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11 Articles in Volume 21, Issue #1
Advanced Practice Matters with Theresa & Jeremy: Mentorship
Ask the PharmD: What is a true opioid allergy?
Behavioral Medicine: How Clinicians Can Reduce the Stigma Attached to Chronic Pain
Chronic Headache: How to Conduct a Virtual Neurological Examination
COVID-19 Long Haulers: A Look at Cardiovascular Risk
How COVID Has Changed Pain Practice and Policies
How to Conduct a Pain Evaluation Using Telemedicine
Inside the Potential of Biologics for the Treatment of Rheumatoid Arthritis
Managing Pain in Parkinson’s Disease
Spinal Cord Stimulation Shown to Improve Pain and Movement in Parkinson’s Disease
TeleRheumatology Before and During the COVID-19 Pandemic

Behavioral Medicine: How Clinicians Can Reduce the Stigma Attached to Chronic Pain

A review of workable interventions to address the stigma faced by patients living with chronic invisible illness.

There is substantial evidence that individuals with chronic pain commonly experience stigmatization by others.1 The result of a devalued personal quality that deviates from the expected norms in medical and broader social settings2  is not new in the field – a decade ago, the Institute of Medicine (IOM) reported testimonies from more than 2,000 individuals with chronic pain, their family members, and caregivers who described stigma.3

People living with chronic pain often share that they do not feel believed by romantic partners,1 relatives,4 friends5 – or even their healthcare providers.6 Moreover, the general population is less inclined to help,7 feel less sympathy, dislike, or are distrustful of people who have chronic pain that is “invisible” and/or not accompanied by a clear biomedical explanation.8

Several pain groups report higher rates of stigmatization, including those with chronic facial pain,9 fibromyalgia,10 chronic fatigue syndrome,11 whiplash,12 nonspecific low back pain,13 rheumatoid arthritis,14 and/or a somatoform disorder.15 Stigma has been found to have adverse consequences on treatment and outcomes for patients with chronic pain conditions. Efforts have been made to better understand the stigma associated with chronic pain in order to improve outcomes – as described herein – but there is more work to be done.

Stigma is first thought of as a social identity quality that varies from the dominate culture and is identified by the dominant culture as a salient difference. The label then becomes informed by stereotypes creating a “us and them” in- and out-groups. (Image: iStock)

Deconstructing Stigma

Stigma is predominately explored in the social sciences research literature through a socio-cognitive framework. As a result, the term is viewed as malleable, changing over time and circumstance. Several definitions of stigma exist in the literature. For the purposes of this review, we have integrated several important qualities of stigma reported in the research.

Stigma is first thought of as a social identity quality that varies from the dominate culture and is identified by the dominant culture as a salient difference. The label then becomes informed by stereotypes creating a “us and them” in- and out-groups.16 Next, the salient difference is devalued by the dominate group.17,18 Finally, discrimination based on the identified quality occurs.19 These steps are supported – if not required – by power differences (eg, social, economic, and political) that are often accompanied by individual and structural discrimination.

Sociologist Erving Goffman (1963) unpacked the “two faces” of stigma by exploring the question, “Is stigma a personal attribute or social label?”17 When stigma is seen as a label or stereotype by others, it belongs to the labeler not the target of the label.17,20 Therefore, much like the conversations being held around the country regarding systemic racism, the bulk of the work needed to destigmatize chronic pain conditions and address its adverse consequences lies with the labeler, not the individual with chronic pain.

While the labeler is initially responsible for the impact of stigma, patients with chronic pain often internalize stigma directed at them. Internalized discrimination then operates through the stigmatized person’s beliefs and behaviors. Goffman (1963) further reports on the self-fulfilling prophecy potential of stigma, in that those with power can alter the self-image of the target.17 An investigation into internalized stigma and its impact on 92 patients who suffer from chronic pain found that 38% reported internalized stigma. Results indicated that internalized stigma negatively correlated with self-esteem and pain self-efficacy, after controlling for depression. Internalized stigma was also associated with cognitive functioning in relation to pain, and resulted in a greater tendency to catastrophize and a reduced sense of personal control over pain.21

 

Cultural & Social Norms

The cultural and social norms in the US include the expectation for objective, observable evidence of a pain condition – people anticipate improvement when the condition is treated with the traditional methods used in the Western healthcare system.4 With chronic pain, there is often no observable cause, thereby challenging the legitimacy of the patient’s experience. These norms have been shown to generalize beyond the dominate culture. For example, when a group of Mexican-American women with chronic pain were asked to describe stigmatizing experiences, they found that these norms created suspicion and subsequent stigma on the part of the family, workforce, and others who suffer from pain.4  

Stigma matters most to people with chronic pain in clinical settings, which may lead to underassessment and underestimation of pain by the healthcare system.22 The beliefs of patients and health professionals may be entirely opposed – patients seeking biomedical explanations and providers offering psychosocial interventions.23 Healthcare staff may discount a patient’s self-report of pain,24 be skeptical and distrust the reality and the extent of the patient’s suffering,25 and may over-psychopathologize the pain, which can lead to undertreatment.26 Other barriers rooted in the current healthcare system may include unmanageable workloads, compassion fatigue (ie, burnout), and/or negative empathy.27 Negative empathy is defined as a decline of empathy that occurs during medical and other healthcare education.28

