Francisca Cuadrado Ibáñez

 

From the day of our birth, we believe, as if it were something that could be determined by wish or will, that we are the authors of our own history and that our abilities and actions influence our future, and most importantly, that of our children. As soon as a child is born we imagine that he or she will grow up to be handsome and healthy, a strong athlete, a good scholar. Our children will attend university, they will enjoy themselves, and when they become adults, they will meet someone with whom they will form a family and they will grow old watching their own children grow up. This is the circle of life: a perfect harmony.

 

But it is not always this way.

“We have the test results and they confirm our suspicions. Your child has…”

The diagnosis of a chronic or high risk disease in a child suddenly robs parents of any control they feel they have over his future. Time seems to stop. All of their dreams vanish in an instant. Their child is sick.

It is no longer a question of whether he will grow up to be healthy, but rather whether he will even reach adulthood. He will not go to university, he will not be able to work or have a family. He will not be able to do anything. The parents’ world has been destroyed and they feel hopeless.

Everything is transformed by the diagnosis. Parents feel they no longer have control over their own lives, let alone that of their child. In an instant they have become vulnerable. People whom they have never seen before are making critical decisions about the future of their child. The parents no longer feel capable of protecting their baby, or themselves.

The illness is all-consuming, and, especially in the first days after diagnosis, there do not seem to be enough hours in the day to look after the child, attend to his emotional as well as physical needs, learn about his disease, notify friends and family about the situation, make decisions about work, and restructure family life in order to face the crisis. The harmony has been broken.

From the first moment the disease makes itself known, stress becomes a daily companion. Stress defined, not as a temporary condition of overwork or overexcitement as it is understood colloquially, but rather as a permanent state of tension of extraordinary levels which occurs in response to a specific situation, whether brief or prolonged, and which is usually harmful to the human organism.

When, to the initial shock of the diagnosis we add the possibility of hospitalisation, the difficulties inherent to the treatment of any serious disease, the new limits the disease imposes on the patient and his family (both physically and socially),

and uncertainty over the future, we can see how chronic illness becomes a permanent source of stress as much for the person directly affected as for his family members. A number of emotional reactions take hold: confusion, paralysis, denial, fear, hopelessness, guilt, anger, sadness. These feelings are particularly pronounced at the moment of diagnosis, but they reappear in different ways and to varying degrees, fluctuating throughout the course of the illness. What can be done to manage this seemingly unmanageable situation? How can one learn to live with such anguish?

 

Adaptation to the reality of a chronic disease, like the process of adaptation to any prolonged situation of extreme stress, occurs progressively. The help of family and friends and accommodations made in the workplace are just some of the resources available to those who face a situation of long-term illness. In spite of the external supports, however, the stress associated with a chronic malady is such that people who live with it must develop internal strategies for dealing with the challenges that the disease entails.

In particular, they must learn to employ mechanisms that help them manage things on a mental as well as a practical level.

Regarding this last point, literature on the subject distinguishes between different kinds of coping strategies: those based on the problem itself, aimed at taking action to face difficulties in an objective manner; those based on the sentiments, directed towards managing the inevitable emotional reactions; and positive assessment, which is aimed at recognising the constructive lessons to be learned from even the most difficult personal experiences.

The ability to employ different coping techniques at different times is very helpful in facilitating the process of adaptation and in the general management of stress caused by chronic disease. However, some evidence suggests that the use of strategies which focus on taking positive action against the problem itself (such as, for example, gaining greater technical knowledge about the illness, learning to handle it through available treatments, recognising the symptoms, sharing experiences and information with other people in the same situation through support groups and other associations) is a fundamental factor in the emotional adaptation to the fact of chronic disease. Regardless of the degree of illness specific to the case or the patient’s current clinical status, this approach appears to offer an excellent level of adjustment and may allow for the recovery of the lost familial harmony.

Given the importance of coping strategies in parents’ ability to adjust to the fact of their child’s illness and, in particular, the efficacy of problem-based techniques, let us examine how they may be applied to the adaptation to chronic disease in general, and in the management of the emotions it triggers.

 

One of the first emotional reactions associated with the diagnosis of serious illness is confusion and paralysis. The psychological and emotional impact that such news generates persists in the memory of the patient and his family for a long time. In their anguish, most parents are unable to recall anything of the initial explanations offered by the doctors with regard to their child’s illness, and in most cases are only able to remember small, but very specific fragments of information, often of a highly pessimistic nature.

