Ernesto and Sara were sitting in the office one afternoon in June. They had a long list of psychologists and psychiatrists behind her back and her 14-year-old daughter Thais, now a teenager, had seen her last years pass between different diagnoses while she isolated herself, sank into a technological addiction and spent time watching series from a less than recommendable channel that encouraged her to self-harmThat afternoon I had to give them a lot of results and an unfavorable diagnosis.But why us? Why does this have to happen to us?“The mother said. Although I understood her anguish, we all knew it was an unanswerable question, while the father replied: “I think we are to blame for all this, what have we done wrong??”.
We are going to talk about this.
What is the difference between guilt and culpability?
It's called guilt psychological experience consequence of an action that causes harm, causing a feeling of responsibility. Both Sara and Ernesto, when they remember the years they have been fighting with their daughter, feel a lot of pain. But, at the same time, they remember the many moments in which they have lost patience with her, the other occasions, in which they did not understand what was happening to her, the other occasions in which they kept telling her to stop playing without opening the door to her room because, perhaps then, they would have realized that she was not playing but that she was was self-harming.
Although they know that her daughter's illness It's not their fault, they can't help but feel responsible for not having prevented it, for not having noticed. They feel guilty because they alone can't do anything to make Thais go back to how she was before.
Guilt is a feeling that makes one feel bad about oneself and can cause anxiety and depressionaccording to studies. Therefore, this over-demand that is imposed carer must be limited by the caregiver's own well-being.
Is it different if it is a physical illness or a psychological one?
If the disease is serious, chronic or can leave sequelae, it produces a emotional impact very important in the whole family and, in this case, it is not so important whether the disease in question is physical or psychological. While it is true that it is “easier” to understand a physical disease, such as cancer, because there are diagnostic tests, interventions that, however, a priori are believed not to exist if a disease is diagnosed childhood depression.
If the illness is mild, it can cause stress, since if we have a child with otitis, he or she may wake up in the middle of the night, not letting the parents sleep, and the parents end up feeling guilty for having shouted at the child, for having lost patience, or for not having done so but having had a lower work performance that day.
The most pressing problem comes when we talk about more serious diseases like childhood cancer, which is not just a physical illness but also has emotional consequences for the entire family and has a great impact.
In any case, the way in which a disease is experienced is very important both in coping with it and in the evolution of the disease. There is no difference as to whether it is a physical or psychological illness.
The other day in a session, one of the members of a couple of parents told me “I would have preferred that he had a physical illness” while the other told him “Well, I prefer that he has this one, rather than a physical one, which could end very badly.It was clear that one of them was completely willing to help his daughter, the other believed that helping was an optionThey are different ways of coping, but your daughter's health – both physical and psychological – depends on them.
Should I feel or hide my pain?
In a culture like ours we have been taught to repress emotional painjust as no one talks about death. When we say things like “don’t worry,” “everything will be okay,” “big boys don’t cry,” “you’re going to have to be strong now,” what we’re really saying is “don’t feel.”
The same thing happens when we tell a child that, in the face of the death of a loved one, “he has gone to heaven”, “he has gone on a trip” and we deny a reality: death. Children come in small packages but they are very clever. The only thing we achieve is to produce them fear of travelingfor example, because they remember the relationship that we ourselves have told them.
This denial of death This is the reason why we tend to hide the diagnosis of cancer from a child, but also because of our own inability when the big question comes up.am i going to die?”.
We find it difficult to face the negative emotions of the child but also to our own simply because we have been taught that These emotions must be repressedHowever, not everything we have been taught is correct, and this is one of those things. Today we should talk about a education based on emotional intelligencewhich is what our children should receive, but it should start at home. We must teach them that, under certain conditions and circumstances, it is correct to express appropriately what hurts us, makes us sad and makes us angry.
The emotional part is very important in coping with and developing the disease. As parents, when faced with your child's illness, you must allow yourself to feel anxiety, fear, rage, impotencepain but you should not stop feeling positive emotions both because he has made some progress and because you should remember that you have other children who should not be neglected either.
Repressing, ignoring or avoiding – both negative and positive emotions – only causes the anxiety is somaticizedproducing both physical and emotional consequences.
