Self Identity and Chronic Illness

A paper I wrote as part of my Honours course in Social Psychology in 2011.

SELF-IDENTITY AND CHRONIC ILLNESS

An individual’s concept of him or herself (his or her self-identity) is not only an internal and mental process but a social one as well. Cultural and societal norms, which influence both internal dialogue and interactions with others, have a massive impact on the formation of any individual’s self-identity (Charmaz, 1983). For the chronically ill individual, notions around health and wellness, which are inextricably linked to ideas of moral good (Furedi, 2005), become particularly important in their interpretations of their experiences with their bodies. 

Finding themselves embedded in a society which often attaches stigmas and prejudices to those with ill-health conditions, those diagnosed with a chronic illness experience a loss of their previously positive self-identities (Charmaz, 1995). Experiencing a sense of betrayal of their bodies over their healthy minds (Frank, 1995), the explorations of new personal limitations and boundaries allows for the revising of previously held identity goals for the individual. Although it is a constant process, one that is never completed, individuals can, through reframing the experiences of the ill body and ultimately surrendering to the illness, form a new positive self-identity (Charmaz, 1995).

Defining Self-Identity 

The development of an individual’s personal identity, or self-identity, is a part of the on-going socialisation process. It is both developed and maintained through the interactions with others, cultural and societal norms and expectations, and through internal mental processes (Charmaz, 1983). A way of defining oneself and differentiating the self from others (as a father, provider or dancer, for example), the concept of self-identity also includes they ways in which people wish to define themselves. 

Individuals may act on the intentions created by these wishes, or identity goals, in order to achieve the desired identity. While achieving an identity goal may serve to affirm the individual’s sense of self and self-esteem, the consequences for failure thereof can be great and the individual may lose his or her sense of self. In this way, the loss of self-identity is directly linked to the loss of self-esteem (Charmaz, 1995). Low self-esteem, which can be described as an overall negative core belief about the self, can have a huge influence on an individual’s behaviour and result in automatic and negative distorted thought patterns. These thinking patterns can lead to maladaptive or possibly harmful behaviour patterns (Fennell, 1998).  

The norms and expectations of the cultural and societal group and individual finds him or herself in can have a massive impact on the structuring of the individual’s self-identity. In modern westernised areas, the notion of health and wellness has become particularly important in shaping interactions with the self and with others (Furedi, 2005). 

Redefining Health

In its simplest terms, health can be thought of as a state of physical well-being where the human body is free from disease or ailments. Before the time of Hippocrates, the state of good health was thought to be a gift from the gods; a state maintained by invisible magical forces acting upon the physical being. Father of modern medicine and famous Greek Philosopher, Hippocrates pioneered a more grounded theory wherein the individual was perceived as having the ability to influence his or her personal health through balanced diets and sanitation (Awofeso, n.d.). 

In more recent times, modern western medicine has come to reconceptualise the physical body in relation to notions of health. The concepts of physical exercise and corrective posture, first used in military training procedures, began to dominate the medical literature in the early twentieth century (Armstrong, 2002). 

Reflective of the long-established goal of dominance of the mind over the body (Frank, 1995), an individual’s posture was considered, at the time, to be an outward expression of the level of inward control the individual had over the physical body. The ideal posture was concluded to be that of ‘standing to attention’ as it demonstrated both the readiness of the body for action as well as attention to the placement of the body in physical space. 

While ‘good’ posture was thought to reflect a state of health, physical exercise was designed more specifically to promote wellbeing and prevent the inevitable decay of the health body. Exercise, essentially, was thought to have a “corrective effect” in being able to remedy and “obviously defective or incorrect attitude or action of the body, or any of its parts” (Armstrong, 2002, p. 42) and individual may have in his or her pursuit of perfection. 

The concept of ‘normal’ (which implies the existence of that which is abnormal) was also soon developed through the measurement and assessment of the human body by the various medical bodies of western societies. Over time, these ideas were distributed to and internalised by the general population. Another important idea that was digested by western populations was that of the apparent need for interpersonal hygiene. The danger to the health of the individual’s body was supposed to come from the bodies of other people (such as germs being transferred through coughing) and so western society became obsessive about monitoring interpersonal spaces and rejecting those that appeared unhealthy (Armstrong, 2002).

Thus, health became a social issue and, in doing so, became an issue of moral behaviour. Health-seeking behaviour was seen as virtuous while deviant behaviour was described in terms of ill-health (Furedi, 2005). Ultimately, this way of framing health and behaviour encouraged the building of stigmas and prejudices experienced by those with chronic ill-health conditions. 

