Abandonment, rejection and social invisibility were commonly experienced.
I feel disliked. I feel nobody sees me clearly because I'm basically never seen... a non-person. (Female, 71 years, retired instructor).
Additionally, adult agency became compromised as participants failed to meet responsibilities, maintain independence or recover. Failure was part of everyday life, resulting in a loss of self-worth.
Responses to violation
Violation, with its losses and damage to self, was associated with two categories of responses, guardianship and reconstruction. These response categories were distinguished by their purposes and characteristics, and encompassed strategies used by participants to cope with CFS. The Guardian Response provided care and protection to self from CFS-related threats (including symptoms), while the Reconstructing Response redefined and renewed positive experiences of self. To varying degrees violation was always present, and therefore, the Guardian Response was constant, sometimes functioning at a subliminal or background level and at other times highly vigilant, depending on the strength of violation. Specific conditions were required for the initial development of the Reconstructing Response. Once established, reconstruction was implemented when the threats of CFS had been sufficiently reduced by the Guardian Response and important aspects of self had been reclaimed. However, the Reconstructing Response was not a constant presence but difficult to sustain, and when threats increased violation or guardianship moved to the fore. Each response and the conditions are reviewed.
The Guardian Response
Guardianship was a defensive response that protected participants against threats of invalidation and disruption, thereby reducing violation. It provided an environment for physical and psychological self-care. By fostering care and protection, the Guardian Response sought to retrieve and reestablish dimensions of the known-self that were still available to, or desired by, participants within the boundaries of their changed lives. As such, the response instigated a process of self-reclamation. The Guardian Response focused on self and was characterised by internality, vigilance, self-defense and assuming the burden of proof, as was described by this participant,
[When] you meet with any scepticism, your focus then becomes to prove that you're not malingering. (Female, 45 years, previously a resource officer, retired due to CFS).
Strategies implemented by the Guardian Response included living within limits, seeking and accepting help, gaining knowledge, evaluating health-related encounters and treatments, establishing safe relationships and containing emotions and emotional threats. These strategies were essentially defensive and were typified by the restriction and containment of participants' behaviours, emotions, cognitions and interactions.
Outcomes of guardianship were sometimes paradoxical with positive and negative effects to self. The reduction of activities associated with living within limits, for example, provided protection from over-exertion and subsequent deterioration, but also involved loss of desired roles and activities, social withdrawal and compromised perceptions of self-agency.
Nevertheless, the perceived benefits of self-protection outweighed the costs and guardianship remained a feature of the CFS experience. Despite negative effects, the Guardian Response provided the basis for retrieving and reclaiming valued aspects of self, and was the precursor to the renewal of self found with the Reconstructing Response.
The hardest lesson I think was to give up that [former] life... it was like a death. You had to grieve for that... it was a long time before I allowed that... it took a number of years to readjust my [perceptions of] successes and failures. (Female, 46 years, previously a health worker, retired due to CFS).
Cognitive realisation
An important condition to the Reconstructing Response was cognitive realisation of the symptomatic effects and chronic nature of CFS. This was a slow process hampered by the clinical uncertainty surrounding the condition. Participants remained unable to resume their previous lives; therefore, eventual acceptance of ongoing symptoms and a realisation of their effects became unavoidable, as described by this participant,
You realise you can't do things you'd like to do, and there's no good getting frustrated or uptight or anything else, you've just got to accept it. (Male, 74 years, retired inspector).
The other feature of CFS that required cognitive realisation was its chronicity and the uncertainty of recovery.
What happened for me for the first eight years, was that what you really lived and breathed was the thought that they'd come up with a cure and you'd go back to normal life. And what I realised was they weren't going to come up with a cure in a hurry. (Female, 53 years, part-time writer).
Cognitive realisation allowed participants to begin to turn their focus from eradicating symptoms and seeking treatments towards enhancing their daily lives within the confines of their illness. This opened up the way to a reconstructing response.
If there's a conflict and they're like 'Here, prove it to me', well, that's terribly hard. I can't do that. I just don't have the energy to prove anything... You don't get anywhere usually because people don't like losing arguments. (Male, 38 years, part-time student).
