When someone close to us falls ill, a parent, a brother, a sister or a dear friend, we are plunged into the illness with them. And even though we are not the ones directly affected by the diagnosis, the doctor’s announcement will very often imply daily constraints for the family and those around us, which may last or even worsen over time.
We often feel guilty for not feeling well, for having difficulty managing a daily life that has been turned upside down, while we think we should be strong and keep our spirits up in front of the sick person who needs us. However, it is quite normal (and healthy) to have difficulties in such a situation. So how do we deal with such an event? How to best help the person who is suffering, while protecting oneself? This is what we are going to try to see together through this article.
The reception of the disease
It is important to know that when a difficult diagnosis is announced, the patient can adopt several types of destabilizing reactions. Faced with the immediate inability to accept such news, they may minimize what is happening to them, or even plunge into total denial. His defense mechanisms may lead him to refuse all care at first, or to give the impression of not being affected at all by what is happening to him. Conversely, the patient may not be able to cope with the violence of the doctor’s revelations and may be overwhelmed by fear and anxiety. All of these reactions are normal and constitute a necessary digestion time for the announcement of the illness. As a caregiver, our role is to respect the patient’s stages of acceptance, without exaggerating or underestimating what the diagnosis involves. Even if we want our loved one to immediately launch into a frantic battle against what is happening to him or her, we must still allow the necessary preparation time to be ready to launch into this battle. Keep in mind that you are not the one who is ill.
Accepting your own emotions
Even though we are not directly ill, we too experience the doctor’s announcement in a brutal way. And it is perfectly normal to experience a host of difficult emotions. Fear, anxiety, sadness, panic… even anger! We are angry at the idea of being dragged into such a situation in spite of ourselves. All these emotions should not make you feel guilty. It is normal to feel things.
But how can you not let yourself be overwhelmed?
Although these feelings are legitimate, it is important that they do not interfere with our relationship with the patient. However, repressing them could lead to psychological exhaustion that would affect you as much as the patient. This is why it is advisable to open up to others.
When faced with the illness of a loved one, you must admit an essential truth: you cannot manage everything alone! Cancer, Alzheimer’s or Parkinson’s are long-lasting illnesses that require people around you to support you. The patient needs you, but you also need support. So don’t hesitate to count on your family and friends. Talk about it, cry, express your anger… You have to express your resentments to avoid imploding.
Often, for illnesses that are likely to last, it may be useful to seek the help of a professional (such as a psychologist). The latter will help you to manage your emotions without repressing them, to understand feelings that can be guilt-inducing (e.g. anger: sometimes we feel angry at our loved one who is suffering, we cannot explain certain aggressive reactions…) and to adapt to the evolution of the disease and to the consequences that this implies in everyday life.
Talking groups allow you to meet people who are going through the same thing as you and with whom you can talk about your experience.
The patient is always a whole person
Although the disease may alter the motor and/or cognitive functions of the patient, the latter is still a person in his own right and needs to be treated as such. By overprotecting them, by taking care of everything even when they have not expressly asked for help, we end up infantilizing the patient, depriving them of their autonomy and ultimately doing them a disservice. The patient is already, by force of circumstance, in a position of diminished capacity and dependence on those around him. This position is very difficult to accept, one sees one’s place in the family change, and at work one is no longer always efficient. All of these changes are grievances for the patient, so our role is not to deprive him of his remaining abilities. We must be present at his request, but not treat him like a child. It is important to maintain an equal relationship as much as possible.
In other cases, the patient’s symptoms can test our patience and lead us to unkind reactions and impatience. If you should not feel guilty for this, you should nevertheless try to control yourself because it is a double punishment to blame the patient (indirectly or directly) for his condition. A psychologist or other professional can help you deal with this kind of difficulty.
Living with a serious illness is unfair. Why us? Why not someone else? We didn’t deserve this! This often leads to a lot of questions, to rethink projects, to rethink the obvious. But life is not fair, and when we go through a difficult ordeal, the way we face it is up to us.