The doctor answers Gwendolyn Rossi, psychiatrist and psychotherapist
Second installment of the AICARMNews series on the answers doctors, analysts and therapists give to the most frequent questions they hear from patients. This time to answer is Guendalina Rossi, psychiatrist and psychotherapist. These are five questions that summarize the doubts, worries and anxieties of those who encounter the disease for the first time. "The answers - says Dr. Rossi - certainly do not exhaust or fully satisfy the curiosity and the need to know, but we hope they can stimulate interest in further study".
1) Since I know I have cardiomyopathy I feel different, a little sad and a little angry. What can I do?
The news of having a disease is an earthquake in anyone's life. From "healthy" one becomes "sick" and enters the status of "patient".
In general, we are used to thinking that everything depends on our will, but the diagnosis of disease makes it necessary to adapt to something that we have not chosen or wanted.
It can be very difficult to go from thinking of one's body as something that belongs to us, as an object that we can use without limits or restrictions, to the awareness that that body has limits and becomes our limit itself.
Awareness of the diagnosis requires the patient to change his perspective, but also allows him to give a new meaning to the flow of life itself. It is important to give yourself time, not to isolate yourself and above all to talk about it. Meanwhile with a friend, a family member or in any case a person you trust. It can also help to confront someone who has already been there and knows what they are talking about.
2) But who could help me? Maybe I should talk to my doctor or get help from an experienced psychologist?
Of course it can help to talk to your doctor, especially if they are well informed on the specific topic. However, if one has the impression that, despite the passing of time, one is unable to "digest" the news, one continues to think almost exclusively of the disease, one feels changed from our usual way of being, or one gives up on doing things even though this is not imposed by the health condition, then it becomes necessary to ask for more targeted help from a professional who leads us to accept the novelty of the disease and allows us to build a new balance. The disease undermines and modifies all previously achieved personal and family balances; therefore, the intervention of someone "external" who can help and accompany the person to accept his new condition and include the disease in his life can often be useful.
3) I am worried that my cardiomyopathy can be passed on to my children. What can I do to tell the family?
Sometimes, talking to your family can be extremely difficult, especially when the diagnosis of cardiomyopathy may be in your children.
In these circumstances, parents often feel guilty, anguish and pain about what their children may have to face overcomes them. There may also be a sense of shame associated with passing on something so undesirable as a legacy that will also change their life. Furthermore, family dynamics that are not very functional are often activated, both within the parental couple and between parents and children. In fact, it is necessary and useful that space and possibility of expression be given to the feelings and emotions of everyone, parents and children, but in an evolutionary way so as to make communication within the family unit as fluid and authentic as possible.
It may be useful to get help from your cardiologist or a psychologist to know how to address your children. In fact, it's important to be clear and sincere, but you need to have the right words to say such a difficult thing.
Furthermore, the age, the different character of the children, their resources and their vulnerabilities make it necessary to carefully evaluate "how" to speak to them.
4) Isn't the idea that I have to undergo continuous medical therapy or implant a defibrillator for me? How can I do to accept it?
Accepting that a device is inside our body can be experienced very differently by patients. For some it is a protection, a lifesaver that secures and guarantees life. For others it can be a sort of anguished threat, an alien who occupies the body and makes it foreign to those who inhabit it by right.
Either way, it can be very helpful to talk to patients who are being treated and who already have a defibrillator. This sharing makes it possible to directly understand, from those who experience it every day, how one's life can unfold by taking a pharmacological therapy or carrying a device in one's body: the limits, the critical points, the drawbacks, but also the real advantages, the sense of safety and security. There are patients who know how to tell these serious and important things lightly and ironically, allowing the listener to imagine a possible life. However, if it is really that difficult, or even impossible, to accept lifelong drug therapy or a defibrillator, then it is necessary to seek the help of an experienced psychologist or psychotherapist.
5) I have read on the net that patients with Cardiomyopathy can die suddenly. Since then I've been terrified, but how can I take away this fear?
Surfing the net is not always a good idea as there may be inaccurate news or that can create a lot of alarmism. In fact, every patient has his own story and the best thing, when he feels the need for clarification, is to talk to his cardiologist, the only one who knows his patient's condition in depth and who can give truly pertinent answers to his situation. or in any case contact "Hearts in listening", the desk created by AICARM Onlus which, thanks to the work of volunteers and specialists, offers support to those who, patients or their families, are involved in the experience of cardiomyopathy.