Source Social Science & Medicine EXCERPTS
URL: http://www.sciencedirect.com/science/journal/02779536
Self within a climate of contention: Experiences of chronic fatigue syndrome
Michele Kerry Travers(*), Jocalyn Lawler Faculty of Nursing & Midwifery, University of Sydney, Australia * Corresponding author. E-mail addresses: mtravers@nursing.usyd.edu.au (M.K. Travers), jlawler@nursing.usyd.edu.au (J. Lawler).
Background
The potential for chronic illness to disrupt the integrity of self-perceptions has been well documented and there is a substantial body of research that describes a general process of damage and repair to self. Over two decades, there has been a conceptual shift in the constructions of chronic illness from loss and burden to normality and transformation, and caution has been expressed regarding the idealisation of the chronically ill person as powerful and able, while minimising the multifaceted nature of chronic illness that includes disabling aspects (Thorne & Paterson, 1998). The lives of people with chronic illnesses, for example, have also been described as 'tumultuous existences' and 'fractured' (Vickers, 2000, p. 4). Alongside the potential for positive transformation resides ongoing loss and suffering.
Chronic illnesses that are outside the confines of medical legitimacy, that is, contested illnesses, offer a different prism for the investigation of self-perceptions. Illness experiences of people with contested conditions include an additional burden related to scepticism and dissension. People with contested conditions typically report disbelief from medical practitioners regarding their symptomatic accounts (Glenton, 2003), psychological explanations for physical symptoms (Garro, 1994) and an absence of medical care (Gibson, Placek, Lane, Brohimer, & Lovelace, 2005). Contention brings with it judgments about those affected. There is evidence that medical practitioners perceive people with contested conditions as possessing negative qualities, such as illness-fixation and pessimism (Asbring & Narvanen, 2003). This context of delegitimation influences illness experiences, with reports of contention contributing to altered self-perceptions, for example, disrupted identity among people with multiple chemical sensitivity (Gibson et al., 2005), and feelings of worthlessness and 'character blemish' (p. 2249) among people with back pain (Glenton, 2003).
Chronic fatigue syndrome (CFS) is a high profile contested condition. Detrimental effects to the individual are significant, with research indicating marked functional impairment (Buchwald, Pearlman, Umali, Schmaling, & Katon, 1996), low levels of social support (Schoofs, Bambini, Ronning, Bielak, & Woehl, 2004) and a poor quality of life (Rakib et al., 2005). These detrimental personal effects are reported in other contested conditions and represent burdens common to delegitimised illnesses (Gibson et al., 2005).
Another study of the ways people learn to live with CFS identified two experiential phases (Edwards, Thompson, & Blair, 2007). Phase 1, 'overwhelmed by CFS', was characterised by 'a really awful time', 'an invisible illness' and 'fighting it' (p. 206). Phase 2, 'learning to live with CFS' included characteristics of self-help, learning to 'pace', and positive thinking (p. 206). Movement occurred between phases, with mediating factors influential to feelings of control. The characteristic of movement/progression described in the findings of these two studies is a feature widely reported in the chronic illness literature (Paterson, 2001), suggesting it is related to chronicity rather than representing a phenomenon specific to contested conditions or CFS in particular.
Clarke and James (2003) reported that, over time and in response to separation from their previous everyday lives, people with CFS rejected former selves and established new selves. Clarke and James noted that their findings contrasted with earlier chronic illness research in which a desire for a former, restored self is reported. They explained this difference as arising from the contested nature of CFS and suggested that this contention denied people with the condition a legitimate place in the social order. In the absence of legitimising discourses, people created new identities, that is, a radicalised self. These findings suggest that contention results in experiences of self different to those encountered with legitimated chronic conditions.
Other researchers have reported a disrupted sense of identity and competence (Gray & Fossey, 2003), a loss of self (Edwards et al., 2007), and low levels of self-esteem among people with CFS (White & Schweitzer, 2000). Partial but significant biographical disruption, identity transformation and illness-related positive outcomes have also been reported (Asbring, 2001). While the research on self is limited, findings indicate that changes to self-perceptions arise from CFS and that its contested position is of significant influence.
By providing a different contextual prism, investigation of contested conditions explicates additional insights and strengthens existing knowledge of chronic illnesses while also deepening the understanding of the experience of living with a disreputable illness. This article describes the effects to self and concomitant responses that together constitute the CFS experience, thereby providing insight into the lived world of people whose chronic illness is marginalised by the biomedical model and whose symptoms remain medically, socially and culturally disputed.