Physicians tend to be viewed in Western culture as aggressive, intelligent, free-of-error scientists battling disease who are lone decision-makers.29 These views privilege providers and reinforce a power hierarchy in the relationship between practitioners and patients. Patients commonly report stigma from HCPs, including the belief that their reported pain is exaggerated30 and/or imagined,31 or that they are somehow personally responsible for their chronic pain.13 As a result, patients with chronic pain may not advocate for their needs when they feel misunderstood or undertreated. Further, narrative accounts of people with chronic back pain found that themes of stigma were related to encounters with healthcare, social security, and other legal systems, and physical, psychological, and social loss.32

One way to measure perceived stigma and associated factors is by using the Chronic Pain Stigma Scale (CPSS).33 The CPSS is a 30-item Likert-type instrument that measures stigma from the viewpoint of the general public, physicians, and family and across several dimensions of stigma (estrangement, attribution to psychological cause, malingering, bias against opioid analgesics, and general negative attitudes). Higher values of total scores indicate greater perceived stigmatization. The instrument has been validated for further use and may prove to be an asset to use in practice.

 

What Variables Impact Stigma?

Several factors have been found to contribute to the stigmatization of people with chronic pain. For starters, chronic pain is, for most, a less relatable experience compared to acute pain,34,35 explaining the lack of sympathy often found for individuals with chronic pain.8Additionally, one study found that patients displaying protective pain behaviors were viewed as less likable, less dependable, and less likely to return to work by observers.36 Another contributor to stigma may be the extent to which the person with chronic pain is judged by the public to be personally responsible for their plight or the attribution of causality.37 Finally, HCPs often report feeling uncertain or unprepared to manage patients with chronic pain.33,38-39

The impact of stigma on people with chronic pain has been commonly associated with depression.40 Likewise, it has been associated with decreased self-esteem, strained interpersonal relations, and lowered quality of life.16 The reason may be that stigmatizing reactions from others challenges maintenance of their own sense of self-esteem and dignity.31

 

Ways HCPs Can Reduce Stigma around Chronic Pain

Interventions addressing stigma in the social sciences can be organized into three categories: intrapersonal, interpersonal, and structural.2 However the evidence supporting the effectiveness of these strategies is largely lacking. Intrapersonal interventions are directed towards people with chronic pain on how to deal with stigma. They include self-management strategies, which emphasize active participation in multiple personal and social tasks involved in long-term conditions.41 However, self-management alone may be a counterproductive pursuit for many people with chronic pain. Patients may make every effort to acquire and comply with medical advice, but these efforts may not be met with the support or autonomy they desire or expect.42

Cognitive-behavioral therapy (CBT) has been found to reduce anxiety and pain-related disability, but has not been found to reduce perceived stigma.43 Acceptance and commitment therapy (ACT) may prove to be beneficial as it aims to enable the patient’s ability to adapt to fluctuating situational demands, reconfigure mental resources, and shift their perspective and balance competing desires, needs, and life domains.44

Interpersonal interventions involve all stakeholders and can create environments that respond in a less prejudiced manner. Health coaching for both the patient and the provider aims to increase the effective management of the medical encounter.45 An important aspect of interpersonal intervention includes finding a way for the patient to explain their pain to others and to set appropriate boundaries.46 From a provider perspective, something as simple as acknowledging that a patient’s condition has a name and is a legitimate illness is immensely reassuring and empowering.47

Structural interventions can take the form of changes in policy. Stigmatization can be reinforced by media portrayals and public attitudes and behaviors and can lead to the patient concealing their pain and/or social isolation.1 Public policies, like the National Pain Strategy (2010) in Australia, propose more comprehensive education and training in pain management.48 In the US, a primary focus should be to educate and change public views toward chronic pain.43 In fact, the IOM report (2011), Relieving Pain in America, called for “a cultural transformation in the way pain is viewed and treated.”3 This report led to a major push in the pain community to adopt and promote an integrated biopsychosocial model.22 Government task forces have since recommended that if pain persists beyond three to six months, or the normal time of healing, then a biopsychosocial informed treatment should be used.

Commentary

Stigma is a social construct and stigma towards the chronic pain population is no exception. What is seen as undesirable and different tends to change over time. The transient-ness of stigma, therefore, offers hope that stigma related to chronic pain can be minimized and its adverse impacts buffered.

Individuals living with chronic pain report having difficulties feeling heard and appropriately treated by healthcare providers, and these challenges worsen in the BIPOC population. These difficulties appear to be fueled by stereotypes assigned to them. This, in turn, impacts effective treatment and may result in internalized stigma that worsens pain experiences and impacts self-esteem. This negative effect on a patient’s self-concept further reduces the chances for effective treatment outcomes.

Fortunately, what is different and undervalued today can become a less salient difference without value-laden stereotypes through efforts by those in power in the future. To address the adverse impact of stigma – including provider biasand internalized stigma – changes are needed throughout the healthcare community. A call for increased education on the impact of chronic pain stigma and its adverse consequences, as well as the use of a biopsychosocial model to assess and treat the many aspects of chronic pain, is necessary.

Last updated on: January 5, 2021
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