Chronic Illness

A chronic illness is, by definition, an illness that persists for 3 months or more (Chronic illness definition, 2011). A wide range of chronic conditions exist today, each with differing causes and symptoms, such as asthma, diabetes and arthritis.

Diagnosis with any of one of the many types of chronic medical conditions can often be interpreted by the individual as a failure (Kelly & Field, 1996) or a betrayal of the physical body over the healthy mind (Frank, 1995). For many individuals with chronic ailments, this failure is often represented in the distressing physical symptoms of the illness (such as constant pain or nausea) or the physical deterioration or disfigurement of the body (Kelly & Field, 1996). Such unpleasant experiences associated with the individual’s body can serve to emphasize the divide between the body and the mind. 

Not least because society promotes and upholds values of self and bodily control, feelings of anger can often be associated with this estrangement from the body. This is especially true if the individual sees himself (or herself) as losing control over bodily functions or feels as if their life and plans are controlled by what the body is and is not now capable of (Charmaz, 1995).

This feeling can be intensified by the need for assistive devices, such as crutches or wheelchairs, or through immediately visible symptoms such as the bending and bulging of arthritic joints (Kelly & Field, 1996). Such visual clues often remove the option of personal disclosure on the part of the ill-health sufferer, leaving them vulnerable to the judgement of others (Kralik, Koch, Price, & Howard, 2004). Even if the managed chronic illness has no obvious physical symptoms, other visual clues may exist in the form of medication boxes or devices (such as asthma pumps) and medical bracelets (Kelly & Field, 1996). 

Aside from the judgement and potential stigmatisation of the individual by others (Charmaz, 1983), individuals with chronic ill-health conditions often feel a sense of guilt when they compare their less functional bodies with the cultural and societal ideals. Finding themselves lacking, these individuals can experience intense shame about their very existence (Charmaz, 1995).

Ultimately, experiencing an ill-body can lead to the erosion of self-identity as social demands can no longer be met and the individual’s desired self-presentation cannot be achieved. Loss of the previously held positive self-identity is the first stage, however, in the process of the chronically ill redefining their sense of self to create a new positive self-identity (Charmaz, 1983).

Chronic Illness and Self-Identify

There are three major stages that an individual diagnosed with a chronic illness experiences in the process of adapting to the changed (and changing) body and life in order to create a new positive self-identity. The first stage of experiencing and defining impairment is characterised by the awareness of separation from the body and a loss of the previous self-identity. The second stage involves the beginning of the creation of a new sense of self through revising personal identity goals while the final stage involves completely surrendering, rather than fighting against, the illness (Charmaz, 1995).

Experiencing and Defining Impairment

For the individual with a chronic ill-health condition, the physical symptoms of the illness along with the physical limitations the body now experiences, the divide between the body and the self becomes apparent and important. The previous positive self-identity of the individual is repeatedly challenged by what the body is now capable of. A slow erosion of the individual’s sense of self can occur, especially if they previously defined themselves by their body’s physical capabilities (Charmaz, 1983). 

At this juncture, in the experience of their illness, individuals may choose to either struggle with or struggle against the chronic ill-health condition and its restrictions on their lives. In struggling against illness, the individual attempts to take control over his or her illness and body and involves a distancing of the self from the body. It is, in some senses, a denial of their actual experiences with their illness and body. 

The distancing of the self from the body, and the denial of the body’s experiences, can continue as long as the individual assumes that mastering his or her body is necessary in order to meet the prescribed cultural or societal norms (Charmaz, 1995) and to live a ‘normal’ life (Adams, Pill, & Jones, 1997). Failure to control the body in social environments can lead to experiences of public mortification which can devastate the individual’s sense of self (Charmaz, 1995). 

Self-identity can also be eroded through the individual constantly comparing they body’s previous capabilities with its current limitations (Charmaz, 1983). This is especially true if the individual has developed his or her previous positive self-identity around a number of social roles and obligations, such as that of a financial provider for the family or a caring mother figure, that he or she is no longer able to fulfil (Adams, et al., 1997). The individual might also be unable to meet the demands of his or her former social calendar either due to intrusive symptoms or through being physically incapable. 

