Finding benefit in stressful uncertain circumstances: relations to social support and stigma among women with unexplained illnesses

Abstract:

Living with a chronic illness can be challenging, but the ability to derive benefits and grow from this experience may enhance well-being. However, the possibility of obtaining such benefits may be dependent on the levels of stigmatization and lack of social support experienced by an individual as a result of the illness.

Chronic fatigue syndrome (CFS) and fibromyalgia are chronic conditions that remain largely unexplained and those with these conditions must often contend with stigma and skepticism from others. Individuals with CFS/fibromyalgia often display stress-related biological alterations and the experience of stressful life events has been associated with illness development.

The present study demonstrated that women with CFS/fibromyalgia (n = 40) as well as community participants who were depressed/anxious (n = 37), reported higher stigma levels than healthy women (n = 33). Moreover, women with CFS/fibromyalgia and those with depression/anxiety also reported greater levels of stigma than women with a chronic yet more widely accepted condition (n = 35; rheumatoid arthritis, osteoarthritis and multiple sclerosis).

Secrecy related to stigma among those with CFS/fibromyalgia declined with increased social support, but this was not apparent among those with other chronic conditions. In addition, posttraumatic growth was lower among women with CFS/fibromyalgia compared to those with other chronic conditions.

Qualitative analysis examining both negative impacts and positive changes stemming from illness experience revealed many similarities between women with CFS/fibromyalgia and those with other chronic conditions, including elevated appreciation for life, personal growth and compassion for others. However, women with CFS/fibromyalgia tended to report less positive change regarding interpersonal relationships compared to women with other chronic conditions.

In general, unexplained illnesses were also accompanied by stigmatization which might ultimately contribute to women’s lower ability to derive positive growth from their illness experience.

 

Source: McInnis OA, McQuaid RJ, Bombay A, Matheson K, Anisman H. Finding benefit in stressful uncertain circumstances: relations to social support and stigma among women with unexplained illnesses. Stress. 2015;18(2):169-77. doi: 10.3109/10253890.2014.1001975. Epub 2015 Jan 23. https://www.ncbi.nlm.nih.gov/pubmed/25544022

 

‘The letting go, the building up, [and] the gradual process of rebuilding’: identity change and post-traumatic growth in myalgic encephalomyelitis/chronic fatigue syndrome

Abstract:

The aim of this study was to explore the phenomenon of identity change and subsequent post-traumatic growth (PTG) in individuals with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Ten participants (average illness duration 7.4 years) were interviewed (average length, 79 minutes) via a semi-structured interview schedule and verbatim transcriptions were analysed with interpretative phenomenological analysis. The four superordinate themes revealed were ‘comparisons of past to present self: “you have to be someone else, and you have to live with that”’, ‘the effect of social isolation on identity and subsequent insights into others’ behaviours’, ‘contemplation of future and identity: ”where do I go from here?”‘, and ‘PTG: “the letting go, the building up, [and] the gradual process of rebuilding”‘.

These themes outlined the experiences of those with ME/CFS as they underwent changes in identity due to the limitations the condition imposed on activities and roles, understanding others’ behaviours after a period of isolation, the comparison of the past self with the present self and finally, the positive growth that was noted by two of the interviewees with regards to a new ‘true’ self. Despite the distressing and unpredictable nature of ME/CFS, it appears that individuals with this disorder can experience personal growth.

 

Source: Arroll MA, Howard A. ‘The letting go, the building up, [and] the gradual process of rebuilding’: identity change and post-traumatic growth in myalgic encephalomyelitis/chronic fatigue syndrome. Psychol Health. 2013;28(3):302-18. doi: 10.1080/08870446.2012.721882. Epub 2012 Sep 11. https://www.ncbi.nlm.nih.gov/pubmed/22963543