Animation on living with MS (multiple sclerosis) and uncertainty

Eva van Reenen presented an animation for people who have to live with the uncertainties of MS, based on her PhD research. The animation is intended to offer a sense of recognition to people with MS and provide starting points for conversations with loved ones and healthcare professionals. This way she hopes to contribute to greater awareness of the impact of uncertainty on daily life.

Background

Multiple sclerosis (MS) is a chronic condition with an unpredictable course. For people with relapsing-remitting MS (RRMS), there is a great deal of uncertainty: whether and when new symptoms will arise, how the disease will progress, and what effect treatment will have. This uncertainty relates not only to medical questions about diagnosis, prognosis and treatment, but also to everyday life: confidence in one’s own body, relationships, work, future plans and important choices.

Much research into uncertainty in multiple sclerosis (MS) focuses on medical, practical and psychosocial issues. Within the healthcare sector, too, there is often a tendency to seek to reduce uncertainty by providing more information. However, not all uncertainty can be resolved. Relatively little research has been conducted into the personal and existential significance of uncertainty and into the way in which uncertainty is interwoven with healthcare practice and treatment decisions. Eva van Reenen’s PhD research therefore focused on the lived experience of uncertainty amongst people who have recently been diagnosed with RRMS.

Empirical data

The empirical core of the PhD research of Eva consists of a trilogy of phenomenological studies. Based on coherent empirical fieldwork, uncertainty was examined from three interconnected perspectives: as the lived experience of people with MS, as a phenomenon that takes shape in hospital practice, and as part of the process of choosing a treatment. Together, the three studies demonstrate how uncertainty manifests itself across different domains and moments of life with MS.

Taken together, the three sub-studies show that uncertainty extends far beyond simply ‘not knowing’ what will happen medically. To make these findings accessible and relatable beyond the realm of academic publications, they have been translated into an animation. This gives a different form to the experiences shared by participants in the study.

Where language and academic publications have their limitations, visuals can not only show something, but also convey a sense of what it means to live with uncertainty. The animation is intended to offer a sense of recognition to people with MS, provide starting points for conversations with loved ones and healthcare professionals, and contribute to greater awareness of the impact of uncertainty on daily life.