Stigma in bipolar disorder: A current review of the literature

Abstract

Stigma has been found to have an impact on those living with bipolar disorder, with many experiencing negative consequences of stereotypes, prejudice and discrimination as a result of their condition. The aim of this review was to assess the current literature in bipolar disorder to determine the impact of stigma on people living with this condition and caregivers. Public stigma was associated with greater functional impairment, anxiety and poorer work-related outcomes, while self-stigma was also found to be associated with lower levels of functioning across a range of domains and greater depressive and anxiety symptoms. For those with bipolar disorder, public stigma was reported at similar rates to those with schizophrenia and depression in some studies, with other studies noting mixed results. Qualitative studies noted that public stigma and discrimination were experienced from family, friends and healthcare providers. Self-stigma was found to be higher for those who were younger in several studies and associated with worse medication adherence. It was generally found to be higher in bipolar disorder participants than in those with anxiety disorders and lower than those with personality disorders. Limitations of the current research include the following: few studies have used a longitudinal design, few have assessed the impact of stigma on medication adherence and few have explored these issues in younger populations. More research is needed to explore the experiences of self-stigma for those in the younger age group specifically, given the relationship between younger age and greater self-stigma noted in several studies and the relationship between this and lower treatment adherence.

Introduction

Bipolar disorder (BD) is a chronic mental health condition, characterised by hypo/mania and periods of depression. Most people living with this condition will experience multiple episodes throughout their lifetime, leading to significant occupational and social functioning impairment. Individuals living with BD may be particularly vulnerable to experiencing both stigma and self-stigma, given the chronic and lifelong nature of the condition and its impact (Hawke et al., 2013), where symptoms of BD may be misunderstood by family, friends and professionals (Ladd, 2018). Consequently, understanding the experiences of both stigma and self-stigma is particularly important as these may have an impact on long-term outcomes for people living with this condition.

Stigma has been long argued to have a significant impact on those living with a mental illness, with people experiencing several types of stigma such as public stigma, self-stigma and structural stigma. ‘Public stigma’ refers to stereotypes, prejudice and discrimination that may be held about a person with a mental health condition, while ‘self-stigma’ is the internalisation of these negative beliefs, resulting in self-agreement with such beliefs about mental illness. ‘Structural stigma’ refers to the systematic stigma that people can experience, such as institutional policies and cultural norms (Bonnington and Rose, 2014). Stigma types may also interact, thus compounding and heightening the experience of stigma overall. For example, increased experiences of public stigma may increase self-stigma, while greater levels of structural stigma may increase both public and self-stigma and may further perpetuate stereotypes about mental illnesses. Public stigma may also be experienced by family members along with self-stigma, also known as affiliate stigma, where negative beliefs and stereotypes about mental illness can also be internalised (Chang et al., 2016).

All types of stigma may have a significant impact for those living with BD, potentially resulting in a major impact on help-seeking and service utilisation. However, stigma may also be more complex, intersecting with other areas such as educational and employment status (Staiger et al., 2018). As such, people living with BD may experience several forms of stigma and self-stigma in a range of areas, intersecting with other factors, such as demographic characteristics (i.e., age and gender), which may further contribute to barriers to treatment seeking and care.

Public stigma in BD

Public stigma refers to discrimination and stereotypes held towards a condition in the general community and is experienced by many living with BD, with a systematic review noting many studies reporting that the public (students, professionals and other groups) viewed BD similarly to schizophrenia (Ellison et al., 2013). Although positive media has increased around BD, with many documentaries and media about BD increasing awareness of this condition, previous research has noted that misunderstanding is also high, with many people confusing BD with other conditions (Ellison et al., 2013).

Public stigma and functioning

For people living with BD, higher stigma experience scores were associated with greater functional impairment (Thomé et al., 2012) and increased social anxiety (e.g., Ellison et al., 2013). Greater reported stigma and exclusion at work have also been found to be associated with unemployment, with higher degrees of depression and conflict at work being associated with greater work impairment for those with BD (O’Donnell et al., 2017).

