As suggested in Nunn’s (1996) explication of hope, the agency component is linked to responsibility. People in the Moratorium stage feel powerless in almost all aspects of life. Chronic illness, whether physical or mental, in which a person feels a loss of control over the illness, can bring about a sense of powerlessness that can result in a cycle of poor self-esteem, depression and hopelessness (Miller, 1992). Furthermore, psychiatric symptoms themselves rob the person of a sense of control over themselves (e.g. Williams and Collins, 1999; Chovil, 2005).
Dependency and the adoption of the sick role reflect the loss of a sense of agency and abandonment of responsibility for one’s life. The following quotes suggest a path to loss of motivation, starting with the symptoms of the illness, through the negative effects of treatment on motivation and on to acceptance of the patient role: ‘My illness attacked my self-esteem and motivation. I felt powerless, unable to improve my life’ (Anonymous, 1994b); ‘People have gotten used to their identities and roles as ill, victims, fragile, dependent and even as unhappy.
Long ago we learned to “accept” our illnesses, give over control to others and tolerate the way of life’ (Mead and Copeland, 2000, p. 321), and ‘It’s appealing to be taken care of and give up responsibility and indulge in hospitalisations, confusion and rejection of accountability for me and my life’ (Dickerson, 1994, p. 28).
The sick role, which was conceptualized in the context of acute illnesses, allows a person temporary exemption from social roles, with the understanding that the person’s responsibility is to get well by seeking, and complying with, the professional treatment. As Kelly and Millward (2004) point out, the sick role is not always appropriate in chronic illnesses, as it is based on the assumption that the condition can be cured by the doctor, and is only a temporary departure from one’s usual roles and responsibilities.
The notion that people with a mental illness need to take responsibility for their own lives and wellness is not to be misunderstood. It is important to emphasize that this does not imply that the person is in some way responsible for their illness, or for the consequences of the illness. Although lack of autonomy has been shown to lead to depression, Waller (2005) warns against confusing increased autonomy with moral responsibility. Waller makes the distinction between moral responsibility, or being to blame for the condition, and ‘take charge’ responsibility, that is, responsibility for management of illness. Consumers have described the struggle with the loss of control over their lives, brought on by the illness . . .
My whole life had collapsed around me and it seemed like there wasn’t anything I could have done to prevent it. But living with mental illness the rest of my life was not something I wanted to do. I wanted to sleep all the time, making it difficult to function on a daily basis. The simplest tasks were no longer easy to perform. My frustrations gave way to tears, self-pity, and resentment. I wanted answers and the mental health system didn’t have any. (Schmook, 1994, p. 2) . . . and by their treatment and care:
Whereas most healthier people have had choices, I’ve had none. My choices were made for me by other people – parents, housing directors, hospital and staff psychiatrists.
(Lynn, 1994, p. 51)
. . . the real tragedy of that time [in hospital] was the day-to-day tedium and boredom and wearing down of the human spirit – not being able to decide when to get up or go to bed, when to eat, with whom to talk, not being able to send or receive uncensored mail, to make a phone call, to eke out an instant of privacy – these were the more subtle results. (Unzicker, 1994, p. 61)
The role of this loss of choice in recovery from illness has been elaborated in Self Determination Theory (e.g. Deci and Ryan, 2002; Sheldon, Williams and Joiner, 2003). Lack of autonomy in one’s goals can undermine intrinsic motivation: the inherent drive to learn, master and grow (Ryan and Deci, 2000b). Behaviour that is controlled by others does not generate the same levels of energy and persistence as do self-determined goals. Nor is the pursuit of controlled goals associated with the same levels of well-being as autonomous personal goals (Sheldon and Kasser, 1998; Ryan and Deci, 2000b). Treatment for physical and mental illnesses can often involve treatment regimes, rehabilitation efforts and life goals that are not those of the person trying to recover. Pettie and Triolo (1999) challenge us to imagine being a participant in a game show:
Come on down! . . . way down . . . to your new life as a mental health client. You lost your job, car, apartment and boyfriend, but just wait until you hear about one of the dazzling new goals we have in store for you in your new life! Your new goal is to drag yourself out of bed to get showered, dressed, and fed in time so you’re no more than an hour late to the first group of your new day program! (p. 258)
Efforts to motivate people to non-autonomous goals by using controlling methods, such as fear or coercion, paradoxically undermine motivation (Sheldon, Williams and Joiner, 2003). Leibrich (1997) writes that the purportedly top-quality hospital, which had been her last hope for asylum, maintained a hierarchy in which the patients were treated as second-class citizens: patients’ feelings and self-expressed needs were understood in terms of mental illness. Leibrich says, ‘I became mute, almost catatonic’ (p. 38).
The sense of powerlessness experienced by patients was one of the instigations behind the consumer movement, which adopted ‘consumer empowerment’ as a primary goal (McLean, 1995). The ex-patients’ movement arose from gross abuses of patients’ human rights within the mental health system. Leibrich (1997) describes how a group of patient representatives on a hospital staff–patient committee posted a patients’ ‘bill of rights’ on notice boards. It criticized lack of choice of treatment, drug regimes and abuse of patients. The administrator’s response the next morning was to divide the patient representatives up so that they could no longer communicate with each other. Leibrich (1997) was put in seclusion and drugged.
The ex-patients’ movement has two equally important objectives according to Chamberlin (1990). One is the development of self-help programmes as an lternative to professional treatment, although many people who attend these programmes simultaneously utilize traditional mental health services (Chamberlin, 1990). The other objective is advocacy for political change, such as the removal of all laws and practices which limit the rights and responsibilities of people who have been labelled with a mental illness (Chamberlin, 1990). Self-help groups have made great strides in combating stigma and increasing involvement of consumers in decision-making processes at all levels of the mental health system (Chamberlin, 1990), and one would hope that abuses of basic human rights are now rare in the mental health system. Nonetheless, consumers continue to suffer the effects of authoritarian organizations and power differentials between clinician and client (e.g. Barker, 2001; Fekete, 2004; Fisher, 1994; Lynn, 1994; McLean, 1995; Torgalsboen, 2001; Unzicker, 1994).
For consumers receiving care within the mental health system, the primary concern is for autonomy in personal treatment and rehabilitation decisions, and antecedent to this is the need for personal empowerment. Corrigan et al. (1999a) identified two superordinate factors to empowerment in a consumer population:
community orientation and self-orientation. Community orientation to empowerment included the factors of community action, powerlessness and effecting change – variables which are clearly related to the aims of the survivors’/ex-patients’ movement. Self-orientation to empowerment involved self-efficacy, optimism/ control over the future and self-esteem. These latter, intrapersonal, variables are demonstrably the more relevant to consumers struggling to regain responsibility for themselves and control over their lives. People describing their experience of the Moratorium stage have expressed feelings of complete powerlessness: ‘When one lives without hope (when one has given up) the willingness to “do” is paralysed as well’ (Deegan, 1994, p. 56).
The rediscovery of the possibility of a more active self is therefore necessary before a person can begin to take an active role in his or her own recovery (Davidson and Strauss, 1992). We will now explore the mechanisms and consequences of the loss of a sense of self.
