The diagnosis of a chronic and/or life-limiting illness in a child can overwhelm a family. While parents are coping with their own grief and fears, they also have much to learn and many decisions to make. One of the biggest challenges they face is how to talk to the child about the illness.
Every parent I have worked with in this situation has had the same basic goal — to protect their child from pain. But every family has different beliefs about how to do so. Some decide to protect their child by sheltering them from any information they think may be painful. They don’t share the name of the illness, the reason for going to medical appointments, and often gloss over any questions the child might ask when they notice they are a little different than their friends. These parents believe that shielding the child from information leads to less worry and pain. Other parents sit their child down, explain the basics of the diagnosis, and then never refer to it again. They think the child deserves to hear the information but fear mentioning it again will only make the child upset. Still other parents tell their child everything they can possibly understand about the diagnosis and bring up the topic often. They believe the child should know it all and want them to feel comfortable talking about it with their parents.
These are only a few examples, but it’s clear that every family has their own style and beliefs. None of them are absolutely right or wrong. Each situation is different, and parents are experts on their own children. But no one is an expert on parenting a child with a serious illness or disability until they find themselves in the situation. There is often no warning and certainly no manual telling them how to handle the many challenges they will face. Though every parent starts with the best intentions, many families later wish they had taken a different path.
I met L and his parents a few years ago, when L was 12 years old. L was diagnosed several years before with muscular dystrophy, and he had recently transitioned into full time use of a wheelchair. I spent time with his parents, who told me that L didn’t know the name of his diagnosis, having been told only that his legs did not work well. They feared that if he knew anything about his disease, particularly the expected progression of weakness and likely shortened life span, he would be devastated and unable to cope. While I’ve met many parents who have chosen to shield their children from some of the painful realities of muscular dystrophy, it struck me that in this case, L likely knew a lot more than his parents realized. He was clearly a very bright kid who even described himself as a “science guy.” It was also hard to imagine that he didn’t know he was sitting in a clinic for neuromuscular disorders. I gently broached these possibilities with L’s parents, but they insisted he had no idea and they were happy with it that way.
During the next visit, L’s parents agreed to let me meet with L alone as long as I didn’t mention muscular dystrophy. As we began to talk about what life is like for him in a wheelchair, L confided, “I know I have muscular dystrophy, but I don’t know exactly what kind. Can the doctor tell me?” He continued by saying, “please don’t tell my parents that I know, because it will make them upset and my mom will cry.” It was such a poignant moment for me. L and his parents were working so hard to protect each other from pain, and in doing so, they all felt burdened and alone with their own fears and sadness.
Certainly talking openly about L’s disease would not have erased any of that pain, but it would have taken away the tremendous stress of tiptoeing around something that was so clearly on all of their minds. While the parents’ understandable goal was to keep L blissfully unaware, they inadvertently left him alone with his fears. Without intending to, their decision to keep information from L sent him a message that he could not ask them questions or talk to them about his disease. When we were eventually able to bring L and his parents together, his parents were devastated that L was holding so much emotional information on his own. Opening up the lines of communication was not easy, but it led to less stress and more connection for all three of them.
As I said, every family is different and needs to find a style that will work best for them. Here are a few tips I’ve gathered from working with many families who seem to have found meaningful ways to manage chronic illness:
Provide information based on developmental stages. A 5 year old will not likely understand the physiological details behind type 1 diabetes, but they can often understand that their body deals with food differently than most people.
Let the diagnosis be a piece of your child’s life story. One mother explained to me that she chose to talk about her young daughter’s diagnosis in the same way she talked about her adoption. Her goal was to never need to have one huge conversation explaining the illness to her daughter. Instead, it was discussed casually at various times and simply became a part of their lives.
Children will often tell you exactly what they want to know, and it is important to clarify their questions. A dad once mentioned that he had been anticipating questions from his son about his muscular dystrophy. One day in the car, the boy said, “Dad, why can’t I do anything everyone else does?” While the dad assumed his son was referring to his muscle weakness, he was actually upset that his older siblings were allowed have later bedtimes.
Create an atmosphere in which your children feel comfortable coming to you with their concerns, but also let them know it is ok if they’d also like to talk to another trusted adult. Many adolescents have told me they know they could talk to their mom or dad about their disease and even feel comfortable doing so, but they also appreciate connecting with an “objective” person.
Follow your instincts, but don’t be afraid to ask for help. As mentioned earlier, there is no manual for parenting children with chronic health conditions. You know your child best, and you will figure out what works best for your family. But please also reach out for help and guidance, as many people have been where you are and can provide much comfort and advice.
If your family is facing a chronic medical condition and needs additional support, education or insight, contact Amy through this website or at Amy@insightnewton.com.