Of the previous research that has reported follow-up data in stigma, it was found that stigma was associated with worse social adjustment at follow-up for those living with BD (Ellison et al., 2013); however, recent research has found that perceived stigma was not associated with mood episode recurrence (hypo/mania or depression) at 24-month follow-up (Nilsson et al., 2016), suggesting that the impact of stigma may be greater in areas of functioning, rather than in mood symptoms specifically.

Public stigma in BD compared to other diagnostic groups

Several recent studies that have compared stigma experiences in those with BD with those with a range of other conditions including depression, schizophrenia (Hamilton et al., 2016; Karidi et al., 2015) anxiety disorders and personality disorders (Hamilton et al., 2016) have produced some inconsistent results. For example, in some studies, no differences have been found in discrimination or stigma between BD and schizophrenia or other mental health diagnoses samples (Hamilton et al., 2016), although others have noted differences in stigma scores between the two diagnostic groups, with schizophrenia reporting higher stigma than those with BD on domains such as perceptions of social stigma (Karidi et al., 2015).

It is unclear why differing results have been found; however, it may be that the setting and context may have a particular role in the experience of stigma for people living with mental illness, and BD in particular. For example, Hamilton et al. (2016) noted that the length of time engaged in mental health services was significantly associated with higher experienced discrimination across all diagnostic categories, suggesting that the experience of using public mental health services in themselves, rather than the diagnosis, may be associated with increased stigma. While broader sampling is required to understand the stigma experienced and the differences between diagnostic categories, it would be important to determine the impact of public mental health service use on stigma experiences for people living with BD specifically and to assess whether there are differences in stigma experiences between those who use public compared to those who primarily use private care. It may be that those living with BD who utilise public health services experience specific stigma compared to those in private settings.

Further qualitative research could also clarify the nature of these stigmatising experiences to determine whether they are associated with public mental health care service use for those living with BD. As noted by Bonnington and Rose (2014), structural elements, institutions, social roles and systemic relations between these may be important to take into account when considering the experience of stigma where participants reported specific stigmatising experiences in the context of hospitalisations.

Although assessing differences between BD I and II is important as these have different illness features which may have an impact on stigma experiences, few studies have assessed this directly. Although one study has previously found no difference between BD I and BD II in terms of stigma scores (Mileva et al., 2013), many studies have not assessed or compared differences between BD I and BD II samples on stigma. More research is needed to explore how BD I and BD II may differ in areas of self-stigma and stigma and further whether people may experience differences in areas of impact, such as work or global functioning, as a result of differing levels of stigma.

Other studies have compared stigma experiences in different countries, with mixed results being found (Ellison et al., 2013). At this stage, more work is needed to understand the cultural impacts of stigma for those living with BD, and more refined measurement is needed in this area.

Discrimination and stigma

Some qualitative design studies have found that participants living with BD also reported stigma experiences or discrimination from health care professionals, family and friends, police, employer, and housing and welfare agencies (Bonnington and Rose, 2014; Ladd, 2018). Specifically, participants in Ladd’s (2018) study reported stigma experiences from social workers, psychologists, psychiatrists and primary care doctors when receiving mental health care during pregnancy and postpartum which participants believed was caused by a lack of understanding about BD. Bonnington and Rose’s (2014) study reported marginalisation, among other experiences, whereby participants described being treated differently in the workplace or other settings due to their illness, such as when trying to obtain insurance. Some participants reported specific stigma experiences from family related to their cultural background, where BD was not accepted as a condition in their culture (Michalak et al., 2011).

Self-stigma in BD

There has been an increasing interest in self-stigma in mental health research broadly across a range of diagnoses. Self-stigma is the internalisation of negative stereotypes and beliefs about an illness, where people living with this condition may agree with widely held prejudices and negative beliefs about their illness. Self-stigma may be important to assess in BD given that it can have an impact on treatment seeking, and in particular, it may have a greater impact on treatment seeking when depression severity is higher (Fox et al., 2018).