Emotional consequences in child-patients
There are no diseases, only sick people. In our society, there is an excessive tendency to label patients with a diagnosis that, on too many occasions, is stigmatizing and, on others, induces fear, distrust and even hasty searches for Doctor Google, opening a vicious circle of greater distrust, fear, pain…
The emotional reactions of parents They are so important because the reactions of the little patients will depend on them. Other times it will depend on an issue as important as the presence of pain – if the illness is physical – or the deterioration of their family, school and interpersonal relationships in general – if the illness is psychological.
In any case, parents blame themselves for “if only I had realized it sooner” but they cannot go back to the past to fix, erase or change anything.
In this context, the main reactions that children have are:
- Little awareness of the disease.
- Irritability, anger, aggressiveness.
- Behavioral apathy, isolation, sadness.
- Anxiety.
- Fears: of pain, of losing the course, of emotional abandonment by the family and of death.
Remember that you have other children
When one of the members of a family falls ill, the family – as a system – falls ill to help, protect and defend the member. However, if you have one or more children, you must remember that they are not sick and that, as children, they also need you. However, in these cases their emotional reactions are:
- They feel forgotten and neglected.
- Regressive behaviors. For example, they may ask for a pacifier, suck their thumb, have enuresis and encopresis.
- Jealousy and tantrums.
- Headaches or abdominal pain are nothing more than somatic complaints seeking attention.
- Isolation and sadness, with profuse crying and loss of desire to play.
- Having the feeling that they will never be a normal family again.
- Fear of getting sick themselves or their parents.
- Wish to be my brother's age.
- Worry about what might happen to his brother.
- Feelings of guilt for not being sick themselves or for believing themselves to be guilty of their brother's illness.
- Anger at having to do more chores at home because their parents spend more time with their brother than with them or because they cannot do activities they used to do due to illness.
- Being “perfect children” in their attempt to help their parents.
Just parents facing their child's illness
You must allow yourselves to feel. It is not necessary that both of you feel the same thing. You are two different people but with a common goal and you can feel all of this:
- Deny or reject the disease. Show disbelief. It is common for you to say “This is a nightmare”, “It's a horrible dream“, “sIt's not really happening”. The truth is, the sooner you accept it – which is not the same as resigning yourself – the better for you and your child.
- Feeling of loss of control over your life. This is common when you have to spend time between appointments and treatments.
- Lack of understanding of what is happening, confusion.
- Irritability, anger, rage, frustration, disappointment.
- Worry, fear, anxiety.
- Impotence, tiredness.
- Feelings of guilt.
- Neglect of one's partner and other children.
- Overprotection of the sick child.
Guidelines to keep in mind
- Listen, don't just hearMaintaining good communication is essential to give your child all the necessary support and that implies release and express emotionsListen to the child without interruptions, make him feel in a comfortable environment where he is loved and respected and if you have to argue with him, do so but do not attack him.
- Keep your relationship with your partner alive. Don't focus only on your sick child, you have other children and you have each other. It is important to know and feel supported by each member of the couple. Sometimes an unexpected phone call a day, a few WhatsApp messages, a note in your briefcase, anything will help to prevent the illness from dragging down your relationship. Consider that the different way of thinking of each member of the couple regarding their child's illness ends up breaking it in situations of serious or chronic illness.
- Patience. Whether with your other children's regressive behavior or with yourself, try to understand and accept your emotions. Give yourself time to adapt to this situation.
- Aid. Ask for help when you need it. Let yourself be helped by professionals and by people close to you, especially grandparents and siblings of the sick child.
- Attitude. Optimistic, realistic, hopeful. Think that you are transmitting all this to your sick child.
- Boundaries. You need to know your real possibilities as a caregiver and those of your child as a sick person. Set limits if necessary. He is still a child to whom you must set rules with love, without overprotecting him and with the most natural treatment possible.
- Balance. Between illness and family life, trying to ensure that the former disrupts the latter as little as possible. Also, trying to ensure that the needs of other family members are not disrupted. If we focus everything around the sick child, the emotional consequences are very damaging to the family system.
- Take care of yourself. Take care of your own health to ensure that your child's health is protected; get enough sleep, exercise regularly…