BETHANY Hart lives with her husband, son and three dogs in Indianapolis, USA. She survived cancer of the cervix and on Cancer.Net – a site that the American Society of Clinical Oncology (Asco) dedicates to patient information – tells his experience.
Bethany does not list all the stressful, painful, anxious appointments for analyzes, interventions or controls faced and, in her case, overcome: instead, she entrusted the web with the story of her sense of guilt as a survivor, that is, of that particular feeling negative that sometimes afflicts those who overcome the disease. Of that emotion that creeps into the mind and forces you to think: Why am I healed and my friend is not? Why did I react to the treatment while the tumor killed my bed neighbor in the hospital?
L’autocensura
When the oncologist tells her that she is free from cancer and asks her how she feels, she – she says – cannot be really honest: she says that everything is fine, great. In essence, it censors itself. He does not say that because of the treatments he does not feel well, that he has pain, discomfort and that he does not forget the mental and physical stress he has endured. “What do I do? I complain? Do I really have to rattle off everything that bothers me? – Bethany thinks in the doctor’s office as she replies that everything is fine – How could I list all the pains I still feel from the treatments when so many people are worse off than me? I walk well, why should I talk about the pain in my hips? How could I tell about the anxiety of cks or the fear of relapses, when the scans no longer show signs of illness and so many people I know are battling relapses instead? My oncologist would think I’m crazy. Why should I complain about something when I am alive and so many others I have met in the support groups or in the hospital are no longer? (…). All people with so much life ahead of them, crushed by cancer ”.
Mourning and injustice
As we anticipated, it is the guilt of the survivor, that of Bethany. And she is not an isolated case, rather a paradigmatic case, because the feeling of guilt is not uncommon among cancer patients who have been cured. “Cancer patients develop very intense emotional bonds with the people who have shared their path – he explains Anna Costantini, director of the Psycho-Oncology Operational Unit of the Sant’Andrea University Hospital in Rome – even if they are not old friends, but people with whom they exchanged words, emotions, with whom they shared a room of hospital, or a waiting room or day hospital during treatment, or who they met in a self-help group. When some of them know that another has not made it, as well as a bereavement, because it is a bereavement since we are talking about strong ties, they also feel a sort of sense of existential injustice “.
Mourning and existential injustice. Let’s talk about negative and intense emotions, it is no small thing. But are these emotions overcome over time? “Yes, over time they are overcome – the expert resumes – sometimes with commitment, with relaunching meaningful activities in their lives: many, more often women, ask to be volunteers in order to give others what they have received good. them, reinvesting in their ability to give meaning and meaning to life ”.
The guilt of the diagnosis
As paradoxical as it may seem, the painful feeling of guilt not only creeps in at the moment of recovery, but pollutes thoughts throughout the course of treatment, starting from the diagnosis. “At least 50% of cancer patients and up to 90% experience feelings of guilt, starting from the moment of the discovery of the disease and during the course of treatment – confirms Costantini – with different problems and aspects. Cancer is a disease that is in part different from others, because many of the mechanisms at the origin of tumors are still under study. It also represents one of the diseases that have the greatest impact on the population. These two elements make it possible to arrive at the diagnosis already with an idea of what a tumor is, which is more or less realistic. For many years, there has been some success in thinking that inappropriate lifestyles, such as smoking or a free sex life, for example, or emotionally stressful experiences, such as a history of frustrating relationships, cause cancer. As if there was an automatism. An automatism that is not there, of course, but which at times leads us to think that we are responsible for our own illness ”.
A sense of guilt, or responsibility, devoid of certain scientific bases, but also a normal reaction, however, because after all, when we all experience a traumatic event that we do not explain, we need a certain cognitive control. “And sometimes, paradoxically, attributing a cause to something we can’t make sense of gives some form of control over the situation. Even if it’s a boomerang ”, warns Costantini.
The importance of listening to patients
“It’s a boomerang – he continues – because the sense of guilt has consequences. It is documented by research that feelings of guilt can lead to denial of physical symptoms, to feelings of inferiority, to inadequacy, to withdraw into oneself, but above all, the sense of guilt causes depression or is accompanied by depression. And depression is a risk factor, because it pushes people to treat themselves worse, to skip visits, to neglect nutrition. It is easy to understand how important it is to quickly catch the signs of guilt in patients, for example by looking at expressions such as: ‘what would have happened if I had done …?’, ‘How would it have gone if I had not done …?’, ‘ why didn’t I follow the doctor’s advice? ‘ The patient must be listened to and given all the time to reveal himself in his feelings and thoughts, in this way it becomes easier to grasp and correct preconceptions and false interpretations of his condition. It is also useful – adds the psychologist – to provide realistic, scientific but simple information on the origin of the disease ”. And how can the sick help themselves not to fall from the false interpretations of cancer? “By becoming aware that the feeling of guilt is frequent, that they are not alone, that what they feel is extremely human but counterproductive”, the psychologist replies: “Nobody causes the disease. The idea of having obtained it is an unbearable anguish, which cannot be acceptable ”.
The sense of guilt towards family members
Patients who feel guilty for the embarrassment they cause in their children or spouse for no longer having a socially acceptable physical image. Women who lose their hair from treatment and who are ashamed of going to pick up their children from school. Or who have lost the desire to have sex with their mates and are afraid of inflicting a heavy sacrifice on those they love. Family fathers “guilty” of not being as productive at work as they were before chemo. Men and women under the weight of the thought of the sacrifices they force their children, perhaps adolescents. All these negative thoughts – experts say – are very frequent, especially among those with a chronic disease. “These patients – advises the specialist – should be reminded how much they gave to their family before they fell ill, which is a lot. And that for family members it is a great benefit to be able to return all the good they have received: children, spouses are powerless in the face of cancer, they cannot do anything. So taking care of those they love, their mother, their father, their lifelong partner is a gift they want to give, which they gladly give “.
The metaphor of the warrior
There is a very common metaphor concerning cancer: that of the warrior. The cancer patient is like a warrior, cancer is like a war, cures are like weapons, and so on. The fact is that, although this disease, like others, actually looks a bit like a war, not all cancer patients can, or should, feel warriors: many fail to be reactive, many suffer from treatments badly. Is there no risk, truly paradoxical at this point, that in addition to having to endure a serious illness, these patients may also feel guilty or angry because they feel tired or depressed, because they don’t fit the warrior model? “The risk is that these people may think that their depression can make the disease progress – explains Costantini – so the warrior metaphor can be transformed into yet another boomerang. No one is responsible for his illness and how it evolves, whether he dies of cancer or continues to live ”.
.