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Abstract Details

The Hardships of Hidden Disease: Impact of public perception in people with low disability multiple sclerosis
Multiple Sclerosis
P5 - Poster Session 5 (8:00 AM-9:00 AM)
9-004
To understand how people with low disability MS are impacted by the public perception of hidden disease.
With improved disease modifying therapy, people with multiple sclerosis (MS) are living longer with less overt disability. However, MS is still impactful, with symptoms such as fatigue and pain causing hidden disability. People with MS have indicated that these hidden impairments are burdensome and unappreciated by the public.
An interpretive descriptive qualitative approach was applied to responses to the question: “Other people with MS have reported being told they look well and must be doing well. Do you have any similar experiences?”. Two independent reviewers developed preliminary codes and themes were collaboratively generated using inductive thematic analysis and triangulation. 
16 people with MS (EDSS≤3.5) were recruited. All participants resonated with the statement in question, bringing forward feelings of frustration, judgement and need to validate disease. These feelings stem from an incongruence between perception and experience; “people think just because you look fine, you are fine”. There was a common feeling of guilt for mentioning subtle issues, particularly in comparison to others with MS who have worse disease; “I’m not that far along anyway…compared to a lot of people with MS”. In response, many participants internalize their struggles, going along with the perception leading to isolation; “It’s easier to say ‘I’m okay’ than ‘well, you know I’m having trouble today’”. This perception was particularly impactful in the workplace: “I need to go home and sleep but my administration is going to think I’m lying because I don’t look sick”. Helpful factors included education about disease and family support.
Although this sample has minimal disability, hidden impairment of MS is prevalent and impactful. Societal education about hidden impairments is important to facilitate understanding and support people at all stages of the disability spectrum of MS.
Authors/Disclosures
Megan C. Kirkland
PRESENTER 		No disclosure on file
No disclosure on file
No disclosure on file