The Social Gap

This article is part of the “Healing in Two Voices” series developed within the e-QuoL project, which brings together survivor voices and professional reflections on life after childhood and adolescent cancer.  In this series, professional contributions do not aim to add explanations or conclusions. They create spaces for reflection — ethical, psychological, and clinical — opened by the testimonies themselves.

1

I remember very clearly the first day I felt out of step with others. It was the very first morning I returned to middle school after my illness.
At school, beyond the mental gap, the physical difference was immediately visible: the crutches, the fragile body, the regrowing hair… I was clearly identifiable as the one who had just come back from the hospital.

Then, over time, my body recovered and my hair grew back. In high school, even though I was still thin, outwardly I looked more like everyone else. One day, when I told a classmate that I had had cancer, he did not believe me. I had to show him my scar for him to understand that this past was real.
And yet, even when nothing was visible anymore, the gap remained.

I felt both ahead of others and behind them at the same time. Ahead because I had already experienced things that usually belong to adulthood — a kind of early maturity. But also behind, because socially I had not developed during the year I spent in the hospital. I even had the feeling that I had gone backwards, that I had lost some of my ability to socialize. Light conversations sometimes felt distant. I was not isolated, but I rarely felt completely in my place.

Over time, this gap did not disappear. It transformed.

Even today, I speak little in group settings. I can feel comfortable one-on-one, but in group conversations I often feel more like an observer than a participant. Sometimes because the topics do not interest me. Sometimes even when they do, I am not sure what to add. I rely a lot on intuition and feelings. I do not like debates, negotiations, or power dynamics. I find it difficult to play a social role simply in order to fit in.

Recently, in Mauritius, I spent time with friends of my partner. I stayed rather quiet and in the background. For them, this might have seemed like distance or disinterest. In reality, I was simply being true to who I am. I do not know how to pretend to be interested. I prefer silence to superficiality. That does not mean I do not like people, but I need time to get to know them. This way of being can sometimes create misunderstandings.

Today, I no longer try to erase this gap. It is part of who I am. It has taught me to listen, to put things into perspective, and not to be carried away by noise. It has also forced me to accept that people may sometimes misunderstand me.

Illness sometimes leaves invisible traces — not only on the body, but in the way we relate to the world. This gap does not prevent a happy life. It simply makes it different.

Arthur Kayser, a French survivor

2

Living through a cancer diagnosis and treatment challenges not only the body, but also the mind and psyche of affected children and adolescents.

Especially during adolescence — a period in which young people normally strive for independence from parents and other adults and begin to develop their own worldview — the cancer experience represents a profound disruption. Suddenly, the young person becomes dependent again and must follow rigid rules in order to survive the disease.

Under usual circumstances, adolescents rely on their peer group to discuss opinions and explore what they perceive as right or wrong. However, many cancer treatments lead to periods of isolation during hospital stays and vulnerable phases caused by treatment-related side effects.

Adolescents also typically feel invincible and immortal. Cancer confronts affected young people with the opposite reality.

The ever-changing body and the omnipresent images of the “perfect” body already represent a challenge for many adolescents and young adults. Scars, hair loss, and weight loss can further exacerbate the feeling that one’s own body is not good enough.

All of these circumstances can lead, on the one hand, to psychological growth, but on the other hand to a healing process that may last a lifetime. As interprofessional teams, we try to support our patients throughout these processes.

Eva Maria Tinner – a Swiss paediatric oncologist