 |
| Identity in the Awareness Stage: I Am Not the Illness |
Identity in the Awareness Stage: I Am Not the Illness
In this stage of recovery, the person realizes that there still exists an ‘intact self’ capable of taking action on one’s own behalf (Davidson, 1994). Davidson and Strauss (1992) found that for some people, there is a realization that there remain healthy parts of the self that are not affected by the illness. Others become aware of personal resources of which they were previously unaware. Deegan (cited in Spaniol and Gagne, 1997) explained the need to be become aware of one’s inner strengths before being able to accept the illness:
How can we accept the illness when we have no hope . . .. Why should one pile despair on top of hopelessness.. . . So perhaps people are wise in not accepting the illness until they have the resources to deal with it. (p. 76)
As Estroff (1989) proposed, denial of illness, even while acknowledging symptoms, can be a plea for recognition of the persisting healthy self trying to survive. There is an enduring ‘core’ self that has developed over time, that the person is trying to distinguish from the negative social identity bestowed by the illness (Estroff, 1989; Charmaz, 1999). ‘Mr A’ described the ‘part of me that is well no matter what situation I get myself into, the aspect of me that loves myself without any conditions attached . . .’ (Duckworth et al., 1997, p. 229). In the Awareness stage, there is a breaking away from the feeling that the illness must dictate who one is, as the person comes to realize the possibility of a self independent of the patient role. As noted in Chapter 3, the sick role is legitimate in acute conditions, allowing the person to become dependent on necessary care and to receive exemption from his or her usual roles (Kelly and Millward, 2004). However, in the case of chronic illness, the hierarchical relationship between patients and professionals is more appropriately replaced by a collaborative relationship; and the person may wish to retain social roles which may be abandoned in the sick role (Charmaz, 1999).
Pettie and Triolo (1999) have identified two positive explanations of mental illness a person may adopt. The first they describe as ‘illness as evolution’ (p. 260). In this explanation, illness is seen as a way of learning about the self and developing previously unrecognized strengths. This meaning of the illness helps to instil hope for a positive future, and provides a reason to work towards recovery. Curtis (2000) described recovery as a process of moving from being defined by the illness, to integrating the illness as a small part of the whole self. People reconstruct a sense of self, in which the illness is seen as only one aspect of a complex self (Young and Ensing, 1999). Illness as evolution is one way of accepting the illness as part of the self. A second way of accepting the illness is to regard it as a separate entity, or ‘illness personified’ (Pettie and Triolo, 1999, p. 260). This implies a relationship between the self and the illness, and allows the person to develop an identity separate from the illness (Strauss, 1989; Davidson and Strauss, 1992; Pettie and Triolo, 1999). Pettie and Triolo explain that ‘illness personified’ gives the person some control over their part of the relationship: that is, in how they respond to the illness. Strauss (1989) found that a key turning point evident in interviews of people with schizophrenia was a change of attitude in which the person accepted the illness and decided to have a life in spite of the illness. Acceptance did not take the form of resignation, which would denote helplessness, but rather, the determination to work towards a better life (Strauss, 1989). People who are in positions where they have little control over events, choices or outcomes, can adopt a stance of applying their remaining resources to do what they can (Jaffe, 1985, p. 113).
For some people, this separation of self from the illness was facilitated by adopting a biomedical explanation of illness (e.g. Anonymous, 1994b; Armstrong, 1994; Berman, 1994; Fekete, 2004; Henderson, 2004). Fekete (2004) says ‘I distinguish between bipolar disorder and what I mean by me, or my identity. My illness is a separate, alien thing from my identity’ (p. 192). However, many individuals vehemently deny the medical model of mental illness, claiming that this explanation is fraught with determinism and hopelessness (Thornhill et al., 2004). The medical model leaves them without hope of recovery, and tied to a future of medication, treatment and merely coping (e.g. Bjorklund, 1998; Schmook, 1994; Unzicker, 1994). Some people described hardships or childhood trauma which they felt were causal factors in the illness (Anonymous, 1989; G. Dickerson, 1994; Lynch, 2000; Lynn, 1994), whereas others adopt the biopsychosocial model (Anonymous, 1994a; Leete, 1989; McDermott, 1994; Wentworth, 1994). For example, an anonymous consumer says, ’I have gotten a lot of insight into how my background shaped my personality, and I can see where I got some ‘raw material’ for developing my particular brand of delusions, paranoia, and other symptoms’ (Anonymous, 1989, p. 346).
Miriam (cited in Thornhill, Clare and May, 2004) rejected the medical model being imposed on her, and says ’I had a very passionate feeling that I needed help with a great many human problems’ (p. 188). This enabled her to escape from the illness identity and was more important to her than getting over the psychosis itself.
While for Alexander (1994) the psychosis represented a spiritual journey: Important to my healing, was the realization that I had an experience that was to be treasured and not labeled as a ‘mental illness’. My identity was focused away from being a patient or ex-patient, but to my own life experience which was validated by literature and philosophy. (p. 38)
Whether adopting a medical, psychosocial, biopsychosocial or spiritual model, the person takes comfort in an explanation of the illness that relieves him or her of the stigma of mental illness: ‘I have often told friends that the key to overcoming schizoaffective disorder is to know yourself, to know your illness, and to know the difference between the two’ (Anonymous, 1994b, p. 25).
Freedom from the patient identity enables the person to imagine a more positive possible future self. As described by Jaffe (1985), this response is in contrast to the ‘victimization’ response, characterized by helplessness, and is at the core of selfrenewal after traumatic experiences.
