Talking To Your Children About Your Cancer Diagnosis & Treatment
BY MICHAEL HAAS, MA, MFT
You have just received a diagnosis of cancer. You probably tell your husband or wife and your closest friend, but when do you tell your children? And what do you tell them? You are feeling stunned and shaken...how can you possibly help them deal with what is clearly going to be a life-changing event? Explaining cancer to a child is difficult and requires thoughtfulness, compassion, and some understanding of how children of different ages deal with trauma.
LIFE IS FILLED WITH DIFFICULTIES, SO WHEN DOES A DIFFICULTY BECOME A TRAUMA?
Psychologically, trauma involves the sudden loss of "denial" as a defensive option. We live in a world with many dangers; for the most part, we put them out of our minds and live with a series of probabilities that we can tolerate. For instance, we know we have to have fire insurance, but we tend not to worry about our house burning down day to day. The same goes for earthquakes. We take some reasonable precautions, of course. But if people went around concerned about earthquakes all the time, no one would be living in the San Francisco Bay Area. We may worry about getting into a car accident, but we couldn’t function if we stayed constantly aware of all the existing potential for crashes. In essence, we humans seem to be programmed to tolerate the possibility of low probability events. However, when one does occur, our typical coping strategies prove inadequate, our denial is suddenly stripped away, and we usually need a period of time to gradually rebuild our defenses. Whether or not an experience is a lasting trauma depends on its intensity and how it is handled.
Your task as a parent is to help regulate your children's emotional life and this does not change when you are diagnosed with cancer. You may fear that discussing cancer will somehow jeopardize their emotional equilibrium, but avoiding this discussion carries greater risks.
HOW IS CANCER A UNIQUE KIND OF TRAUMA?
Cancer is unique in that although the diagnosis happens suddenly, often it occurs when one does not particularly feel in ill health. Frequently, in fact, the cure seems worse than the illness. One's sense of danger is, at first, comprised more of what one knows or has heard about cancer than from actually being in immediate danger. Nonetheless, normal denial about death is suddenly torn away and one feels instantly scared and overwhelmed by all the decisions that have to be made, all the unknown perils to be faced, and the uncertainty of the treatment process.
Awareness of death is sometimes referred to as an "existential" crisis because it involves a fact of life that sooner or later everyone must face. But the unique existential fact about cancer is that it produces the ongoing awareness of death without any observable threat or certainty. One is left coping with chronic anxiety and fear, often over a great length of time. This perception of danger, combined with uncertainty, is one of the aspects of cancer that creates the most difficulty for parents when trying to talk to their children about the diagnosis. The danger is largely unseen and inexplicable, particularly to small children. Children may fear loss of a parent, but what they experience day to day may be more the need to adjust to a parent whose family role and physical appearance is constantly changing according to the effects of treatment. This is not necessarily traumatic, but it is surely a major source of anxiety and unhappiness.
A major purpose of talking should be to air feelings of frustration with day to day disappointments resulting from a parent being ill and to separate these from the "existential" fears about death and abandonment.
WHAT DOES IT MEAN TO "ACCEPT" OR "WORK THROUGH" SUCH
One key factor in certain kinds of trauma can be a sense of betrayal by somebody one trusted. Physical or sexual abuse both involve this combination of betrayal and helplessness. Our sense of trust in the world is broken because people we have relied on to keep us safe have, in fact, endangered us. A diagnosis of cancer is peculiar in this regard for adults. We may feel betrayed by our bodies, by ourselves, by God, but the "enemy" is less defined and less certain. It is therefore difficult to "blame" someone or something in particular. Although much is known about contributing factors to cancer in a population of people, at the individual level, the specific cause is usually unclear. This lack of identifiable "cause" is something that children under the age of twelve have a difficult time understanding and accepting.
When we experience a trauma, we tend to follow certain predictable strategies to "master" it. "Fight" or "flight" are genetically programmed options; faced with a sudden overwhelming danger, flight is a typical first choice. However, if flight remains the dominant response, certain unhealthy behaviors can become habitual. Some of these behaviors psychologists call "acting out." They can include drinking in excess, using illegal drugs, dissociation (emotionally and physically "not being there"), and compulsive actions of various kinds. In children we often see, in addition, difficulties in school, angry or violent behavior, promiscuity, and various kinds of withdrawal from usual family life. Anger and resentment targeting the ill parent specifically is not uncommon.
