I came across this article yesterday. Titled “Loss of Self: An Examination of one aspect of being chronically ill,” the article adapts information from a sociologist about loss of self to the Parkinson’s Disease world. It was posted to pdcaregiver.org. This article applies to PSP as well.
LOSS OF SELF: An examination of one aspect of being chronically ill
By Joy Graham
Posted to pdcaregiver.org
Our concept of “self” is developed and maintained through the social relationships we have with others. This is a lifelong process which needs daily validation. Those who fall ill suddenly may experience a rapid and traumatic change in the sense of self. Others who have a chronic illness may slip slowly and inexorably towards a recognition of an altered sense of self. For some, there is a comfortable accommodation to the new self–particularly if support mechanisms are well established. For others, this loss of a former self is in itself a grieving process, and as Kathy Charmaz claims, it is “a fundamental form of suffering in the chronically ill.”
The following is what I call an “interaction with a text.” I respond to an article called “Loss of self: a fundamental form of suffering in the chronically ill,” by Charmaz (Sociology of Health and Illness, Vol.5., No. 2, 1983) adapting it to fit the situation which might apply to some people with Parkinson’s Disease (PD). It comes filtered through my own experiences as the spouse of a Parkinsonian and a member of a support group, members of which have all given me insights into what it is like to live with PD.
I take up the discourse, because I agree with her when she says:
The narrow, medicalized view of suffering…ignores or minimizes the broader significance of the suffering experienced by debilitated, chronically ill adults. A fundamental form of suffering is the loss of self in chronically ill persons who observe their former self-images crumbling away without the simultaneous development of equally valued new ones.
Charmaz’ concern is with what happens when images of self are altered as a result of chronic illness.
As background, to what is in sociologist terms, a “symbolic interactionist” approach, Charmaz claims that American families (and I think we could substitute this for “Western” families) are not well structured to handle the strain of caring for an ill member. The Western emphasis–best summed up by the “Protestant Work Ethic” which values hard work; “doing” not “being”; independence; privacy and family autonomy, is an ideology which places an overwhelming strain on the family unit.
Illness is both a physical and psychological process. It is an experience through which a person learns new definitions of self and often relinquishes old ones. The chronically ill person draws upon past experiences and cultural meanings to look at his/her new identity shaped by illness. But what happens when an ill person’s self image is incompatible with his/her past criteria for a valued self? And what happens when others, especially significant others, see an ill person in a way which is at odds with the way the ill person perceives themselves?
Charmaz interviewed fifty seven chronically ill people and although none had PD, their experiences have much in common with anyone who is severely debilitated by PD. She found these individuals suffered from four main problems.
1. Restricted lives
“Loss of control from life [style] restrictions typically results in loss of self…and may foster an all-consuming retreat into illness.”
Narrow, restricted lives contrast sharply with other healthy adults who have ample opportunity for constructing and maintaining their valued selves. “The unpredictable course of many chronic illnesses fosters uncertainty and fear, and as a result, some patients voluntarily restrict their lives more than need be.” When the disease itself causes fluctuations and periods of remission, patients may feel they have to limit social activity, quit work and avoid contacts. “While they aim to ‘protect’ themselves,” Charmaz says, “they may do so at great costs to their self-images.”
“Protection” can take many forms. Reducing one’s lifestyle–for instance, moving prematurely to a unit and away from valued community interaction, can increase loneliness, boredom and isolation. Financial problems may make the ill person feel that they must live “marginally” and give up former social worlds entirely. The subsequent loss of friends results in a loss of prior self-image.
Illness can become the main focus of life for the chronically ill. Such a life revolves around symptoms and treatment. Families and friends often complain that the ill person is consumed with thoughts of self and illness, and previous interests are neglected, leaving a gap which all can feel.
