Chronic illness and physical limitations are a fact of life for people with ME/CFS, but how do they feel about being dependent on other people?
To answer this important question, researchers from the University of the West of England used semi-structured interviews to explore experiences of ten patients physically dependent on others for help day-to-day. The researchers found six themes that came up again and again.
Loss of independence was a major factor, often associated with a sense of guilt for being a burden to those closest to them; “When you can’t give anything back…it does make you feel second class and very insecure about your place in the world”. The invisibility of the illness was another issue, particularly trying to explain the illness to others and make them understand why help was needed. Also, anxieties about the present and the future were a problem, particularly about being able to access help when needed and whether it would come from “the ‘right’ people – people who would understand and handle the task in an appropriate manner”.
The three remaining themes were ‘catch-22’, where asking for help was almost as exhausting as completing the task; feeling angry and frustrated at having to rely so heavily on other people; and issues around accepting the condition. Some people found acceptance difficult, as they longed for the healthy life which was gone, but others found themselves starting to accept the “the reality of their life and limitations”, with reported improvements in quality of life or emotional distress.
This is a valuable piece of qualitative research that throws light on the impact of physical dependency on others, an aspect of the daily experience of ME/CFS patients that is rarely discussed or addressed in the scientific literature.
The psychological impact of dependency in adults with chronic fatigue syndrome/myalgic encephalomyelitis: A qualitative exploration. Williams AM, et al. J Health Psychol. 2016 Apr 19 (read more).