The notion of “invisibility” in people’s experiences of the symptoms of multiple sclerosis: a systematic meta-synthesis

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

Abstract

© 2021 Informa UK Limited, trading as Taylor & Francis Group. Purpose: Invisible symptoms have a negative impact on people living with Multiple Sclerosis (MS), related to the very notion that they are “unseen.” It is important to understand the notion of “invisibility” in MS, as invisible symptoms are particularly distressing, and there is a paucity of research focussing on their invisible nature and its specific impact. We aimed to systematically identify, appraise and synthesise qualitative research regarding the notion of “invisibility” in relation to people’s lived experience of symptoms of MS. Methods and materials: Articles meeting inclusion criteria were critically appraised and synthesised using a meta-ethnographic approach. Results: 17 articles were identified from six electronic databases. Three third-order themes were presented as a line of argument. “Invisibility” was conceptualised by people with MS as a discrepancy between the internal experience of symptoms and what is observed externally. “Invisibility” of MS symptoms was found to have numerous impacts, including not feeling understood or validated by others, issues around the perceived legitimacy of the illness, and living with needs which are hidden. We found that “invisibility” by its nature offers people a choice of strategies they use to navigate it. This choice introduces a dilemma: disclose the diagnosis to be “seen,” or remain “invisible.” Conclusions: This review revealed the manner in which people with MS are affected by the invisibility of their symptoms and the various adaptations used to navigate these lived experiences. We highlight the need to improve clinician and public understanding, and to better respond to these experiences. Future research focusing on the exploration of people’s experiences of “invisibility” in MS, including the ways in which “invisibility” is managed on a day-to-day basis could raise clinical and public awareness of the impact of “invisibility” and how to provide support for this, thus easing the dilemmas faced by those with MS.IMPLICATIONS FOR REHABILITATION People with Multiple Sclerosis (MS) experience symptoms that are not overtly visible to others, impacting their emotional and social wellbeing negatively. It is important for healthcare professionals to validate MS patients’ experiences around “invisibility” and provide appropriate support. Healthcare professionals should address with MS patients any issues around disclosure of their diagnosis to those around them and support them to navigate these decisions. Raising awareness about the impact of “invisibility” for people with MS may help to lessen patient burden and promote understanding amongst healthcare professionals and the general public.

Citation

Parker, L. S., Topcu, G., De Boos, D., & das Nair, R. (2021). The notion of “invisibility” in people’s experiences of the symptoms of multiple sclerosis: a systematic meta-synthesis. Disability and Rehabilitation, 43(23), 3276-3290. https://doi.org/10.1080/09638288.2020.1741698

• Journal Article Type: Review
• Acceptance Date: Mar 8, 2020
• Online Publication Date: Mar 24, 2020
• Publication Date: 2021
• Deposit Date: Mar 10, 2020
• Journal: Disability and Rehabilitation
• Print ISSN: 0963-8288
• Electronic ISSN: 1464-5165
• Publisher: Taylor & Francis Open
• Peer Reviewed: Peer Reviewed
• Volume: 43
• Issue: 23
• Pages: 3276-3290
• DOI: https://doi.org/10.1080/09638288.2020.1741698
• Keywords: Rehabilitation
• Public URL: https://nottingham-repository.worktribe.com/output/4121988
• Publisher URL: https://www.tandfonline.com/doi/full/10.1080/09638288.2020.1741698
• Additional Information: This is an Accepted Manuscript of an article published by Taylor & Francis in Disability and Rehabilitation on 24/03/2020, available online: http://www.tandfonline.com/10.1080/09638288.2020.1741698