Charmaz believes that when patients are given insufficient information and treatment, or they rely on information from one practitioner or perspective, they may remain unaware of possibilities which could increase their participation in life. This is sadly, often the case for those with PD, who may at times need, but fail to seek out the services of a wide range of health practitioners, such as physiotherapists, psychologists and speech therapists.
Participation in activities previously enjoyed may be limited. The ability to drive, for example, offers proof of freedom and choice. When driving is no longer an option, many feel the resultant restriction. Charmaz emphasizes that this loss of control over one’s life style–losing the right of choice, typically results in a a loss of self.
2. Social Isolation
“Social isolation is a major consequence of a restricted life.” When ill persons can no longer participate in community activities, visitors must come to them. Such visits require extra time and commitment on the part of the visitor, and “past reciprocity becomes altered and the chronically ill are left behind. The inattentiveness of former friends and relatives sometimes shocks ill patients and their intimates.”
It is easy for ill people to drift into isolation, unintentionally. Time, energy or concentration needed to sustain relationships may no longer be available.
“Social isolation increases as the ill person wears out family and friends. Continuous immersion in illness, whether from crisis of fear, also takes its toll on involved others. When so immersed, the ill person frequently remains unaware of the strain on them.” This can be exacerbated when the ill person refuses to seek out or to follow professional advice.
The visible signs of a chronic illness can cause discomfort to friends and acquaintances, as well as for family. Worsening physical ability may mean that a Parkinsonian may not feel comfortable eating in public, for example. This closes off one previously shared social activity and directly affects the spouse/caregiver as well. The seeming apathy of a Parkinsonian may hasten the drift into social isolation. A small child may not feel comfortable snuggling up to a parent or grand-parent whose arm is shaking. What does this do to the self-image of the parent? The grandparent? A couple may find the physical limitations imposed by PD a barrier to intimacy. How does this affect both partners?
Charmaz comments that social isolation is most visible in the chronically ill who live alone. Minimal social contacts–a phone call, a wave from a neighbour, a visit to the doctor, assume tremendous significance. Positive images of self reflected by even the briefest of interaction can help to maintain a positive self-image.
3. Discrediting Definitions of Self
Many Parkinsonians suffer from symptoms which may result in public stigmatization. Children particularly may jeer at someone who is shuffling or shaking. Such “images of self mirrored to these ill persons can be so unexpected or jarring that they shake the very foundations of their self-concepts.” It raises anew questions about identity, even if in the past, disability has been accepted.
“Experiences of being discredited, embarrassed or ignored or otherwise devalued also contribute to the growing isolation of ill individuals and to their subsequent reappraisals of self.” Someone who “talks down” or patronizes an ill person, in a false, cooing way which implies child-status, can devalue and alienate.
Some people may restrict activities rather than risk potential discrediting. Invitations to dinner may be declined. A newly-diagnosed Parkinsonian may take his medication in secret, rather than risk having to tell his work-mates about his disorder. Others may retire unnecessarily early.
“Clearly,” Charmaz says “the relative importance of those who discredit the ill person shape that individual’s self-concept. Images of self reflected by intimates are crucial for sustaining or discrediting of self-concept..”
Supportive carers or intimates can bolster the ill persons’ sense of self. A spouse who gives ample time for responses from a person with slow, slurred speech helps maintain the continuity with past pre-illness relationship. A carer who is skilfully alert to, and in tune with the ill person’s symptoms and needs can protect that person from risky situations which may cause embarrassment. This can be done without diminishing the ill person’s sense of self.
“Those without supportive intimates are more vulnerable to discrediting definitions.” Discrediting definitions of self from health professionals, especially doctors, become increasingly significant for an isolated ill person.
Charmaz notes that doctors often treat undiagnosed persons with esoteric and vague symptoms as neurotics. This is often the case with young-onset Parkinsonians–particularly women–and the frequent repetition of such discrediting stories is in itself, evidence that damage to self-concept has been inflicted.
However, because illness is so stressful, family members may not always be able to reflect positive images of self to the ill person, and may easily discredit them.
