This blogpost came up in conversation recently so I’ve decided to re-post it. While there may be exceptions, in general I firmly believe it’s important to be open and honest with children about serious illness (in my case it was cancer). Not only is it important to explain it to them to de-mystify illness, it can also be crucial that children be aware of the condition in case of emergency. For example, if a child is alone with a parent who has a medical condition and the parent loses consciousness or injures herself, the child can call 911 and provide important information about what might be the cause for the problem. Similarly, people with metastatic cancer may have daily medical issues that are ongoing. Chemotherapy that is chronic, repeat surgeries, severe side effects, and more frequent tests and appointments may mean hiding a diagnosis is probably not even an option. Metastatic cancer patients may view withholding information as a luxury they do not have.
Using the real words to name our diseases/conditions can also be important for children’s knowledge of their family medical history. I have heard stories of women diagnosed with breast cancer who only learned of a family history of the disease after their own cancer was diagnosed. Only then did information come to light that relatives had also had the disease. Perhaps knowledge of a familial history of the disease would have been useful at an earlier time and monitoring could have begun sooner.1
…………………………….
I met a woman who told me something shocking.
It wasn’t that she’d had breast cancer.
Or had a double mastectomy with the TRAM flap procedure for reconstruction.
Or that she’d had chemotherapy.
What made my jaw literally drop open was her statement that she has never told the younger two of her four children that she’s had cancer.
Ever.
Not when she was diagnosed.
Or recovering from any of her surgeries.
Or undergoing chemotherapy.
She never told them.
To this day– five years later– they do not know.
I like to think I’m pretty open-minded. But I confess, it took a lot of self-control not to blurt out, “I think that is a big mistake.”
I’m a big believer in being open and honest with your children about having cancer. My caveat, using common sense, is that you should only give them age-appropriate information.
When I was diagnosed with breast cancer Tristan was six months old. Of course he didn’t understand what cancer was. Colin, age 5 at the time, understood some of what was happening. I explained to him what cancer meant, that I was going to need surgery to take the cancer out, where the cancer was, what chemo was, what it would do to my appearance and energy level. Using words like “I will be more tired than I usually am. I might feel sick to my stomach and need to rest more” explained things in words he could understand.
Age 8 and the oldest at the time, Paige understood the most when I was diagnosed. She had bigger questions and well as concerns about me (“Will I get it too? Who is going to take care of us? Are you going to be okay?”).
It’s not that I think small children always understand everything. But they are certainly able to sense that things are not “normal.” They can tell when people are acting strange. I think it’s important that they know there is a reason for that change. Children have a tendency to be egocentric; they think that everything is their fault. They may think they have done something wrong if everything at home feels different.
The woman told me she didn’t want to worry her children. She thought it “unnecessary” to tell them. She said when they got older she would explain it. I argue that by keeping her cancer a secret, she runs the risk of doing the opposite: making cancer seem scarier and more worrisome.2 If children hear words like “cancer” casually in conversation as they grow up they will be comfortable with them; in that way, they won’t be frightened of them. If they understand the truth of the diagnosis and treatment they are dealing with reality. By hiding the truth, the unintended consequence is to make it seem worse than it is. By not telling children, and waiting until they are older, it reinforces the idea that cancer IS something “big and scary.” After all, if it weren’t, you would have told them already.
I think being secretive is a step backward to the days when cancer was only talked about in hushed tones: the “C” word or “a long illness.” These concepts might seem primitive to us now, but it wasn’t long ago that these vague labels were the norm. By showing our children, our friends, our neighbors, that we can live with cancer, live after cancer, we put cancer in its rightful place.
To me, the deception that goes on to lie to children about where you are going, what you are doing is lying about a fundamental part of your life. Cancer isn’t all I am — but it is a part. And it’s an important part of my medical history. If for the past 3 years I’d covered up where I was going and what I was doing, the web of deceit would have been extensive. I can’t (and won’t) live a life like that.
Further, I think it’s a poor example to set for my children.
Lying,
covering up information,
and omitting important information are all wrong.
With rare exception, the truth is always best.
Presented in the proper way,
commensurate with a child’s age,
a difficult situation can be not only tolerable but surmountable.
It takes work. It takes parents who can manage not only their own emotions about having cancer but also be involved with helping their children cope with it. It’s more work, but it’s worth it.
I think that woman made a mistake. I think her decision was harmful. I am sure she thinks she was doing her children a favor. I totally disagree. I think keeping this type of information from children “in their own best interest” is rarely– if ever– the right thing to do.
- usually screening recommendations are different if there is a family history [↩]
- She decided to tell them that she was Christmas shopping, not staying in the hospital to recover from surgery. She made up reasons why her torso hurt and why she couldn’t lift them or heavy objects [↩]
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I 100% agree with you. To be a complete nerd and quote Harry Potter, “It is the unknown we fear when we look on death and darkness, nothing more.” Kids can tell something’s wrong, but if you don’t tell them what then they won’t know why. And not knowing is scarier than cancer itself.
My dad’s cousin had cancer for three years, but we only learned about it the day he died.
My children were grown, my youngest had just left for college. It never occured to me not to tell them, and I do have to say that I think the news brought them all closer together.
I do remember one conversation with my youngest. She wanted me to tell her that I would not die. She was crying and begging for it, actually. I remember looking at her, and for a second I wavered. It would be so easy, and so comforting to her to hear the lie. I took a deep breath, and I told her that while I was assuredly not dying that minute, I could not guarantee that the cancer would not come back. That I could not guarantee her that it would not, in the end, win. It’s just one of those things that you look at squarely, and make up your mind to use the time that you do have as wisely as you can.
Talking to the children is the hard part, but it puts such stress on you not to be honest.