In this stage of recovery, the person realizes that there still exists an ‘intact self’ capable of taking action on one’s own behalf (Davidson, 1994). Davidson and Strauss (1992) found that for some people, there is a realization that there remain healthy parts of the self that are not affected by the illness. Others become aware of personal resources of which they were previously unaware. Deegan (cited in Spaniol and Gagne, 1997) explained the need to be become aware of one’s inner strengths before being able to accept the illness:
How can we accept the illness when we have no hope . . .. Why should one pile despair on top of hopelessness.. . . So perhaps people are wise in not accepting the illness until they have the resources to deal with it. (p. 76)
As Estroff (1989) proposed, denial of illness, even while acknowledging symptoms, can be a plea for recognition of the persisting healthy self trying to survive. There is an enduring ‘core’ self that has developed over time, that the person is trying to distinguish from the negative social identity bestowed by the illness (Estroff, 1989; Charmaz, 1999). ‘Mr A’ described the ‘part of me that is well no matter what situation I get myself into, the aspect of me that loves myself without any conditions attached . . .’ (Duckworth et al., 1997, p. 229). In the Awareness stage, there is a breaking away from the feeling that the illness must dictate who one is, as the person comes to realize the possibility of a self independent of the patient role. As noted in Chapter 3, the sick role is legitimate in acute conditions, allowing the person to become dependent on necessary care and to receive exemption from his or her usual roles (Kelly and Millward, 2004). However, in the case of chronic illness, the hierarchical relationship between patients and professionals is more appropriately replaced by a collaborative relationship; and the person may wish to retain social roles which may be abandoned in the sick role (Charmaz, 1999).
Pettie and Triolo (1999) have identified two positive explanations of mental illness a person may adopt. The first they describe as ‘illness as evolution’ (p. 260). In this explanation, illness is seen as a way of learning about the self and developing previously unrecognized strengths. This meaning of the illness helps to instil hope for a positive future, and provides a reason to work towards recovery. Curtis (2000) described recovery as a process of moving from being defined by the illness, to integrating the illness as a small part of the whole self. People reconstruct a sense of self, in which the illness is seen as only one aspect of a complex self (Young and Ensing, 1999). Illness as evolution is one way of accepting the illness as part of the self. A second way of accepting the illness is to regard it as a separate entity, or ‘illness personified’ (Pettie and Triolo, 1999, p. 260). This implies a relationship between the self and the illness, and allows the person to develop an identity separate from the illness (Strauss, 1989; Davidson and Strauss, 1992; Pettie and Triolo, 1999). Pettie and Triolo explain that ‘illness personified’ gives the person some control over their part of the relationship: that is, in how they respond to the illness. Strauss (1989) found that a key turning point evident in interviews of people with schizophrenia was a change of attitude in which the person accepted the illness and decided to have a life in spite of the illness. Acceptance did not take the form of resignation, which would denote helplessness, but rather, the determination to work towards a better life (Strauss, 1989). People who are in positions where they have little control over events, choices or outcomes, can adopt a stance of applying their remaining resources to do what they can (Jaffe, 1985, p. 113).
For some people, this separation of self from the illness was facilitated by adopting a biomedical explanation of illness (e.g. Anonymous, 1994b; Armstrong, 1994; Berman, 1994; Fekete, 2004; Henderson, 2004). Fekete (2004) says ‘I distinguish between bipolar disorder and what I mean by me, or my identity. My illness is a separate, alien thing from my identity’ (p. 192). However, many individuals vehemently deny the medical model of mental illness, claiming that this explanation is fraught with determinism and hopelessness (Thornhill et al., 2004). The medical model leaves them without hope of recovery, and tied to a future of medication, treatment and merely coping (e.g. Bjorklund, 1998; Schmook, 1994; Unzicker, 1994). Some people described hardships or childhood trauma which they felt were causal factors in the illness (Anonymous, 1989; G. Dickerson, 1994; Lynch, 2000; Lynn, 1994), whereas others adopt the biopsychosocial model (Anonymous, 1994a; Leete, 1989; McDermott, 1994; Wentworth, 1994). For example, an anonymous consumer says, ’I have gotten a lot of insight into how my background shaped my personality, and I can see where I got some ‘raw material’ for developing my particular brand of delusions, paranoia, and other symptoms’ (Anonymous, 1989, p. 346).
Miriam (cited in Thornhill, Clare and May, 2004) rejected the medical model being imposed on her, and says ’I had a very passionate feeling that I needed help with a great many human problems’ (p. 188). This enabled her to escape from the illness identity and was more important to her than getting over the psychosis itself.
While for Alexander (1994) the psychosis represented a spiritual journey: Important to my healing, was the realization that I had an experience that was to be treasured and not labeled as a ‘mental illness’. My identity was focused away from being a patient or ex-patient, but to my own life experience which was validated by literature and philosophy. (p. 38)
Whether adopting a medical, psychosocial, biopsychosocial or spiritual model, the person takes comfort in an explanation of the illness that relieves him or her of the stigma of mental illness: ‘I have often told friends that the key to overcoming schizoaffective disorder is to know yourself, to know your illness, and to know the difference between the two’ (Anonymous, 1994b, p. 25).
Freedom from the patient identity enables the person to imagine a more positive possible future self. As described by Jaffe (1985), this response is in contrast to the ‘victimization’ response, characterized by helplessness, and is at the core of selfrenewal after traumatic experiences.