Findings
Experience of CFS: struggling self seeking renewal
The Guardian Response sought to provide protection and self-reclamation, while the Reconstructing Response fostered self-renewal.
Threats of CFS
There were two types of threats associated with CFS; disruption and invalidation. Threats of disruption arose from the chronic nature of the condition and included body failure, unpredictability, illness invisibility, functional impairments, dependency and loss. Threats of invalidation were derived from the social construction of CFS as a contested illness with a disputed 'reality' and exposed participants to an additional dimension of threat not found with legitimated chronic illnesses. Threats of invalidation trivialised suffering and relegated participants to a position of inferiority. They included stigma, disbelief, turning the abnormal into the normal, the attribution of negative qualities and responsibility, dismissal and commandeering of symptoms; for example,
Suddenly everyone started to get the symptoms of it at work. They all thought they had it as well and that was really annoying... it was like making a mockery of it. They were just thinking it was a little bit of tiredness. (Female, 34 years, recovered after 6 year illness, full-time secretary).
Participants found that invalidation was a defining response of others to their illness. It represented a pervasive and enduring experience that contributed to perceptions of violation.
Violation of self
CFS was associated with violation to self, a constant but fluctuating presence resulting in a struggle for self-reclamation and renewal. Violation began with the failure of participants to recover, when they started to question their beliefs, perceptions of reality and sometimes sanity. Generally, their self-doubts were the same as the doubts of others, that is, doubts about the reality of CFS, the legitimacy of their impairments and their responsibility for the illness. Although mostly episodic, self-doubt contributed to violation by throwing into disarray the participants' perceptions of themselves as experts in and of their own lives, alienating their connection to the known-self. Self-doubt was commonly paired with self-blame, as typified by this participant,
There's also a constant feeling of maybe there is something I can do myself to make it better. Maybe the headaches are my fault 'cause I'm feeling tense, or I'm not taking the right vitamins. Maybe there's something I can do. And then you try it and no, that wasn't it. (Female, 58 years, previously adult education officer, retired due to CFS).
While self-blame was mostly intermittent, it was always problematic. Participants felt responsible but did not know why. Through what was potentially an infinite process of exclusion, participants searched (for a time) to find the trigger, behaviour or unresolved conflict underlying their illness. This search was commonly used against participants with accusations of hypochondriasis or malingering reported. Self-blame resulted in self-perceptions of inadequacies and moral flaws.
The Violated Self involved diminishment and loss of the known-self and the taken-for-granted. Participants reported that significant aspects of self had been markedly changed, and this change was undesirable and damaging. They had been reduced to an inferior version of their before-CFS-self, for example,
I feel like I'm the ugly twin that has nothing to offer... I think probably the foremost thing would be that I just feel like I'm so different. (Female, 39 years, full-time government officer).
Participants retained some measure of stability because a few core attributes were felt to be dormant rather than lost, nevertheless, the diminishment of valued qualities resulted in biographical disruption (Bury, 1982), a loss of self (Charmaz, 1983) and a weakened identity. Identity was also violated by the loss of future identities and identity sources, particularly family and work roles. One participant described the loss of her expected future identity this way,
People who knew me before - I met one recently and she was gob-smacked that I was a housewife because that's not what I'd planned, it's not what I'd envisaged, and it's probably not what I would have done. (Female, 47 years, previously a health worker, retired due to CFS).
In sum, CFS compromised attributes of self-definition, disrupted biographical continuity and reduced perceptions of a positive future.
The integrity of past, present and future relationships was violated. As their inability to socialise, work and fulfill relational obligations continued, or as disbelief from others regarding the veracity of the illness grew, there was a gradual disappearance of existing relationships and participants found themselves rejected, forgotten or ignored. In addition, the capacity to establish new relationships was diminished.
Guilt and shame reflected perceptions of personal failure and inferiority and consequently, were associated with decreased self-worth, isolation and estrangement. Participants felt displaced from their own lives and from humanity. This displacement specifically arose from invalidation (notably stigma) and neurocognitive disturbances, and was felt as a dislocation or altered reality that resulted in estrangement. One participant described the relationship between impaired memory and estrangement in this way,
With my memory loss I forget tracks of my life, people, conversations... that's where I think you get this sense of [being] removed from reality because your memory is playing such tricks on you. (Female, 47 years, previously a health worker, retired due to CFS).
Further, they felt their lives had stalled or were suspended while they waited for a return to health. As described by this participant, they had lost their place in the progression of life.
It's like the earth has stopped, but all of a sudden something is going past you... I'm existing, the whole world out there is living. You're staying still... You can see everyone moving and you just can't. (Female, 29 years, full-time consultant).
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