The inability for the individual to return to their previous roles or lives can lead to a dissolving of their self-esteem and self-identity (Charmaz, 1983). Especially in a society where health is both highly valued (Armstrong, 2002) and closely linked with notions of moral good (Furedi, 2005), the chronically ill measure their self-worth against yardsticks that should only be applied to the healthy. Individuals with chronic illness often actively participate in their own discrediting when they accept the assumption that one is only a fully human when one is fully functioning.  Constant reminders of the individual’s chronic ill-health condition, such as medication regimes and physical symptoms, reinforce these low self-evaluations and can lead to self-discreditation and self-blame. Having to rely on others or specialised machinery and equipment, while designed to aid the individual, frequently underscores feelings of incapacity and incompetence and also undermines self-confidence and self-esteem (Charmaz, 1995). 

Self-identity and self-esteem are developed not only through mental dialogue but also through social experiences with others. For an individual diagnosed with a chronic ill-health condition, the interactions they previously had with other people may change significantly causing them to undervalue themselves and engage in self-discreditation (Charmaz, 1983). 

Especially when visible signs of illness are limited or absent, others may have unrealistic expectations of the capabilities of the individual diagnosed with the chronic illness (Asbring, 2001). Not meeting the expectations of others can lead to the rejection by others and ultimately undermine the individual’s sense of self-worth (Charmaz, 1995). 

When visible clues and signs about the chronic ill-health condition (especially obvious and unsettling symptoms of suffering) exist, these can often cause the friends and acquaintances of those with a chronic illness a considerable amount of discomfort. This can lead to their avoidance of the ill individual which can ultimately severely erode that person’s sense of self. 

An individual’s previously positive self-image may also be lost when others engage in tactic devaluation. This involves others acting upon the assumption that the diagnosed individual is not fully human or deserving of adult status by treating them as less than human or like children. Over time, these accumulated consequences of the individual’s chronic ill-health status, not limited to the diminished personal control he or she may have over his or her body, life and future, lead to the erosion of self-esteem and the loss of the previously positive self-identity (Charmaz, 1983).

However, when an individual accepts the sick body instead of constantly comparing it with both its past capabilities and the hopes of its future perfection, the sick body becomes predictable, manageable and even comfortable. Accepting the body, instead of attempting to master it, allows the individual to re-discover the body, in its new state, and learn about it. This is the beginning of unifying the altered body and the self and struggling with, rather than against, the illness.

Struggling with illness is an attempt to live as normal a life as possible without being unrealistic about the body’s capabilities and limitations. It involves a constant process of learning about the body and ultimately allows for the integration of now bodily facts into the lives and self-identity of the individual with the chronic illness (Charmaz, 1995). 

While struggling with illness involves close monitoring of the body and bodily experiences, rather than ignoring the existence of physical symptoms, it is important that the individual does not become illness-focused. When the individual becomes absorbed in his or her chronic illness, he or she focuses on the suffering, loss and burden associated with it. His or her self-identity will then be formed around being a patient as he or she identifies with the sick role (Paterson, 2001). 

Individuals who manage to struggle with illness without becoming illness focused may find themselves revising their self-identity goals as they learn about their body and integrate this information with their sense of self.

Revising Identity Goals

An individual’s identity is connected to the social roles and responsibilities that he or she values while identity goals are reflective of those roles he or she wishes to pursue. In becoming aware of and accepting the physical limitations of the body, the individual may find that certain goals are simply no longer be realistically achievable (such as becoming a dancer). Downward spirals in health as well as sudden episodes of serious illness or complications can also result in the lowering of identity goals (Charmaz, 1995).

New identity goals, however, can be drawn from positive role models and images of others managing the same chronic illness (Adams, et al., 1997). Others may emerge through the sacrificing of some identities in favour of retaining others. Careful maintenance of the body may maintain the identity goal of independence while relinquishing the goal of spontaneity, for example. 

For the individual with a chronic illness, making these trade-offs involves seeing one’s self as more than a body and an illness. In doing so, the trade-offs are often reframed in positive ways as identity gains rather than losses. In this way, the revising of identity goals can bring the individual a new sense of purpose as they redirect their lives and reframe their experiences. This feeling is emphasised when there is support from the individual’s social group for the choices and adjustments he or she is making. Financial support also allows individuals more freedom in their revised identity goals, such as allowing for early retirement or paying for someone else to take up the carer role in the household. 

Once identity goals have been revised and the individual has begun to develop a new and valued sense of self (which is not simply an identifying with the sick role), the individual can move to the final stage of surrendering to the sick body (Charmaz, 1995). 

Surrendering to the Sick Body

This final stage is an active, intentional and on-going process involving a complete awareness of the physical state of the body without the individual becoming obsessed with their ill-health condition. In this stage, which is described as a flowing with the ill body, rather than against it, the self is affirmed as being linked to the sick body (Charmaz, 1995). The individual, however, will now define him or herself as much more than an illness and a body.

