Seeing the invisible: an exploration of living with, and managing the invisible symptoms of multiple sclerosis

Abstract

Background People with multiple sclerosis (MS) typically experience a constellation of invisible symptoms not observable to others. The hidden nature of these symptoms presents additional challenges for people with MS, particularly in navigating the invisibility of their experiences. This research aims to explore how people with MS experience living with and managing clusters of invisible symptoms in daily life. Methods We used a photovoice method, whereby 12 people with MS produced digital images over a 2-week period, to capture their experiences of living with and managing their invisible symptoms. They discussed their images in semi-structured interviews, and data were thematically analyzed. Results We developed three main themes and eight subthemes. The themes encompass the difficulties around conceptualizing invisible symptoms, not only because of their invisibility but also because people found it difficult to use language to communicate their experiences accurately. This presents conflicts of legitimacy for people with MS, whereby they struggle to validate the reality of their invisible symptoms and this reality is also invalidated by others. Participants navigated these issues in dynamic ways depending upon the context, often influenced by their desire for their symptoms to ‘stay invisible’ or to ‘be seen’. Conclusion This study offers a unique exploration of experiences that cannot be captured through words alone, in which people with MS invited us to ‘see the invisible’ that they navigate every day. We highlight clinical implications for supporting people with MS around the legitimacy conflicts that they experience and how they negotiate living with invisible symptoms.