Following my first testimony in 2014, I would like to contribute to a topic that, while seemingly marginal at first glance, is, in my opinion, of significant importance. I am referring to the attitude of those around the patient.
The attitude of a patient’s loved ones can be divided into two groups: those who are directly involved with the illness (spouse, close family) and acquaintances (friends, neighbors).
The first group, confronted with the illness on a daily basis, lives with constant worry and finds it very difficult to take a step back, especially as they have to manage caregivers, appointments, medication… and painful crises when they arise. In short, unlike the patient, the spouse has no respite and lives in a state of alarm!
The second group wants to show their compassion and concern, often clumsily and with excessive pathos. This attitude is usually conventional, prompted by the image that the patient projects of their own state of health and their fears of death. Believing that they are offering comfort, they only reinforce the negative image of the disease.
The same attitude can be found towards disability.
From the patient’s point of view, in the case of a chronic illness, many stages have to be gone through. Most often, these correspond to the so-called curve of change or curve of grief. Denial > rebellion > negotiation > acceptance > integration and action. From this perspective, and when the work on oneself is nearing completion, the gaze of others and the constant reminder of the illness is a real poison from which one must absolutely protect oneself.
The patient knows they are ill, there is no need to constantly remind them. Their days are numbered and they have other things to talk about than their ailments. Here again, without going into detail, we can distinguish two groups. Those who settle into their role as patients, getting used to being cared for, pitied, and assisted, and those who, on the contrary, want to make the most of moments of improvement, have plans, even tiny ones, and remain in control of their lives.
It is clear that the relationship with the patient is complicated and involves many cultural, intellectual, sociological, religious, and emotional factors. Not everyone has the same toolkit at their disposal, and the distress caused by the inability to make things better and the uncertainty of the future does not help matters. However, these subliminal messages are negative anchors that the patient should learn to protect themselves from and that those around them should be made aware of in order to understand their harmful effects. Communication channels are also behavioral: attitudes, phone calls, text messages, and emails are all factors that can trigger memories.
My rule is simple: Let’s talk about the illness when necessary, otherwise let’s talk about other things! … and above all, avoid those whose concern traps you in a reductive status, that of a sick person.
In conclusion, I firmly believe that both patients and their loved ones should be made aware of this issue, which I consider to be of great importance in the therapeutic process. In this regard, recent studies on epigenetics corroborate my point. There is growing evidence that the quality of our social relationships, activities of all kinds, and the direction of our thoughts, whether positive or negative, have a direct impact on the expression of our genes and therefore influence our health. Isn’t this what we call genome reprogramming? But I don’t have enough knowledge to talk about this. Let’s just say that the subject is related and that there is food for thought…