Other behaviors that have been called "acting in" may be harder to identify. These tend to involve an outward appearance of looking fine, but a secret depression is hidden below the sur- face. For example, children can seem ok, but harbor lots of worries they are not sharing. These sorts of behaviors or "symptoms" are usually signs of failure to "master" the difficult experience. When these kinds of symptoms are stimulated by a parental diagnosis of cancer, the best way to help will depend on the age of the child.
Working through involves developing the skills to prevent or un-do "acting out" or "acting in." Both are unhealthy forms of coping with trauma.
DO CHILDREN "WORK THINGS THROUGH" DIFFERENTLY FROM ADULTS?
Children’s normal development follows a path starting from strong egocentrism and gradually leading to increased objectivity. Mentally, as they grow older, children increase their ability to reason and are less and less fooled by their immediate perceptions. Furthermore, as they age, children become increasingly able to see things from somebody else’s perspective.
One important thing to remember is that since cancer treatment can extend over a considerable period of time, facts and feelings need to be discussed again and again as your child matures. For two to seven year olds, imaginary play may be an important arena for working out fears and mastering change. As a child grows older, more direct discussion will predominate. (See "What Is Imaginary Play?" at the end of the article.)
COGNITIVE STAGES IS IMPORTANT: "WHAT MAKES A CAR GO?"
Between the ages of two and seven years, children are busy mastering symbols in the form of language and are very curious about the world around them. "What makes a car go?" is a question that could be answered simply by replying, "The engine makes a car go." A child of this age is generally satisfied with this sort of response. Any discussion of what an engine actually is would quickly lose meaning and involve words he or she has no way of understanding. Explanations about cancer should be kept simple and reassurance is still of key importance. It is always best to ask a child if he knows what a particular word means before launching into an overly difficult explanation. After all, how could a five year old know about hematocrit, lymphoma, or metastasis? Another issue with this group, and even those a little older, involves causality. Everything "must" have a cause. Because in this age range children remain particularly egocentric, some may even believe that they are the cause of their parent's cancer due to something "bad" they said or did. Or they might wonder, with a magical thinking sort of illogic, "If you never had gone to the doctor, would you have gotten sick?" Another fear that might arise is, "Can I catch cancer from you?" This becomes especially perplexing for a child who, for example, is trying to make sense of your avoiding getting too close if he or she is sick. The real reason may well be that your immune system is compromised during a particular phase of treatment.
Between the ages of seven and eleven years, children are in the world of school. They are learning to read and write and manipulate mathematical symbols. "What makes the car go?" might involve a discussion of how the engine burns gasoline and the fire makes the car go. If a child shows interest, you might show him a simple model of an engine. But a discussion of how gas expands when heated and how pistons push the crankshaft will be lost until the next phase of development when children gain the ability to manipulate abstract ideas. Up until around age eleven, children's understanding remains mostly tied to what they can see. Explanations like, "Cancer is a disease that can be treated by doctors and we are doing everything we can to make sure mommy or daddy gets better," is something these children can understand. As your child gets closer to twelve, more detailed explanations about "infection" and "chemotherapy" can be included. What children under twelve will need is reassurance about changes they can see, like a parent going bald or being too tired to take them to the park.
Once a child enters the age of "formal reasoning," sometime in the early teens, he or she is more and more capable of comprehending complex scientific explanations about the world. A child of this age might get very engaged with how an engine actually works. He or she may also be quite interested in cancer, cancer research, and specific details of your treatment.
In general, the cognitive age of your child should determine the level and style of explanation you offer. Always check to see if what you have explained is understood. Assume nothing and pay particular attention to using difficult undefined scientific terms, which can be tricky. For example, the word "cell" might seem everyday to you, but it actually requires the ability to think about something outside daily perception. Also, a child might say he understands what "cell" means, but may be, in fact, concocting a strange explanation involving either jail cells or cell phones.
I LET MY CHILDREN KNOW ABOUT MY DIAGNOSIS?
