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Invisible, yet marked
29/05/2026
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
“People couldn’t see what I had been through.”
“You think they couldn’t see anything?”
This exchange with my therapist more than ten years ago has always stayed with me. For a long time, I carried my illness — treatment for a brain tumor at the age of four in 1980 — like an invisible secret.
Yet I remember a friend at university once telling me, after I had shared a little about my past: “You can tell you’ve been through something.” That stayed with me. But at the time it was not enough for me to really understand it.
For many years I was convinced that my illness was invisible. Because of that, I could not imagine that it might lead to stigma.
But stigma itself was something I knew. My first and last name were very socially marked, and I often felt I had to make myself small so as not to stand out too much. My parents were practicing Catholics, which in public schools in the 1980s could also expose you to judgement. We simply avoided talking about it. Everything in the way I dressed or spoke revealed a social background that many of my classmates did not share. […]
Later, another question emerged: could my illness itself have been a cause of stigma?
In 1984 I stopped growing and was treated with growth hormones. I come from a family of very tall people, but I ended up just under 1.70 meters. That was never really a problem for me, but for my mother it felt like a tragedy. My therapy later helped me understand that my height was my mother’s drama, not mine. […]
A more confusing awareness of stigma related to my illness appeared later. In 1986 I had hemiparesis and had to miss school for some time. When I returned, I was placed in a class with students who were already considered to be failing at school. I was too young to understand it then, but my mother understood very well: I had been labelled as “beyond recovery.”
Most of my classmates were interested in sports, and I struggled to keep up. The sports teacher was not kind and sometimes mocked me. Eventually my parents wrote notes and I stopped attending sports classes.
[…]The episode with sports made me aware of my motor difficulties and created a lasting feeling of inadequacy. I never talked about it with my mother, who was always focused on my height, while that was not really the issue.
Like many teenagers, entering high school was an important moment. And during my final year, I discovered what would become the great love of my school years: philosophy.
After high school I became something of an unconventional character, accepted in many circles for my originality. My illness was part of that identity, though I was not always fully aware of it. Looking back, I remember my twenties as a joyful time.
Yet during that same period I also experienced the most stigmatizing moment of my life. Around the age of twenty-five, during a ski trip with friends, I clearly realized my physical limitations. I could see that I was being compared with other men and quickly dismissed. It was painful, even though I was not particularly interested in the girls involved. For the first time, I clearly connected this physical limitation to my illness.
Later, in my thirties, perhaps partly as a way of compensating, I started writing.
There are people who do not stigmatize others, and there are fools. The world is like that. I have always connected easily with foreigners and with people who felt a little different. In the end, my difference became a way of sorting people out.
Anonymous patient, France
2
As a pediatric oncologist, I meet children and families at some of the most vulnerable moments in their lives. I am trained to diagnose cancer, follow protocols, and manage complications. Over time, however, I have come to understand that what matters most is not always what is visible, and that even subtle late effects can shape a survivor’s life in profound ways.
This has changed the way I practice. Today, I recognize things that might otherwise go unspoken or be easily missed. When a teenager feels “different” in a way that is hard to define, I am reminded that illness leaves traces that extend beyond what we routinely measure in the clinic.
At the same time, my experience has also taught me something else. Difference is not only a vulnerability. For some survivors, it can become a way of navigating the world — of recognizing openness in others and of forming meaningful connections in ways that are not always immediately visible.
Prof. Jelena Roganovic – Pediatric oncologist – Children’s Hospital Zagreb, Croatia
3
As healthcare professionals, we are trained to look for what can be measured or seen. But some of the deepest consequences of childhood illness remain invisible for years — sometimes even to the person themselves.
Feelings of difference, discomfort, or invisibility are more common than many people realize, even when the illness itself is no longer visible.
Over time, some people find ways to reconnect with themselves through art, sport, music, writing, family, friendships, job, association or simply through meeting people who understand what they have lived through.
For others, this process can take much longer.
Periods of feeling lost, disconnected, or out of place can sometimes last for years.
Little by little, however, some people manage to reconnect different parts of their story and rebuild a sense of self.
And sometimes, asking for help — from relatives, other survivors, psychologists, associations, or healthcare professionals — is not a sign of weakness, but one of the first steps toward moving forward.
Schweizerische Eidgenossenschaft