Serious chronic illness challenges the unity between body and self and forces identity changes. Self and identity are core aspects of everyday experiences which is why perhaps the most difficult transition with chronic illness is the loss of identity one held before becoming sick. The body, which in many social situations is a taken for granted aspect of the person, ceases to be taken for granted once it malfunctions and there is usually a complete restructuring of the way they define themselves and the ways in which they interact with the world. The work of rebuilding their life and identity can be further complicated by insufficient medical knowledge and the loss of supportive relationships that sometimes follow the onset of serious illness. Living with chronic illness is therefore a life-long process that will require ongoing adjustment and re-adjustment of everyday and each situation.
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When a person starts suffering from a serious chronic illness, the unity between that person’s body and self is severely undermined and this discrepancy forces identity changes. Now this person has to adapt and adapting basically means changing their life and self to accommodate to their ‘new’ body while resolving the lost unity between body and self. It also means struggling with rather than against the illness.
Chronic illness assaults the body and threatens the integrity of self. Having a serious chronic illness shakes earlier taken-for-granted assumptions about possessing a smoothly functioning body – now death becomes more tangible and real. It also has a profound impact on that person’s life and creates a lot of grief in response to the losses it imposes on their lives. Consequences such as loss of productive function, financial crises, family strain, stigma, and a restricted existence have a devastating impact on the affected persons and not only do they lose their self-esteem but sometimes even their own identity. Naturally, suffering such losses results in a diminished self.
Perhaps what is most debilitating for chronically ill persons is that they gradually start to experience a crumbling away of their former self-images without developing equally valued new ones. Not only are they experiencing physical pain but they also have to deal with their own emotional pain – their whole life, their hopes and dreams have to be brought into perspective. Their life becomes divided into a before and after and most importantly they have to accept that the person before the illness can no longer be, things have changed and will continue to change.
Kelly and Field in their paper “Medical sociology, chronic illness and the body”, point out that from the perspective of the person who has the illness and in whose body the physical or psychological pathology exists, the illness will be felt in a variety of ways. There may be intrusive symptoms such as pain or nausea. There may be interruptions to usual physical and social routines. There may be cognitive disorientation and confusion and the behaviour patterns of self and others may take on new and particular forms.
They also argue that the extent to which the illness affects the person’s identity and their concept of self might depend on the ‘visibility’ of the illness. An illness like diabetes is invisible to all but intimate others. Hence identity may remain unchanged. However, the individual’s sense of self will be intricately tied into the routines attached to managing the illness with respect to physical activities like insulin regimes, urine testing and dietary control. So long as the self-management practices remain private or concealed in ordinary interactions, the identity of a well person can be maintained. In some cases, maintaining a facade that everything has remained the same becomes of paramount importance to the individual.
In contrast, someone whose condition is visible and cannot be hidden, for example if they are in a wheelchair, or someone with psoriasis may have a harder time to cope with their disease. Their identity is forced to change suddenly rather than them coming to terms with the condition on their own. The reception they receive from others will have a profound impact on their new identity – if they are demeaned and discredited by those around them, then maintaining a positive self-image becomes problematic and social isolation would probably occur.
Kelly and Field also point out that sometimes identity crises are kept well hidden. When confronted with the idea of death, some people go in immediate denial, refusing to comprehend what is happening to their once normal functioning body. Someone in the early stages of cancer might appear as if they are coping well to those around them – their workmates, their neighbours and sometimes even to their own families as their identity remains unaltered until either they show external signs of deterioration or when they finally break down as they ruminate on their own mortality.
Bury in his piece “Chronic illness as a biographical disruption” points out that the feeling of uncertainty in the experience of illness, and especially chronic illness, is widely recognised (Davis 1960, Wiener 1975). In the particular case of rheumatoid arthritis the emergence of obvious signs of disability, can become overriding. Unfortunately as Bury observes, in some instances affected individuals were ‘taken over’ by the disease. Zola (1982: 222) believes that the lack of acceptable means to express anger also results in anger turned inward, a form of depression.
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Bury further points out that access to medical knowledge is of paramount importance, especially in the case of chronic illness since it offers an opportunity to conceptualise the disease and separate it from the individuals self. However, a strict separation of disease and self is difficult to obtain – the experience of the patients in Bury’s study shows that patients approached the specialist with mixed feelings. On the one hand, they wanted confirmation of their ailment and its causes and on the other hand there was nothing that the doctors could do in effecting a cure. The drugs could only help to a certain extent and soon they learned that the main issue was going to be learning to live with it. Medical intervention is therefore both important and limited.
Being told that they had rheumatoid arthritis elicited numerous reactions, some expressing relief whilst others were beset with fear, especially about their future. Many of them diagnosed with this condition saw a future of growing dependency and invalidity, their concept of self changed rapidly. Other respondents indicated that they were still figuring things out which highlights the fact that identity views were constantly shifting over time and situationally.
Adapting to their ‘new’ body according to Kathy Charmaz in her paper “The body, Identity and Self: adapting to impairment”, takes people with serious chronic illness on an odyssey of self. As soon as their condition is confirmed by a medical doctor, the affected individual might start seeing their body as alien especially since their body is posing new constraints and a total re-evaluation of their past life has to take place and it is only when they start to re-construct their self and their identity do these people learn to live with their illnesses.
Yet, Charmaz points out that this process for regaining back control over their own body and their lives is tumultuous, rather they “repeat their journey on the same terrain over and over and, also, find themselves transported to unplanned side trips and held captives within hostile territories as they experience setbacks, flare-ups, complications, and secondary conditions”. However, it is through these setbacks that for some of the sufferers their self becomes more resolute with their wish to regain back a sense of normalcy overriding all secondary conditions. In the end, some of these people might end up with far stronger characters than they had before the illness, especially if their condition is visible. On the other hand, depending on the nature of the illness, other sufferers might become more dependent on those around them, relying heavily on reflection of self by others and their isolation and loneliness intensifies.
It is only when these people attempt to reconcile their self to their illness do they start to acknowledge that their body and subsequently their life has changed and that they need to adapt to these changes. In the end, some people never adapt to their illness while others might refuse to admit that they have suffered losses. Still others adapt to their changing bodies only long after suffering losses [citation]. Adapting to an impaired body means resolving the tension between the body and self elicited by a serious chronic illness. Hence successful adaptation means living with illness without living solely for it.
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