It is important to remember that discussion of your treatment is not a one time event. Rather, it needs repeating over and over again. Not necessarily constantly, as this can be very exhausting and demoralizing, but often. There will be many ups and downs during treatment and children will observe many changes in you and in your family life. Adjustment to new realities will require frequent discussion of fears and frustrations as well as hopes and victories.
BUT WHAT ABOUT
FEAR OF DEATH AND ABANDONMENT?
If you finally decide that treatment is going to be unsuccessful, then a process of saying goodbye becomes essential. An ad- equate discussion of this would require another complete article since it is a difficult and painful topic and there are many ways to approach it appropriately. I will only make several comments here: Many resources are available and professional help may prove very useful. You cannot protect your children from this kind of loss, but you can arrange ways they can remember you and feel that you always will be with them in spirit.
A FEW WORDS OF ENCOURAGEMENT
Michael Haas is a Licensed Marriage & Family Therapist who has been working in the San Francisco Bay Area with children, their parents, couples, adolescents, and families for nearly twenty years. He can be reached at firstname.lastname@example.org or (510) 526-2118.
WHAT IS IMAGINARY PLAY?
When a child plays out the same situation over and over again, you know that he or she is attempting to "master" something and is trying to find a "solution." An example of this might be a five year old who plays with a stuffed animal and announces that it is "losing its hair." No reference will be made to the parent who has lost hair due to chemotherapy and the child will attempt to take care of the suffering animal in various ways.
"Displacement" is the most important aspect of imaginary play to understand. That is, the child does not label the situation, especially the characters as specific real people in his or her life. This allows the child to express various emotions that might not be acceptable to the actual person (often a parent) who is central to the situation being enacted. In imaginary play, a child finds safety in the distance created by displacing real events into a drama that he or she doesn't have to acknowledge as representing his or her actual ideas and feelings. This is "pretend," but it is pretending with a purpose. It is usually best not to question a child too closely about the action, but just observe and stay focused on the "imaginary" drama rather than relating it too directly to reality.
Children "work through" difficult material remarkably well by means of this kind of play. As a parent, you can sometimes suggest possibilities to the child as a way of finding "solutions," or discuss the difficulty the animal is in; remember that it is most helpful to stay in the metaphoric frame that the child has set up and not to refer directly to the life situation.
HOW DO I EXPLAIN HAIR LOSS?
The most difficulty will probably occur around reactions that your child might keep secret. For example, there may be "shame" or "embarrassment" about having a parent who is bald. Children do not like to be different from their peers, so having a bald parent will force them to be noticed in ways they don't want to be noticed. This may seem egocentric, but it would be typical of young children and even adolescents. You might not find out about this response right away and could easily feel "hurt" by it. By accepting it – or any response – as normal, you can help your child adjust to the change.
WHAT IF YOU HAVE CHILDREN OF DIFFERENT AGES?
Teenager's worries may, at times, be more difficult to address than a younger child’s. This is because adolescents typically hide themselves more, requiring more direct discussion to pin-point their concerns. Often teenagers act out in ways that can be hurtful to their parents. In fact, with teenagers, the most helpful thing you can do is, through discussion, encourage them to name what they are feeling. This requires persistence. Also, although boys and girls often differ in their ability and willingness to put their feelings into words, using language to master feelings is the key to avoiding harmful acting out. Distinguishing, for example, between "sad," "scared," "angry," or "confused," can be surprisingly helpful.
The main thing to keep in mind is that, under emotional stress, children of any age tend to "regress," which means they revert to younger forms of behavior. Expect your children to feel less independent and need more reassurance than normal. This can take the form of dependence or clinging, sadness, anxiety, listlessness, loss of focus, or anger. The chief difficulty for the parents will be that just at the moment you need them to act more independently and "grown-up," they will demand more attention. The normal family routine has been upset in a frightening way and this inevitably causes children to "act out." You should see this as a cry for help, not as "being bad."
SHOULD I TELL MY CHILD'S TEACHER?
A teenager should be asked what he or she would prefer. The surest way to offend teenagers is to do something without consulting them first about what they want. But don't take a teenager’s first reaction to be definitive, which may take the form of a simple "No way!" or an "I don’t care!" shrug. Finding out what is really bothering him or her is important and can lead to discussing more fully what the pros and cons of informing the teacher might be.
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