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

Parker, Le-Sharn; Topcu, Gogem; De Boos, Danielle; Bale, Clare; das Nair, Roshan

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Authors

Le-Sharn Parker

GOGEM TOPCU GOGEM.TOPCU@NOTTINGHAM.AC.UK
Programme Manager (Neuroms)

DANIELLE DE BOOS DANIELLE.DEBOOS@NOTTINGHAM.AC.UK
Associate Professor, co-Director (Academic & Research), trent Doctorate in Clinical Psychology

Clare Bale

ROSHAN NAIR Roshan.dasnair@nottingham.ac.uk
Professor of Clinical Psychology and Neuropsychology



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.

Citation

Parker, L.-S., Topcu, G., De Boos, D., Bale, C., & das Nair, R. (2024). Seeing the Invisible: A Photovoice Exploration of Living With and Managing the Invisible Symptoms of Multiple Sclerosis. Clinical Psychological Science, https://doi.org/10.1177/21677026231220846

Journal Article Type Article
Acceptance Date Oct 6, 2023
Online Publication Date Jan 23, 2024
Publication Date Jan 23, 2024
Deposit Date Dec 7, 2023
Publicly Available Date Jan 7, 2023
Journal Clinical Psychological Science
Print ISSN 2167-7026
Electronic ISSN 2167-7034
Publisher Association for Psychological Science
Peer Reviewed Peer Reviewed
DOI https://doi.org/10.1177/21677026231220846
Keywords multiple sclerosis, invisible symptoms, photovoice, visual methods, qualitative
Public URL https://nottingham-repository.worktribe.com/output/28146908
Publisher URL https://journals.sagepub.com/doi/10.1177/21677026231220846

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