The news that they receive creates a kind of emotional overload which in turn causes the immune system to form a protective layer that filters out all but the most essential data. Confusion and paralysis are the human organism’s natural response to catastrophe and serve to protect the mind and body from the consequences of over-stimulation by outside factors.

Giving voice to doubts when necessary, writing down the doctors’ instructions, or asking a friend or family member to help keep pace with the barrage of new and complex information regarding the health of the child, are a few ways to deal with the inevitable state of confusion in which parents find themselves.

Denial, along with fear and feelings of hopelessness, are sentiments which arise with astonishing force and distressing frequency. In the first days after diagnosis, many parents find themselves in a state of denial over the situation they face. They simply cannot believe that their child has a life-threatening condition. They convince themselves that there has been an error and often seek out second and third opinions. This process of denial is a kind of defence mechanism that allows the parents to make it through these first terrible days in spite of their fear and desperation.

 

Nevertheless, little by little parents begin to listen to the favourable statistics that doctors offer them. They regain some control over their emotions and gradually start to accept the new situation, so that once again they are able to help and support their child, as well as effect the necessary adjustments and arrangements that make his treatment possible.

Beginning to make decisions, studying the treatment options, learning about the disease, and establishing a positive working relationship with the health professionals responsible for the care of the child are all helpful actions in the management of these emotions.

Anger is an almost universal response to the diagnosis of a chronic illness. We should remember that parents feel guilty, frustrated, and full of fear. They need to express these emotions, but initially may not be capable of directing their impulses in an appropriate manner, so they tend to aim their anger at the disease, at the medical personnel, the hospital, their spouse, their family, friends, themselves and, on occasion, at the sick child. Even though feelings of rage are normal, it is important to find suitable settings for their expression which is essential for the course of healthy psycho-social adjustment.

The types of action that are suggested for anger management include improving communication with doctors and nurses, discussing one’s feelings with specialised professionals, speaking with the parents of other sick children, taking physical exercise, practising yoga or other relaxation techniques, listening to music, talking with friends, joining support groups, and dedicating a day to oneself each week or month.

The eternal confrontation between hope and despair accompanies parents throughout the course of the illness. Parents experience an acute sense of loss when their child is diagnosed. They do not feel prepared to face the possible deterioration of the child’s condition, or worse, the child’s death. They see only the loss of hopes and dreams for their child and for themselves as parents, and they fear, quite simply, that they will not be capable of dealing with the enormous problems facing their family. In general, they feel overwhelmed by sadness, and even when the prognosis is good, theirs is but a relative sense of relief.

However, the basic human need to find the positive in any situation makes the family clutch on to any bit of hope they encounter at each stage of the illness; from the hope of a cure at the beginning, to the hope that the next hospitalisation will be later rather than sooner; from the hope that the child will be able to lead a relatively normal life, to the hope that he will not suffer any more pain.

 

In order to make this emotional adjustment, it is important to have good handle on the situation, but the question of perspective is fundamental. As much attention should be devoted to understanding the child’s current condition and to the technical and medical advances which may be used to treat it, as to maintaining a realistic focus on what the child is able to do based on his present circumstances; because hope in these cases is defined as well-being in the present and the wish for a better day tomorrow.

In a way, all of the concrete actions discussed have a common theme and the same basic mission: to understand the disease and integrate it into the family’s daily life in order not to be crushed by it.

No matter how devastating, the fact of the child’s illness must become simply another component of regular family life, not the emotional centre around which everyone and everything revolves.

It is only through the assimilation of the illness into the day-to-day reality of the family that the parents will be capable of recognising and accepting the many possibilities that their child will have throughout the course of his life. Their child may not become an exceptional athlete, nor perhaps live to an advanced age, but he will be able to take advantage of many of the wonderful things that life has to offer, like sharing a joke with friends, listening to beautiful music, enjoying a good book, and he will contribute his ideas and experiences to the society in which he lives. The child will not be conditioned by his disease, only by how he lives it. He will not be limited by what he can do, only by what he does not try to obtain. He will have truly learned to live in harmony with his circumstances.

 

 

English translation by Emiliabianca Pisani