A Narrative Review of the Impact of Disbelief in Chronic Pain
Although the experience of being believed is frequently alluded to in chronic pain literature, few studies have specifically explored this phenomenon and even fewer reviews have been offered. This narrative review sought to explore the wider social context in which individuals with chronic pain may experience disbelief toward their pain. Articles were obtained through a search of eight databases and a hand search of the references of full-text papers. Key results within the articles were noted and integrated to form three main themes: stigma, the experience of isolation, and the experience of emotional distress. The experience of stigma can occur in a number of ways. It may be through actual or perceived encounters with others; it can be through the use of psychologic explanations of pain; it can come through a perceived challenge to one's integrity and subsequently affect an individual's identity; and such stigma may be influenced by negative female stereotypes. The loss of relationships associated with being disbelieved can lead to the experience of isolation. This may be self-initiated, particularly when an individual has been given a contested diagnosis. Finally, disbelief can lead to emotional distress. This can take the form of guilt, depression, and anger. Throughout the article, implications for health care professionals, working with individuals living with chronic pain, are discussed.
Pain is famously defined by Margo McCaffery (1968) as "whatever the experiencing person says it is, existing whenever he says it does" (McCaffery & Pasero, 1999, p. 17). To act in accord with this definition of pain, one must take the words of the patient at face value. The practitioner must accept the patient's subjective report as being so. Therefore, the experience of having one's pain disbelieved may be described as the failure to accept an individual's account of his or her pain as true.
The reader should note that within the literature a similar concept is known as delegitimation. Norma Ware (1992), drawing on the work of the anthropologist Arthur Kleinman, defined delegitimation as "the experience of having one's perceptions of an illness systematically disconfirmed" (p. 347). Within her work in Chronic Fatigue Syndrome (CFS), Ware highlights examples of delegitimation, such as others rendering an individual's symptoms as trivial or psychologic. The concepts of being disbelieved and delegitimation are similar but not entirely synonymous. Perhaps a key difference is that an individual may have his or her experiences unintentionally discounted by others and thus experience delegitimation. This does not necessarily mean that the other person disbelieves the individual's pain account. The focus within this article will be on the disbelief of chronic pain, i.e., pain that has persisted for ≥3 months (Bond et al., 2006).
The initial starting point for this review followed contact with a review article by Clarke and Iphofen (2005). They offer an overview of the literature regarding the relationship between the health care professional and the patient in believing the patient's pain. A number of issues are highlighted. First, if patients are not taken seriously, this could compromise the accuracy of pain assessment. Second, regarding a study conducted by Werner and Malterud (2003), in which patients invest considerable amount of effort in maintaining a credible image, Clarke and Iphofen conclude that health care staff are "responsible for recognizing the suffering of the patient and should consequently aim to prevent further disempowerment" (p. 491). A third issue is that of labeling. Clarke and Iphofen suggest that labels are important in conveying the professional's belief in the patient's pain, although care is needed to ensure such labels do not disempower patients in their recovery.
Clarke and Iphofen offer an informative review with noteworthy recommendations for clinical practice. However, their review is restricted to the belief of chronic pain within the health care setting. The present authors sought to consider the wider social context (including the health care setting) in which individuals with chronic pain may experience disbelief toward their pain, for instance, within their workplace, neighborhood, and family. The focus of the present article, therefore, is on the consequences surrounding the disbelief of chronic pain and the ensuing implications this may have for health care professionals.
Abstract and Introduction
Abstract
Although the experience of being believed is frequently alluded to in chronic pain literature, few studies have specifically explored this phenomenon and even fewer reviews have been offered. This narrative review sought to explore the wider social context in which individuals with chronic pain may experience disbelief toward their pain. Articles were obtained through a search of eight databases and a hand search of the references of full-text papers. Key results within the articles were noted and integrated to form three main themes: stigma, the experience of isolation, and the experience of emotional distress. The experience of stigma can occur in a number of ways. It may be through actual or perceived encounters with others; it can be through the use of psychologic explanations of pain; it can come through a perceived challenge to one's integrity and subsequently affect an individual's identity; and such stigma may be influenced by negative female stereotypes. The loss of relationships associated with being disbelieved can lead to the experience of isolation. This may be self-initiated, particularly when an individual has been given a contested diagnosis. Finally, disbelief can lead to emotional distress. This can take the form of guilt, depression, and anger. Throughout the article, implications for health care professionals, working with individuals living with chronic pain, are discussed.
Introduction
Pain is famously defined by Margo McCaffery (1968) as "whatever the experiencing person says it is, existing whenever he says it does" (McCaffery & Pasero, 1999, p. 17). To act in accord with this definition of pain, one must take the words of the patient at face value. The practitioner must accept the patient's subjective report as being so. Therefore, the experience of having one's pain disbelieved may be described as the failure to accept an individual's account of his or her pain as true.
The reader should note that within the literature a similar concept is known as delegitimation. Norma Ware (1992), drawing on the work of the anthropologist Arthur Kleinman, defined delegitimation as "the experience of having one's perceptions of an illness systematically disconfirmed" (p. 347). Within her work in Chronic Fatigue Syndrome (CFS), Ware highlights examples of delegitimation, such as others rendering an individual's symptoms as trivial or psychologic. The concepts of being disbelieved and delegitimation are similar but not entirely synonymous. Perhaps a key difference is that an individual may have his or her experiences unintentionally discounted by others and thus experience delegitimation. This does not necessarily mean that the other person disbelieves the individual's pain account. The focus within this article will be on the disbelief of chronic pain, i.e., pain that has persisted for ≥3 months (Bond et al., 2006).
The initial starting point for this review followed contact with a review article by Clarke and Iphofen (2005). They offer an overview of the literature regarding the relationship between the health care professional and the patient in believing the patient's pain. A number of issues are highlighted. First, if patients are not taken seriously, this could compromise the accuracy of pain assessment. Second, regarding a study conducted by Werner and Malterud (2003), in which patients invest considerable amount of effort in maintaining a credible image, Clarke and Iphofen conclude that health care staff are "responsible for recognizing the suffering of the patient and should consequently aim to prevent further disempowerment" (p. 491). A third issue is that of labeling. Clarke and Iphofen suggest that labels are important in conveying the professional's belief in the patient's pain, although care is needed to ensure such labels do not disempower patients in their recovery.
Clarke and Iphofen offer an informative review with noteworthy recommendations for clinical practice. However, their review is restricted to the belief of chronic pain within the health care setting. The present authors sought to consider the wider social context (including the health care setting) in which individuals with chronic pain may experience disbelief toward their pain, for instance, within their workplace, neighborhood, and family. The focus of the present article, therefore, is on the consequences surrounding the disbelief of chronic pain and the ensuing implications this may have for health care professionals.