Space for self-reflection
As participants developed their ability to provide self-care and protection or when they experienced some improvement, space became available for reflection on how best to live with CFS. Symptom improvement provided participants with an opportunity to shift attention from monitoring physical experiences to the self-reflection necessary for reconstruction
The Reconstructing Response
Two broad strategies typified reconstruction, firstly, cognitive alteration of expectations (that is, downgrading or shifting of expectations) as described by this participant,
I don't expect myself to conquer the world anymore. I don't place undue pressure on me anymore. (Female, 39 years, full-time government officer).
Seeking new sources of fulfillment was the second broad strategy
Things that I can do, I do, and that impresses me. And when I achieve, it doesn't matter whether it's doing the chores or washing the dog, I've achieved, and that's how you have to try and keep up your self-esteem... in the past I wouldn't even consider those worth noting, so you have to completely re-prioritise everything. It's not easy... but if you get to that point, then you can be really pleased. (Female, 46 years, previously a health worker, retired due to CFS).
Further, the life lessons of CFS fostered perceptions of personal strength and evolution. When participants were able to predominantly enact the Reconstructing Response, they experienced a greater stability of self; however, in practice reconstruction was difficult and remained, to varying degrees, a struggle for most.
Discussion
Our findings are partly consistent with Whitehead's (2006) study that explored CFS experiences using Frank's typologies, in which a pattern of narrative movement was observed starting with restitution, then chaos, followed by a return to restitution and quest.
The fluctuating nature of the struggling self and process of renewal that comprises the illness experience of CFS is a crucial finding. Understanding the dynamic experiential course of CFS assists people with the syndrome and others to recognise inherent variability and be responsive to changing needs. Shifting perspectives is clearly an important feature of chronic illnesses, and the fit between the findings of the present study with the Shifting Perspectives Model provides support for the process of renewal.
With regards to experiences of self among people with CFS, and in partial contrast to Clarke and James (2003), the present study did not find a rejection of the former self in conjunction with the establishment of a new, radicalised self. Instead, a process of selective self-retrieval, in addition to the creation of a new self, was evident. The Guardian Response reclaimed valued aspects of the before-CFS-self (although it could only be partial and sometimes tenuous), and facilitated the conditions necessary for the renewal of self. Thus, the present study found both restoration of a former self and (re)construction of a new self. By reclaiming self participants were valuing their identity and the person who had been rejected by others, in addition to reaffirming their place in the world despite the displacement imposed on them. In short, reclamation and restoration was self-validation.
Given the limited research on CFS adaptation and associated conditions, the articulation of the conditions necessary for the development of the Reconstructing Response provides an important insight.
While previous research has described numerous strategies enacted in response to CFS, the articulation of distinct response categories provides deeper understanding of the subtleties of the CFS experience. The movement between guardianship and reconstruction suggests that responding to CFS is a nuanced and complex process involving changing needs, paradoxical effects and multiple strategies. Some individual strategies identified in the present study have been previously reported. For example, and most notably, living within limits is consistent with a range of commonly reported strategies characterised by restriction/monitoring of activity (Edwards et al., 2007; Gray & Fossey, 2003).
Further, the strategies outlined in the present study were self-initiated, with participants receiving little CFS-related medical care. Exploration of self-management among people with CFS is yet to be investigated and is of particular importance given the increasing primacy of self-care to the management of chronic illness (Jordan & Osborne, 2007).
Understanding the intricate nature of the CFS experience provides guidance to people with the condition and their practitioners. The study addresses a neglected aspect of CFS research, that is, the subjective world and experiences of self-with-CFS. Participants faced threats arising from the chronic nature of their illness, and as with other contested conditions, there was a further burden of invalidation that brought additional suffering. Violation of self was, to varying degrees, a constant presence, and the defining responses of guardianship and reconstruction that enabled participants to reclaim and renew self, were evidence of adaptation, evolution and healing. Nevertheless, within the everyday experience of CFS, the struggle of self remained. Explication of the process of the struggling self seeking renewal brings to the fore the threatening, monotonous, chaotic, protective and transforming aspects of the CFS experience. It provides insights into living with illness chronicity and contention.
No comments:
Post a Comment