Self-stigma and functioning

Several studies on BD have found that greater levels of self-stigma overall are associated with lower levels of functioning on global measures (e.g., Ellison et al., 2013), suggesting that self-stigma has a significant impact on those living with this condition. However, although a relationship between self-stigma and functioning has been clearly identified, the directionality of this relationship remains uncertain. Some studies have indicated a relationship between depression severity and self-stigma, with these being further associated with lower functioning (e.g., Ellison et al., 2013). Others have also found that depression was associated with greater self-stigma (Gilkes et al., 2019) and that self-stigma was associated with greater levels of anxiety (e.g., Ellison et al., 2013). This may indicate that rather than self-stigma alone being associated with lower levels of functioning, it may be that increased self-stigma is associated with greater depressive symptoms, which may then lead to poorer global functioning. Longitudinal studies exploring the relationship between functioning and self-stigma over time are required to determine how self-stigma may change across mood episodes and how these may potentially fluctuate due to symptom changes, particularly during periods of depression.

Some other studies have reported associations with self-esteem, with higher levels of self-stigma being associated with lower levels of self-esteem (e.g., Ellison et al., 2013). In one study, social anxiety was found to be associated with both greater self-stigma and lower self-esteem for those with BD during remission (Fox et al., 2018), suggesting that this association may occur independently of depression severity.

Poorer perceived cognitive functioning has been found to be associated with greater self-stigma for people living with BD (Gilkes et al., 2019), while others also have explored the relationship between quality of life and stigma/self-stigma (Post et al., 2018), with some noting a significant association between quality of life and self-stigma measure scores. However, despite this, it has been noted that quality of life is still lower for those with BD compared with control participants, even when self-stigma is low (Post et al., 2018).

Age and self-stigma

Age has featured as important in several studies, with lower age being found to be associated with higher levels of self-stigma (Gilkes et al., 2019). While treatment variables such as medication adherence have only been assessed in relation to self-stigma in a handful of studies, those that have assessed this have noted that older adults had lower levels of self-stigma compared to younger people, while those who were younger also had poorer adherence (Hajda et al., 2016).

Stigma and self-stigma may occur in a variety of different forms in areas such as language and behaviours, suggesting that it is a multi-faceted experience having an impact on identity. Qualitative results have indicated that internalised stigma is common and needs to be addressed to move forward after receiving a diagnosis of BD (Michalak et al., 2011). Some participants specifically spoke of holding greater self-stigma when first diagnosed, believing that BD represented being ‘flawed’ in some way. Following this, participants then described gradually adjusting to the diagnosis over time, leading to lower levels of self-stigma and greater acceptance (Michalak et al., 2011). Others assessing the views of young people with BD have found that young people report high self-stigma, felt shame about their diagnosis, and that family and friends did not understand the condition (Noack et al., 2016). These domains may be important to particularly address in young adult samples with BD when considering the development of psychoeducation or counselling programmes that address self-stigma.

Self-stigma in BD compared to other diagnostic groups

Several studies have compared self-stigma scores in those with a BD diagnosis to those in other conditions such as schizophrenia (Chang et al., 2016), personality disorders (Filion-Quenneville et al., 2020; Hamilton et al., 2016), ADHD (Filion-Quenneville et al., 2020), anxiety and major depressive disorder (Chang et al., 2016). In general, those with BD report higher levels of stigma impact and self-stigma than those with anxiety disorder, with similar rates to depression (Chang et al., 2016), but lower levels compared to those with schizophrenia in some (Karidi et al., 2015) but not all studies (Chang et al., 2016) and lower levels than for those with personality disorders (Filion-Quenneville et al., 2020).