In building this new sense of self, wherein the notion of the burden of the chronic illness has been replaced with a perception of the illness enhancing the quality and meaning of their life (Kralik, et al., 2004), the individual is no longer seeking to master both the body or the chronic illness. While the individual may hold out hope for future improvements, he or she is neither entertaining false hopes nor in any sort of denial about the chronic illness and the restrictions it implies (Charmaz, 1995). 

Surrendering to the sick body can also allow individuals the opportunity to re-evaluate their lives as they spend less time performing social roles or meeting obligations. Often this results in the individual with the chronic ill-health condition prioritising their own needs over those of others as they develop an increased respect for themself and their body (Asbring, 2001). Over time, as the chronic illness becomes a tool for self-discovery and a fundamental source of self-development rather than a burden and inconvenience (Charmaz, 1983), the individual may be able to develop a new self-identity which is more favourable than the one he or she previously held (Asbring, 2001). 

Multiple health crises, serious debilitation or the development of comorbid ill-health conditions can, however, lead the individual to re-experience the loss of self-identity and return them to the first stage of the adaptation process (Charmaz, 1983).

Conclusion

Having built his or her self-identity around various social roles and obligations, as people tend to do, an individual diagnosed with a chronic ill-health condition may experience a sense of bodily betrayal and a loss of self-identity. Especially in a westernised society, where health is highly valued and linked to notions of social and moral good, the individual may have to redefine his or her sense of self by reframing the limitations of the ill body and new life experiences. 

Through the revising of identity goals and surrendering of the self to the sick body, the individual has an opportunity to develop a new self-identity which may be more valued than the one that was lost. The process is, however, never-ending as the chronic nature of the condition implies and individuals may see themselves experiencing all three stages of the model of the adaption process a number of times. 

Reflection

Given that I was diagnosed with a rare chronic illness shortly after my sixteenth birthday, this particular topic is one that is quite significant for me. In fact, both the acts of researching and writing about the topic caused me to evaluate my own experiences, comparing them to the gathered experiences of others.

In doing so, I found myself agreeing with the notions put forward by Charmaz (1983, 1995). In particular, I do feel as though I experienced a loss of my sense of self for quite some time after receiving the diagnosis. I would describe the experience as being what I imagine being lost at sea must feel like: swimming without any landmarks to guide you to a safer place. The sense of betrayal was not just linked to the body, however. I felt life itself had betrayed me. If I couldn't trust in my body, a thing I thought I should have complete control over, then in what could I trust?

I also struggled to identify myself with the diagnosis. If I accepted and described myself as an Addisonian (someone with Addison’s disease), then I felt as if my new identity would centre on a physical ailment rather than on who I thought I was or could be. I was not my body and therefore could not be its illness. In this way, I ultimately reject the argument put forward by Charmaz (1995) which holds that in order to build a healthy new self-identity, the individual with the chronic ill-health condition must identify with the body. Instead, I seem to fall into a group which Adams, Pill and Jones (1997) describe as “pragmatists.” Essentially, I accept that my body has an ill-health condition and that I am responsible for the body’s care and maintenance. I do not, however, identify with my body or its illness.

In the end, I do believe that it is fair to say that I have built, through many years of self-exploration, a new self-identity that I feel is an improvement on the one I previously held. I do wonder, however, if this might not simply be a way of resolving the cognitive dissonance I must have experienced or a result of the process of maturing as I entered into adulthood.

References

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Asbring, P. (2001). Chronic illness - a distruption in like: Identity-transforming among women with chronic fatigue syndrome and fibromyalgia. Journal of Advanced Nursing, 312-319.

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Charmaz, K. (1995). The body, identity and self: Adapting to impairment. The Sociological Quarterly, 36, 657-680.

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Frank, A. (1995). The wounded storyteller: Body, illness and ethics. Chicago: The University of Chicago Press.

Furedi, F. (2005, February 12). Health: An unhealthy obssession? Retrieved April 20, 2011, from Institute of Ideas: http://www.instituteofideas.com/transcripts/furedihealth.pdf

Kelly, M., & Field, D. (1996). Medical sociology, chronic illness and the body. Sociology of Health & Illness, 18, 241-257.

Kralik, D., Koch, T., Price, K., & Howard, N. (2004). Chronic illness self-management: Taking action to create order. Journal of Clinical Nursing, 13, 259-267.

Paterson, B. (2001). The shifting perspectives model of chronic illness. Journal of Nursing Scholarship, 33, 21-26.