Charmaz says that discreditation may occur when the ill person fails to fulfil expectations, whether these are realistic or not. “These expectations may range from sexual activity to household tasks, regimen compliance and companionship.” The ill person will feel discredited if s/he is blamed for being “inattentive or uncaring.” A spouse may believe the ill person is conspiring to undermine them by performing inadequately or relinquishing responsibility. PD has its own unique set of problems due to the on-again-off-again nature of the illness, and change can occur within a very short time. This requires supreme patience on both sides. This feature of PD also provides challenges for health professionals, particularly nurses.
Discrediting definitions are apt to be adopted when the ill person (1) feels vulnerable and (2) identifies with those who discredit and (3) when the discrediting validates a hidden fear or recasts the ill person’s self-image in a new unattractive light.
Charmaz goes on to say that “Much discrediting occurs in more subtle ways.” Tacit devaluation can be implied: the non-ill spouse may interrupt, repeatedly correct or “interpret” in a manner which undermines. Worse still, an ill person may simply be treated as if they are not present, or as a “problem” rather than a participant in any interaction.
Ill people may actively participate in their own discrediting. A home-maker with PD, may make a valiant attempt to live as normally as possible. S/he can suffer great guilt for failing to perform housework to past high standards. Others may hang on desperately to a job, long past the time when they should have given up, despite the knowledge that they cannot perform in the job adequately, and well past the time when others feel they should resign. Charmaz comments that such “stoics” who will acknowledge symptoms only after becoming quite incapacitated are apt to suffer psychologically. “The inability to control one’s self and life in ways that had been hoped for…, or assumed…may clearly lead to self-discreditation and self-blame…. Attempts at returning to the normal world [work, for example] and failing, brings profound disappointment and grief for their lost self-images.”
“Self-discreditation begins, when ill persons can no longer take for granted some valued attribute or function (e.g. sexual functioning) which they view as fundamental for a positive self-image.”
Naturally, this failure to come to terms with a changing and changed definition of self has a negative effect on the family. “The pathos of the ill person who cannot accept dependency permeates the existence of caregivers.”
4. Becoming a Burden
“The sense of ‘becoming a burden’ may follow closely upon loss of hope and loss of recapturing positive self-images of the past.” With little power over the quality of their life, being immobilized and physically dependent, “illness” becomes the major source of social identity. This “stands in symbolic contrast to the way these persons wish to conceive of themselves…Becoming a burden symbolized that the person can no longer claim identities based on prior activities, interests or pursuits.” As the ill person focuses inward, interactions and relationships shift.
With a heightened self-concern, the chronically ill person becomes hyper-sensitive to anyone who may discredit them. Chronic illness fosters greater dependence on others for self-definition, just at a time when bonds to others may weaken, when isolation and loneliness intensifies, and when care-givers and friends are often overwhelmingly exhausted. At a time when they need more social contact to preserve their crumbling self-images, the chronically ill are less capable of maintaining relationships. Worse still, Charmaz concludes, if they openly reveal their suffering, they may further estrange those who still take an interest in them.
Conclusion: I think we must agree that self-concept may change with chronic illness. But such change, does not have to be as bleak and despairing as Charmaz depicts. At the outset, I made the point that “there may be a comfortable accommodation to the new self.” With the majority of Parkinsonians, this is the case. I have met many severely disabled Parkinsonians whose self-concepts are still as healthy as they always were, and who have gained new strengths from their disabilities.
We can learn much about the human psyche from the chronically ill, because being on the razor’s edge sharpens our perceptions of self and others. Carers, family, friends and health professionals must all take responsibility for helping people not only to “accommodate” themselves to PD, but to encourage new and validatory self-concepts. Charmaz has given us many pointers in this respect. Parkinsonians must also be willing to learn how to help themselves. This is the “raison d’etre” of the Parkinson’s Association, and for support groups.