Seeing the Invisible: A Photovoice Exploration of Living With and Managing the Invisible Symptoms of Multiple Sclerosis

Abstract

In this photovoice study, we explored how people with multiple sclerosis (MS) experience living with and managing invisible symptoms in daily life. Twelve people with MS produced digital images over a 2-week period to capture their experiences of invisible symptoms. Participants then discussed their images in semistructured interviews. We thematically analyzed the interviews and developed three main themes that encompass the difficulties around conceptualizing invisible symptoms and the conflicts of legitimacy this presents for people with MS, in which the reality of their invisible symptoms is invalidated by others and sometimes for themselves. Participants navigated these issues in dynamic ways, choosing to fit their symptoms to their lives or make space for their symptoms depending on the context, often influenced by a desire to “stay invisible” or to “be seen.” We highlight clinical implications for supporting people with MS around the legitimacy conflicts they experience and how they negotiate living with invisible symptoms.