As with the research in public stigma, it is unclear as to why there are inconsistent findings across studies. A possible explanation is that these studies cover a range of different populations from different countries (e.g., Taiwan, Switzerland and the United Kingdom); it may be that more research needs to be conducted in larger samples in these populations to determine clearer results. Sample sizes reported in these studies were generally low, with most reporting BD samples of less than 70 participants each (e.g., Filion-Quenneville et al., 2020), with some reporting sample sizes as low as 30 participants (Chang et al., 2016).

BD caregiver stigma experiences

Many caregivers report stigma experiences due to living and caring for someone with BD. Some studies have noted that this stigma can have a significant impact on family and caregivers, with those reporting higher stigma also reporting poorer coping and lower social support in several studies. It has been noted previously that caregiver stigma remains stable over time (e.g., Ellison et al., 2013), suggesting that this stigma is not associated with mood symptoms or other changes which may occur in the illness course for the family member with BD.

Lower income and poorer functioning have been reported as being associated with greater stigma in some studies, along with ethnicity in other studies (Ellison et al., 2013). One study noted that BD I but not BD II was associated with caregiver stigma (Ellison et al., 2013); however, this was one of the few studies to compare bipolar sub-types in this area. Another qualitative study assessed attitudes to genetic testing for BD, with family participants noting that a genetic explanation may potentially decrease stigma experiences (Meiser et al., 2005). This may further suggest that education programmes may be needed to assist in managing the stigma that caregivers experience. The impact of stigma experienced by both caregivers and the family member living with BD and how this may be associated with outcomes such as quality of life need more research.

Self-stigma, or affiliate stigma, may also be apparent for those who are caregivers or family members of those living with BD. One study has noted that affiliate stigma was higher for those with BD than those with depression, but lower than those with schizophrenia (Chang et al., 2017). More research is needed to understand in detail about the relationship between self-stigma in carers and other features more specifically as this was not assessed in this study.

Limitations and future research

Age featured as important in some studies, with younger age being associated with greater stigma and poorer medication adherence (Hajda et al., 2016). Qualitative research has also noted that younger people reported stigma, with concerns about disclosure and shame being reported (Noack et al., 2016). However, much of the existing literature on BD stigma has overlooked the experience of newly diagnosed people living with BD and their experiences of stigma. More work is needed to understand the relationship between age and self-stigma and to explore how stigma and self-stigma may be reduced for younger people. In addition, medication adherence has not been widely assessed in relation to stigma or self-stigma, and more research is also needed to determine the impact of stigma on treatment seeking.

Intersectionality was not considered in any studies; however, this may be important, given that some participants with BD may experience stigma in a range of areas due to impacts of the illness on their functioning. For example, for someone living with BD, stigma may occur as a result of BD itself or due to underemployment and insufficient housing (Staiger et al., 2018). Medical and psychiatric co-morbidities were also not considered in any study, and this may also be an area where greater intersectional stigma and self-stigma may occur.

Another area lacking in the research was an examination of media portrayals of BD. Although some have noted that BD seems to have been presented more positively over time (Ellison et al., 2013), little research has confirmed this. In addition, little research has been conducted that has assessed social media activity in relation to BD, and there is little known about how social media may increase or decrease stigma for people living with BD.

Considerable research attention has been paid towards stigma, in particular self-stigma over the past 10 years. Although this review has noted some areas, there may be gaps or studies that have not been identified in this review. A limitation in the searches for this review was noted where some studies reported on stigma outcomes in BP, along with reporting other serious mental illness outcomes, meaning that it was difficult to determine bipolar-specific stigma experiences. Although these studies have been excluded from this review, greater attention is required to understand specific stigma experiences of different diagnostic groups.

Conclusion

Understanding stigma is important in BD, with this having a significant association with functioning. More targeted research is needed to understand stigma types, the relationship between these and other outcome variables, particularly using longitudinal designs. More research is needed to determine whether those who may be at risk of higher levels of stigma may benefit from targeted psychological interventions; attention is needed to explore the experiences of self-stigma for those in the younger age group, given the relationship between younger age, poor medication adherence and greater self-stigma.