Parker, L.
(2021)
Seeing the invisible: a photovoice exploration of living with, and managing the invisible symptoms of Multiple Sclerosis.
DClinPsy thesis, University of Nottingham.
Abstract
Background: Multiple Sclerosis (MS) is a chronic inflammatory disease of the central nervous system, characterised by an abnormal immune system response which causes axonal demyelination. MS presents a range of debilitating cognitive, sensory, motor and affective symptoms. Some of the symptoms of MS are classified as ‘invisible’, due to the fact that they are not easily observable to others and are ‘hidden’. Common invisible symptoms include cognitive impairment, fatigue, pain, bladder and bowel dysfunction, sexual problems, and sensory dysfunction. Research shows that living with invisible symptoms causes distress for people with MS that differs from that of visible symptoms, not only because of their physical impacts, but because of their invisible nature.
Studies highlight the issues associated with invisible symptoms, whereby people with MS do not feel understood or believed by others in relation to their invisible symptoms and attempt to navigate their difficulties brought about by this. There is a dearth of research offering in-depth exploration of lived experience of a cluster of invisible MS symptoms.
Aims: This research aimed to explore how people with MS experience living with and managing invisible symptoms in daily life.
Method: Photovoice is a participatory visual research method, in which people are asked to produce their own images in order to share their experiences of a particular aspect of health and illness. Photovoice was used in this study to explore people’s lived experience of MS invisible symptoms. Twelve people with MS produced digital images over a two-week period to capture their experiences of living with and managing their invisible symptoms. Participants discussed their images and respective meanings in semi-structured interviews. The semi-structured interviews were analysed using an Inductive-Deductive Thematic Analysis.
Results: Three main themes and eight subthemes were developed. The first main theme encompasses the difficulties that exist around conceptualising invisible symptoms, not only due to their invisibility, but because people find it difficult to use language to accurately communicate their abstract symptom experiences. The second theme describes the conflicts of legitimacy this presents for people with MS, whereby they struggle to validate the reality of their invisible symptoms and this reality is also invalidated by others. The third theme elucidated how participants navigate these issues in dynamic ways, choosing to fit their symptoms to their lives or make space for their symptoms depending upon the context, often influenced by their desire for their symptoms to ‘stay invisible’ or to ‘be seen’. Choosing how to navigate invisible symptoms places a continuous burden on people with MS.
Discussion: This research provides insight into the challenges faced by people living with invisible MS symptoms, and the ways they negotiate daily life. It is important that clinicians and healthcare professionals are aware of the conflicts created by symptom invisibility so that they can offer appropriate support to people with MS. Further research is suggested to explore determinants of particular navigation styles, and also to explore whether improved psychological flexibility could support people with MS to navigate their invisible symptoms and associated impacts.
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