When diagnosed with a chronic illness, suffering can be all-encompassing, and those affected with experience a shift in self-identity (Charmaz, 1983). Self-identity, simply, is ones perception of themselves, shaped by formative experiences and values, and used to guide decision-making and actions in ones life. Ones self of self is closely tied up with self-image, whilst also contingent on the gaze of the other (Nanton, Munday, Mason, Kendall & Murray, 2016). Chronic or life-limiting illness can irrevocably damage these self-images, triggering a chaos narrative, in which one struggles to find any meaning in life or illness (Nanton et al., 2016). The reformation of the new self is complicated by the inevitable biographical disruptions caused by the newly formed ‘ sick self’, along with uncertainty, and the loss of personal, social and professional lives (Walker, 2010). The cumulative effects of these factors results in a catastrophic threat to the self, in which individuals must draw upon pre-existing supports in order to overcome. Narrative reconstruction is crucial to creating a new identity, independent to the ‘sick self’ (Nanton et al., 2016). For some individuals, the ‘sick’ identity prevails, and no equally meaningful identities are restored, leading to worsened psychological outcomes (Lindsay, 2009). This paper will examine the mechanisms through which this occurs by drawing upon literature to examine the voices of those experiencing chronic and life-limiting illness.
The all-encompassing nature of suffering in chronic illness is a concept considered by many pieces of literature, however, one must first dissect the medicalized view of suffering, described as solely physical distress, into the theory of a wider view of suffering, in which both the physical and psychological forms of suffering are considered (Charmaz, 1983). Suffering is all-encompassing (CITE). The very nature of being chronically ill dictates that the individual must deconstruct and reconstruct their life in order to accommodate for a new way of living post-diagnosis. All the illness worsens, and symptoms progress, activities once valued to a person are replaced with medical appointments, tests and contemplating the lasting effects that this may have on ones way of life.
Self-identity becomes prominent at age 3 as the development of the conscious is established. From this time on, it is continually re-worked as new experiences are lived, and is a continuous state of fluctuation and oscillation. Values once held close to individuals may be replaced by new values of equal importance, with the sense of self-being maintained, however, if values are lost, and are unable to be replaced, a loss of self-identity may occur (Bell, Tyrell & Phoenix, 2016).
Chronic illnesses can be debilitating, with a widely varying illness trajectory, triggering a sense of uncertainty due to unreliable symptoms, course of the illness and a generalized fear of the unknown (Saadim, Rassouli, Abbaszadeh, Brant & Majd, 2016). This has been likened to a series of labyrinths (CITE), where although the illness may be the same, every individual will experience a difference illness course, a variety of symptoms, and manage the illness in unique ways. In the pre-diagnosis period, individuals may be experiencing an array of symptoms, with no cause. Often, when reported to health practitioners, ones concerns may be downplayed, creating doubt and uncertainty. Interestingly, during the pre-diagnosis period, some may welcome uncertainty, as it allows for multiple possibilities and trajectories, for example, a lipoma of the breast versus a malignant tumor (Dauphin, 2020).
Chronic illness often have periods of overt illness, followed by a period of remission in symptoms, resulting in individuals both anticipating and fearing the next relapse of symptom. (Bell, Tyrell & Phoenix, 2016). Dauphin (2020) posits that a state of liminality is entered into upon remission or treatment of an illness, in which an individual is no longer the person they once were during the pre-diagnosis period, but is no longer classified as sick. In this liminal state, new identities cannot be formed, as the individual is caught in a perpetual ‘in between’ state.
This is especially prominent in cancer experiences, during remission (Dauphin, 2020), where although the person may physically be well, the psychological suffering remains, affecting the psychosocial wellbeing of the individual.
Ones self of self is often closely intertwined with their perceived roles in life. Chronic illness can be debilitating, and although individuals are often able to maintain a sense of normality in the early stages of the disease, as the illness progresses, maintaining aspects of their life may come at the expense of another aspect. Individuals describe being able to continue working, however sacrificing all other aspects of life. The loss of professional roles is closely related with social standing and financial independence, and when lost, can catalyze a loss of self-identity (Walker, 2010). Not only can the loss of paid employment affect the financial supports of an individual, but can also disrupt daily routines, and
Roles as a mother, father or partner can shift upon the onset of a chronic illness, by way of a loss of physical function, for example, a partner is no longer able to perform garden maintenance and must outsource this work (CITE). As severity of the illness progresses, power dynamics in relationships may shift, as a partner may take on a caring role in the relationship. Individuals speak of their frustrations with their partner taking on a caring role, as their agency within the relationship is diminished. Physical changes during chronic illnesses can precipitate further losses, such as loss of bodily function. Individuals may be forced to restrict daily activities due to new restraints placed upon them by their failing body (CITE). At times, restrictions to daily life may supersede what is necessary, however individuals fear being caught off guard. Charmaz (1983) describes an individual who only leave the home when strictly necessary due to embarrassment about urinary incontinence. A restricted existence post-illness diagnosis results in fewer opportunities to reframe ones identity with a new and meaningful self.