We host an interview with Aglaia Vignoli, Associate Professor of Child Neuropsychiatry at the Department of Health Sciences of the University of Milan and Specialist at the Epilepsy Centre of the San Paolo Hospital (Milan). She works in the field of epileptology, mainly infantile and young adults, and rare diseases with neurological problems. She collaborated with ISTUD Foundation within the ERE – Epileptologists telling epilepsy project, conducted under the patronage of the Italian League against Epilepsy (LICE) and with the unconditional support of Bial.
Q. What has Narrative Medicine meant for you, within the ERE project?
AV. It was a positive experience, and I would even say unexpected, since I had never come into contact with this way of approaching medicine. I was very impressed by the scientific approach of narrative medicine. Narrative medicine is addressed not only to patients and their caregivers, therefore to those personally facing a situation of illness and discomfort, but also to us professionals, and this is really interesting.
In the project, we were asked to write parallel charts starting from our professional experience, in particular thinking of our most significant ones: it was a challenging moment, which took some time but also some reflection, listening to our emotions in recalling these stories.
Q. What were the main aspects highlighted by the project?
AV. The project involved professionals throughout Italy, and although their backgrounds were different – those dealing with adults and those with children, those working in hospitals and those in universities, those working on emergencies and those on chronicity – the main topics converged: it means that these issues are important for all professionals dealing with epilepsy.
Fear emerged as a theme, which we professionals have to face daily, even unconsciously. Epilepsy is still very fearful: there is a constant crisis-related fear, despite our information activity. Issues related to work and difficulties in entering work market, or maintaining a job position have also emerged. On this front we must work also outside the medical field, with other institutions. Another issue is the difficulty of patients to be autonomous, their lack of independence.
Q. What elements emerged regarding burn-out?
AV. The burn-out, or emotional burden, issue emerged clearly – perhaps even more than in other areas. Sometimes we face the difficulty of solving particular situations: crises are often drug-resistant, and the tools we possess are not always effective, so certainly there is a sense of frustration.
Another aspect is the emotional burden of the disease: we work with patients who need to be supported, epilepsy is a disease in which it is important to provide widespread support, and this requires more energy than other medical activities. It takes a good level of empathy, to a greater extent than in other clinical situations.
Another aspect concerning professionals is that, beyond the awareness of our fatigue – which is important, indeed fundamental -, we need to find solutions to be facilitated in our profession. In addition to confronting from a psychological point of view or finding moments of emotional discharge, the possibility of using Narrative Medicine emerges as an aid in this sense, as well as being able to make experiences in the cultural and artistic field that could help professionals to better manage emotions. These new resources seem useful and promising to me.