By Anaïs Montagne, clinical psychologist – HFME Hospital – Lyon
The diagnosis of a disease like FIRES represents a traumatic event and parents never forget the moment they receive the news. After a period of doubt, fear, and uncertainty, this announcement marks a distinctive break, before and after the diagnosis. The realization of the diagnosis will not only be the cause of heightened anxiety but also disrupts family plans, it challenges the life of the child.
State of Shock
Once the diagnosis is given, it may come as a real shock and bring different psychological challenges for the parents. At first, a state of shock, then other mental considerations begin to manifest. The parents must face the frustration that prevents them from living in their daily lives. They can often think that the past and the future will be nothing like it was thought to be. There is a phase of denial, then a rejection of the diagnosis as it’s too difficult to accept and includes the feelings of outrage, injustice, and a difficulty to understand how all the people responsible for finding a cure, a treatment, haven’t been able to do so.
Expressing their suffering
Following this, the parents can begin to express their state of suffering. This phase allows for the expression of intense emotions such as fear, death anxieties, and the feelings of not being able to come to terms with the situation. This period is essential and allows the significant psychological healing of mourning for a healthy child.
Expressing emotions differently
In many situations, and which can often be the most disorienting for the parents, is to see within the couple, living in the same situation, going through the different phases but not at the same time or in the same way. Emotions can be more intense in one, and more internalized in another. It’s crucial that each manages with their own emotions and accept that their partner may cope with their emotions differently.
The diagnosis can provoke a terrible feeling of helplessness and guilt. So often we notice a loss of confidence in their role of being a parent, the feeling of having your child taken from you, and unable to succeed. It is, therefore, important for the medical team to progressively re-establish their place within the family, helping them to again be involved and support their child: to actively restore their role as parents.
Don’t isolate yourself
It’s crucial that you share your feelings and emotions with those closest to you. You mustn’t suffer alone and instead join together to overcome each stage and new information.
And the brothers and sisters …
When the disease interferes with family life, it is important to be aware of the siblings of the sick child. Depending on their age, understanding the situation can be different but it is essential that at any age, they are involved, informed and supported by the team, as well as, the parents.
Then, it’s time for the acceptance of the diagnosis. The time to learn more about the disease and begin the reorganization of daily life, to adapt. Living with the implications to the child- searching for solutions, the work ahead, and the desire to return to a normal family life- will allow a return of confidence, the will to fight and move forward. It’s a long journey but one that is necessary in order to progressively rebuild the future. Although the future is different from the one envisioned before the disease, but rather a future in which those surrounding the sick child can begin to put their doubts aside and look at the possibility of the projects and steps ahead.