The intervention of the psychiatrist Guendalina Rossi at the Viareggio course

di Laura D'Ettole.

“The diagnosis of a pathology such as hypertrophic cardiomyopathy is like an earthquake that upsets the balance of the person receiving it and of his entire family environment”.

Guendalina Rossi - Viareggio

Dr. Guendalina Rossi

This is how Guendalina Rossi, psychiatrist and psychotherapist, made her debut, speaking at the "Training course for expert patients in hereditary myocardial diseases" organized by Aicarm in Viareggio (28/1/'23). The concept of "expert patient" is fundamental today for the scientific community, it implies that treatments are all the more effective, the more those who receive them show awareness of their condition, not only from a clinical point of view, but also from a psychological point of view. For this reason Guendalina Rossi's intervention, centered on that complicated interweaving of acceptance and rejection of the disease, was one of the most eagerly awaited by the patient audience.

"We realized that the impact of the diagnosis is really very different depending on the age of life in which it occurs," says Rossi. Children, tweens, adolescents or adults have very different and incomparable reactions.

Children don't "know how they are". “They are born with certain physical sensations and grow up with a body that works that way.” They have no terms of comparison. It is of little use to ask them how they feel, because they cannot express it. Instead, it is useful to start a dialogue in which they learn to describe their body precisely, their sensations when they do something. Encourage them to draw, to express themselves through play. When the diagnosis concerns a child, the pain that upsets the parental couple is very acute. “Who is to blame for the transmission of the gene?” the father and mother begin to wonder. This cumbersome secret, often unspoken, cannot and must not remain a taboo, it must be brought to light. The couple must be helped and followed along this path to ensure that it also becomes an effective support for the child.

The thing is very different when the diagnosis falls in that age of life in which the contrasts are heated and decisive: adolescence or pre-adolescence. The young patient can sometimes show unpredictable reactions that oscillate between anger, rebellion or gloomy resignation. In this case: "It can be very useful for the dialogue between doctor and patient to take place in a two-doctor-patient relationship". In this phase, children are experiencing their first experiences of autonomy, of adult life, and the space for parental control is greatly reduced. “Pre-adolescents and adolescents go through an initial period of acceptance of the diagnosis and also of the therapeutic indications”. But they have difficulty submitting to limitations, such as that of ceasing sporting activity at a competitive level, for example. "We know that often the boy you tell him not to play football in a certain way will suddenly go onto the pitch to really see what's going on, he'll want to try if what he's being told is... real or not". Maybe at some point she'll go off the drugs, and he'll never stop wanting to test the limits of his body. "For this reason, our experience has taught us that it is very important to allow a direct dialogue with the doctor in order to deal with various issues that may concern the freedom to move, to have sexual relations and to play sports, to travel". Or again, as far as girls are concerned, to address the very delicate issue of motherhood.

Certainly when a patient, whatever the age group, is told to stop playing sports, change their habits or insert a defibrillator, the earthquake is shocking. "What is happening corresponds to a mourning, to the loss of the fantasy that we all have, of having a perfect body, a condition of invulnerability".

Guendalina Rossi recalls the recognizable phases of the response to the shock of the discovery of the disease. There's a first stage where you say no, it can't be true, this thing isn't true! It is the denial of evidence that one does not intend to accept. Then follows the phase in which one is very angry, resentful because one cannot lose that state of well-being to which we are accustomed. “Then there is the moment of negotiation, yes I like this word, a phase of negotiation begins, a period of depression, then a state of sadness, a bit of nostalgia for what we have lost and, when it goes well, acceptance". Acceptance yes, which of course does not mean contentment with this new status, "but that the patient manages to incorporate this novelty into his own existence and rebuilds a new balance that takes into account the fact of having a disease that becomes your life partner" . A partner forever and from which she will never divorce. An armistice is signed with her, a peace is made that allows her to be accepted and to lead a livable life, even a pleasant one.