Explaining multiple sclerosis through storytelling

Discussing MS with the family: Annarita’s story

“There are some wires that help us move…I told them that mum’s wires were a bit worn down.”

Published 11 February 2020

Annarita was diagnosed with multiple sclerosis (MS) at the age of 23, and has now been living with the disease for more than half her life.

As MS is a progressive disease from the start, Annarita has experienced the many ways in which it can manifest and progress. However, disease progression can be a complicated topic to understand for both the person affected and those who surround them.

As a wife and mother of two children, Annarita understands the importance of having an open dialogue with her family about her disease. This is reinforced by her work as a child psychologist, where she helps families to recognise the benefits of children actively engaging with family members who are living with a disease.

One day, Annarita’s son mentioned how all the information he had found on MS was primarily focused on symptoms rather than how, with the right management of their disease progression, people can still live their best lives. So Annarita put her creativity to the test and, with the support of publishing company Carthusia Edizioni and Roche, developed the idea of a fairytale book for parents to read with their children to explain what living with MS means to them.

Annarita’s fairytale idea - A Fantastic Dance Competition – uses metaphors to bring the invisible symptoms of MS to life. The book tells the story of a dance competition between farmyard animals, where one chicken’s dancing is challenged by an invisible wolf.

Alongside the fairytale book, another metaphor Annarita has used to explain her MS is puppets. She would explain that when a puppet is moving, the wires which hold it up and move its arms and legs can sometimes get worn out. However, even with worn out wires, puppets can still stand strong and keep moving, just like Annarita does.

It was by helping her children to understand her own disease, and evolving the story as her disease and symptoms progressed, that Annarita saw how the power of creativity and imaginative storytelling can help facilitate similar, difficult discussions with other families and their children.

Disease progression in MS can be complicated, but open conversations can help people take an active role in managing their condition early, allowing those living with MS to live their best lives.

Tags: Patients, Innovation, People, Science