The Lega Italiana Contro l’Epilessia – LICE, in collaboration with ISTUD’s Health and Care Area, has promoted a narrative research project to find out about the work placement and employment experiences of people with epilepsy, a topic of great interest because it is closely linked to the quality of life of those who live with this pathological condition.
The project was launched in the early months of 2021 and through the web page www.medicinanarrativa.eu/storie-di-epilessia-e-occupazione in a few weeks 147 narratives were collected, full of ideas and elements to understand how to raise awareness and better prepare the working world for this condition. It was possible to collect the narratives thanks to the awareness of epileptologists belonging to LICE, the dissemination of the initiative through the social channels of Fondazione Epilessia LICE and the important contribution of some Associations (Federazione Italiana Epilessie- FIE, Associazione Epilessia- AE and Fuori dell’ombra – Insieme per l’Epilessia).
The initiative was aimed at all people over 18 years of age diagnosed with epilepsy in Italy, divided into those who have had epilepsy since their school years and those who have seen the onset of seizures when they have already started their careers. The picture that emerges is largely differentiated between the two groups of respondents.
On the basis of the study of the results, carried out by ISTUD researchers in collaboration with the Working Group composed of LICE epileptologists and representatives of the Associations, many points for reflection can be drawn. “Those who have epilepsy from the age of study have less chance of entering the labour market than the rest of the population, both because of the many difficulties experienced at school and because of the great obstacle of job interviews. Despite the fact that epilepsy is now better known and that training programmes are carried out in schools, the stigma is still strong and often appears to be independent of the specific type of epilepsy and frequency of seizures: just one seizure is enough to seriously compromise study and work opportunities,” says Paola Chesi, researcher at ISTUD.
However, there is no shortage of stories of redemption, of those who, despite everything, manage to continue their studies, achieve qualifications and obtain job opportunities, but these are results obtained with difficulty and with the activation of their own resources and those of their families. They are therefore on their own.
“Interestingly, the biggest hurdles for people with epilepsy from a very young age are between school and job interviews. When you get a job opportunity, the narratives tell us that time helps you prove your worth and how well you can manage epilepsy at work – with due differences related to the specific job type and context. Unfortunately, we read about forced departures from work due to the occurrence of crises, but we also read about situations in which self-esteem gradually grows, and one decides to communicate one’s condition at work (if one has not done so before), one feels satisfied and has good relationships at work. Understanding comes, but after a long process of getting to know each other” says Oriano Mecarelli, Past President LICE.
“There are often stories of people who have seen epilepsy appear after their working career has already begun, perhaps right at the workplace. In these cases, doors are often closed in a more traumatic and uncertain way. The search for a stable cure does not help but, once again, the stories tell us that a single crisis is enough to cancel or compromise a working career of even years’, concludes Prof. Oriano Mecarelli.
In conclusion, there is still a lot to be done in terms of information and awareness about epilepsy and the wealth of these stories and the enormous amount of material to be analysed may represent a good starting point for tackling the problems related to the employment of people with epilepsy.
The full project document can be found at www.lice.it and www.medicinanarrativa.eu.