleep in bed with a high fever, and all those tubes and equipment...I felt angry and confused…and pretty lonely, too. She’s my best friend”. Suggestions: Major children’s hospitals employ child life specialists who are skilled at helping siblings cope with such situations. Use them as a resource. Remember to translate medical jargon for your youngsters. Many parents find it helpful to keep a diary of progress reports from health professionals, with pages set aside to pose questions to them and request illustrations of treatments as appropriate. This information can then be conveyed to siblings.
Siblings often worry that their brothers or sisters will die, or that they, too, will contract the illness. “Well to begin with” 13-year-old Karen explained, “I figured that since Robbie got this thing, then I would too…we’re so close and it’s so scary to me. Sometimes at night I pretend that I have magic powers that can protect both of us. I really hate it when he’s in the hospital. I miss him and am scared that something awful will happen to him there. He’s my only brother.” Suggestions: This comment highlights the need to keep open the door to communication with all of your children. Parents are often reluctant to tell their other children about the illness, believing that keeping them in the dark is protecting them from pain and anxiety. But brothers and sisters of seriously ill children are passionate in their response to such secrecy, “I just wanted to know. I figured that it was much, much worse than it turned out to be, since nobody would tell me what was going on.” Talking to them about how you feel will give them the OK to share their feelings. Many youngsters sense that there is a taboo about expressing such fears to parents; “I never said anything to my mom and dad because they had so much on their plates already”, explained one youngster. Karen’s concern about her brother also highlights her fear of contagion. Assuring children that they can’t “catch” the illness does much to protect against unnecessary anxiety.
Children also worry that their parents will never again have time for them. “Sometimes I feel so alone and left out, and even unloved”, nine-year-old Jeffrey writes. “I know I'm overreacting, and I know that some people have so much less than me, but it's not my fault I don't have any medical problems. I wish I did!” A younger child shared some of his concerns as he explained, “when Mommy goes to the hospital, I’m afraid that she will stay there forever. When I don’t see her for a very long time, I’m just plain scared. That’s all I can tell you, except that I got to come into the hospital to visit today. I don’t want to leave my brother’s room…ever.” Suggestions: One explanation to your children about their sibling’s condition is never enough. Discuss family matters with them frequently, planning for a future that includes everyone if such an outcome seems probable. Remember that you are not alone in coping with medical crises. If family and friends have not volunteered to assist you, ask them for their support in concrete ways. If they have offered their help, write down a list of the things that would help your family to cope. When your other children will be spending time with Grandparents, Aunts and Uncles, neighbors or friends, tell these caregivers about daily routines to minimize the disruptions in their lives. Write or tape-record "letters" and phone the healthy siblings as often as you can. Expect that young children may cry when hearing your voice. This is how they communicate that they miss you, and they will feel better knowing that you know. Tape-record bedtime stories, or read them over the phone if possible.
The winds that swirl around the family during medical crises leave children feeling disoriented and very alone. “I figured that I was the only kid who ever had to deal with such an awful thing. I was sure nobody would understand. Lucky for me I met a boy at this group called The Sibling Support Network, and his brother was sick, too, so we could talk to each other about it.” Suggestion: Contact the Sibling Support Network (http://www.seattlechildrens.org/sibsupp/ussiblingprogramslist.htm) or the Child Life Specialist to learn of resources in your area that could meet this need for connection with others experiencing many of the same feelings and needs. Encourage the continuation of friendships with classmates and neighbors.
Although there are many difficult issues to address when serious illness precipitates storms in the home, there are positive outcomes as well as ones that lead to distress. Much of the time, children in families where a sibling has a serious illness display greater maturity and independence than do their age mates. These children admit to feeling good about themselves and are proud of their sense of responsibility. Often more altruistic, they have a strong appreciation of health and of family togetherness that serves them well in times of stress. These teens expressed it well, “I've lost a lot of my youth, and missed a few teen age experiences because of our family's journey through the cancer maze…but I'm inspired by my sister’s courage, and the spirit with which she faces her challenges.” And “I no longer take health for granted, and I feel good when I can help other people. I learned how to do that when I needed to be there for my brother.”
The hurricane that surrounds a medical crisis need not be devastating to the family. Consideration of common stressors and related strategies of care may assist you in weathering the storm.
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Last updated: November 14, 2004