“If kids are normal, not sick, they like to be treated special. But if kids have a disease, they wanted to be treated normal.”
“Longing for normalcy” is a refrain of many children* after a diagnosis of illness. The child often refers to “normal” as how he or she was before the illness, and hopes to be once again. For children with a congenital or life-long condition, the longing is to be part of the “normal” world around them. “Being normal” for children includes being regular (not special), ordinary (not exceptional), and fitting in (not being different).
Children living with illness inhabit two worlds: the medical world and the wider world of “normal.” The proportion of time they spend in each of these worlds will shift constantly during the course of an illness. There are times where a child is so consumed by the intensity of illness and treatment that the wider world is only a distant, abstract concept. During periods when a child feels well, the medical world recedes, and they can enter that wider world to re-find their place. Most of the time, however, children “commute” between these worlds, an extraordinary challenge.
Missing out on normal life activities and events is an ongoing reality for these children. Normal life for children encompasses three overlapping spheres: family, school and peers. These aspects are all captured in an eight-year-old graphic and verbal description of his response to his diagnosis:
When I heard that I had leukemia, I turned pale with shock. That’s why I chose yellow – it’s a pale color. Scared is red – for blood. I was scared of needles, of seeing all the doctors, of what was going to happen to me. I was MAD [black] about a lot of things: staying in the hospital, taking medicines, bone marrows, spinal taps, IVs, being awakened in the middle of the night. I was sad [purple] that I didn’t have my toys and that I was missing out on everything. I chose blue for lonely because I was crying about not being at home and not being able to go outside. Green is for hope: getting better, going home, eating food from home, going to school and seeing my friends. (Figure l)
More than any other activity, school is the defining structure of every child’s day-to-day life. It represents constancy, a routine with a predictable set of rules and expectations. Far from their medical world, it provides a safe environment for learning and mastery.
Ten-year-old Katie vividly illustrated the importance of school. When I asked her what she had missed the most over the 4 years of her illness, she responded that attending school was what she missed the most (Figure 2) – both for learning and for seeing her friends.
How can families and professionals help children and adolescents who are in fact feeling very “abnormal” as they are missing out on many aspects of their lives? Following are a few broad guidelines:
- Be aware and sensitive to the importance of feeling “normal” – as normal as possible – for all children and adolescents living with illness. While we typically focus more on adolescents’ desire to “fit in,” even very young children are sensitive to being “different.” Help them focus on and remember what aspects of their lives – and of themselves – are still the same despite the illness.
- “Missing out on things” comes in two categories: (1) missing a specific, often special event or activity (e.g. a celebration, a trip) and (2) missing out on life in general (day-to-day daily life, in all its routine).
- Adults tend to focus more on the first category, in part because these are events that stand out from the backdrop of daily life. Allow the child to express disappointment / anger / sadness at the prospect of missing the event – do not try to minimize these feelings. After the event, it is very important to let children know that people asked about them and that their presence was missed. It makes the “missing out on things” a little more shared and less one-sided. When realistically possible, promise the child that they will participate in a similar event at a future time.
- The second category of “missing out on life in general” is more ongoing and subtle, and probably has more impact on adolescents than on young children. It is also harder to address, since it encompasses all the frustration and sadness of the impact of the illness. Most important is simply to listen to what the children say, without trying to distract them or “problem solve” or cheer them up. These are times that they may just want to be heard and to have their hardship acknowledged.
- Parents: Recognize that – along with so many other issues – hearing your children’s pain about “missing out” on life will engender vulnerability for you – for all that you wish you could have spared your child. Avail yourself of support (family, friend, professional) to mitigate your distress a little in order to best attend to your child’s.
* The word “children” is used to refer to a broad age spectrum including adolescents.
Barbara Sourkes PhD, a pediatric psychologist, is the Kriewall-Haehl Director of the Pediatric Palliative Care Program at Lucile Packard Children’s Hospital Stanford, and Professor of Pediatrics at Stanford University. In addition to many articles and chapters, Dr Sourkes has written three books and co-edited a textbook – all related to the psychological impact of illness on the child and family. She is the recipient of the 2011 Outstanding Clinical Care Award from the American Psychosocial Oncology Society; and the 2014 Humanities Award from the American Academy of Hospice and Palliative Medicine.