K. Wadden
Memorial University of Newfoundland Faculty of MedicineAuthor Of 1 Presentation
P1060 - The impact of invisible symptoms on self-perception, relationships, work and healthcare interactions from the perspectives of people with MS (ID 1355)
Abstract
Background
Invisible symptoms can be described as symptoms that are not obvious or appreciated by others. Many people with MS are impacted by invisible symptoms such as bladder issues, pain and fatigue, which have been described as burdensome and unappreciated by the public. The psychological burden of these symptoms may contribute to MS morbidity.
Objectives
To understand the impact of invisible symptoms from the perspectives of people with MS with low physical disability (EDSS≤3.5).
Methods
An interpretive descriptive qualitative approach was applied to responses to the question during individual interviews: “Other people with MS have reported being told they look well and must be doing well. Do you have any similar experiences?”. Preliminary codes and themes were generated and directed the semi-structured focus group guide. Focus groups allowed further reflection and expansion of ideas from the interviews. Themes were collaboratively generated using inductive thematic analysis.
Results
16 people with MS participated in the interviews and seven in the focus groups. Participants expressed frustration and the need for recognition of the impact of invisible symptoms on their daily lives. At the same time, they felt conflicted; perceiving that they should hide MS symptoms for fear of judgement by others. The decision of whether to disclose MS diagnosis, particularly in the workplace, caused stress for participants who were balancing the feared stigma of disclosure with a need for validation and accommodation. There were many social implications of invisible and hidden impairments, including concerns about other peoples’ perceptions of them and feelings of guilt when comparing their invisible symptoms to others with MS who they perceived as having more severe disability than them. Finally, participants felt that presence of clear and obvious walking problems took on greater priority during their interactions with healthcare providers than their invisible symptoms.
Conclusions
Invisible symptoms are prevalent in MS, even in those with no overt physical disability. When symptoms were invisible, participants sometimes felt motivated to seek validation from others. Conversely, subtle impairments were often hidden in attempt to avoid bias, judgement and stigma, particularly in the workplace. Desire for validation juxtaposed with the burden of concealment created stress and influenced perceptions of social relationships, healthcare interactions and judgement by others.