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Feeling Like An Exception
21/09/2026
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.
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I am 47 years old and was treated at the age of 5. I underwent a very heavy chemotherapy protocol for that time.
After more than a year of hospitalization, I was declared “cured.” But at that time, the physical and psychological after-effects, although very present, were completely ignored by the medical world. As a result, those around me (family, school, social environment) could not be aware of them.
At that time, I would have needed consultations with professionals (psychologists, psychomotor therapists…). But this kind of care was not considered, and sometimes did not even exist. Deep inside, I felt that I was not really and completely “cured.”
The stigma of being a former pediatric patient, in this context, turned out to be a reality that appeared at different moments, especially during youth, the period when a person builds the foundations of their identity.
More precisely, because childhood illness affects only a small percentage of children, compared to the general population, as a former patient we have followed a path different from the usual one, which sometimes creates a feeling of being out of step with others.
If you are young, if you are a boy, society considers—often unconsciously—that you should be strong, physically robust, and full of health… This leads to many misunderstandings with others. It resulted in major difficulties in self-confidence and self-esteem, withdrawal into myself, and doubt (did my treatments really cause after-effects, or am I imagining it? Are my difficulties my fault?).
I still followed a normal school path and was even a rather good student. The treatments did not affect my intellectual abilities. I could even say that the experience of childhood illness gave me certain strengths: a form of maturity compared to other children (as if I had grown up too quickly), and a certain mental strength (coexisting most of the time with a rather low mood).
But at school, the problem was physical education. I was always last, far behind everyone else, boys and girls alike, without really understanding why. This was very difficult for my morale and self-esteem.
Some everyday actions were difficult at first, like tying my shoelaces or opening a can… All the learning we usually acquire during childhood—riding a bike, learning to swim, learning to drive… everything that required coordination and/or physical strength… With sometimes disapproval from others, whether family or teachers, who could think that I was doing it on purpose or not making enough effort.
Leisure activities were also affected. Many activities were not accessible to me, especially those with a physical dimension. Even activities like theatre, which require coordination. This led to a tendency to feel excluded and to withdraw into myself, whereas these activities are important for personal development and social integration.
In another aspect, it also appears that society, more broadly, does not always consider former pediatric patients well. This is where the notion of stigma becomes more visible.
To illustrate this, in certain contexts, there is an assumption that a young person naturally has the physical capacities required. When treatments have reduced us physically and/or psychologically, even if we may be exempted, we can still feel on the margins, like an exception to the rule.
Another example is access to loans and insurance. Sometimes an additional cost is imposed on former patients. It can feel as if we are being penalized, even though we are “cured.” These decisions are based on assumptions and projections rather than on objective elements.
In the professional environment, it is not different. At the beginning, I was told not to talk about it, that it could be poorly perceived. But at the same time, in my early career, I had difficulties: my attitude, sometimes less energetic (a consequence of treatments), could be interpreted as a lack of motivation or attention.
More generally, many training paths or professions remain inaccessible to former patients with after-effects, which limits opportunities.
At the same time, I see myself as someone who has overcome something. I consider myself strong for having gone through childhood cancer. But on the contrary, sometimes it feels like something that should be hidden, almost something to be ashamed of.
Arnaud T, patient, Les Aguerris association, France
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Arnaud’s story illustrates how complex the long-term impact of childhood cancer can be. Survivors may experience physical, cognitive, emotional or social late effects, sometimes many years after treatment.
At the same time, some survivors, including Arnaud, also describe positive changes, such as greater maturity, a deeper appreciation of life or a stronger sense of personal strength. This is sometimes referred to as post-traumatic growth. It does not mean that difficulties disappear: strength and vulnerability, positive changes and ongoing challenges can coexist.
If some aspects of Arnaud’s story resonate with your own experience, discussing them with your healthcare team may help identify appropriate support, such as physiotherapy, rehabilitation or psychological care. It is okay to ask for help.
Dr Anne Maas, Researcher in psychosocial aspects of childhood, adolescent, and young adult cancer survivorship. Faculty of Health Sciences and Medicine, University of Lucerne, Lucerne, Switzerland
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Arnaud’s story also highlights an important aspect of childhood cancer survivorship: some difficulties experienced later in life may be related to the cancer or its treatment without survivors necessarily making this connection themselves. Recognising and discussing these possible links can be an important step towards understanding what someone is experiencing and identifying appropriate support. This is one of the reasons why long-term follow-up can be valuable for childhood cancer survivors. It provides an opportunity to identify possible late effects, address them when appropriate, and support quality of life and personal, social and professional well-being.
Dr Claire Berger, Public Health Department. Team PRECOCE (Prevention and REsearch for long-term COmplications after Childhood cancEr). University Hospital, Saint-Etienne, France
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Who decides what “normal” looks like?
Arnaud’s story made us reflect on something that can happen when living with the visible or invisible consequences of cancer: the way others see us can gradually influence the way we see ourselves.
When you cannot run as fast as others, when you have less energy, when your body looks or works differently, when you need more time or support, or when your life has simply followed a different path, people around you may not understand why. Sometimes they may think you are not trying hard enough, that you lack motivation, or that things would be easier if you could just change.
These reactions are not always intended to hurt. They may even come from people who genuinely want to help. But when the same expectations are repeated over time, they can become difficult not to internalise. You may start comparing yourself with others and wondering: Why can’t I do what they do? Am I trying hard enough? Is something wrong with me? Should I hide this part of myself?
This is where the question of what we call “normal” becomes important. Normal according to whom? According to which body, which abilities, which life experience?
A childhood cancer experience can leave physical, psychological or social consequences. These may sometimes require care, rehabilitation or support. Accepting yourself does not mean giving up on improving your health or asking for help. Nor does asking for help make you less independent or less strong.
Perhaps it means something different: learning to recognise what belongs to your own needs and wishes, and what comes from the expectations of others.
You can want to regain strength because it matters to you. You can seek psychological support because you want to feel better. You can work on something that is difficult for you. But you should also be able to decide that some parts of yourself do not need to be “fixed” simply because they do not fit someone else’s idea of normal.
Your history is part of you, but it does not reduce you to what happened to you. Your limitations do not cancel your abilities. Needing support does not cancel your autonomy. And being different does not mean being less.
Learning to see yourself through your own eyes rather than only through the expectations of others can take time. You have the right to understand your own story, to recognise both your vulnerabilities and your strengths, to ask for help when you need it, and to decide for yourself what moving forward means.
And this reflection is not only for survivors. It is also for all of us — relatives, healthcare professionals, teachers, employers and society. Instead of always asking people to adapt to what we consider normal, perhaps we should also ask ourselves:
How can we make more room for different bodies, different abilities and different ways of living — so that no one has to become more “normal” to feel that they belong?
Schweizerische Eidgenossenschaft