The meaning of stigma and its impact on my life
In the following section I discuss my reflection and contextualise the experiences in the wider literature which seeks to explore the impact of mental health stigma in society. It is important to illuminate how stereotypes and prejudice impact on people with lived experience, and lead to their sense of shame and exclusion from society. Figure 1 highlights different types of stigma encountered in my life which resulted in my low self-esteem, poor self-efficacy and which limited my recovery. It provides a framework to explore discussion in this article. The elements of stigma represented in Figure 1 include: Public stigma, structural stigma, associative stigma, personal stigma, perceived stigma, and self-stigma. Alongside the cycle of stigma, my own experiences of double discrimination as both a woman and a person with lived experience of mental ill-health are depicted; these underpin the experiences of social bullying. Whilst parallel to these feelings, but outside of my direct encounters, the associative and affiliate stigma experienced by my family are identified. Finally factors that help to challenge stigma in society, such as protest, education, and contact push out against the cycle of stigma to counteract discrimination and marginalisation. These factors, captured in Figure 1, are elucidated in the article discussion.
Figure 1 Experiencing and challenging different forms of stigma.
The social identity of a person with mental ill-health is often negatively construed because the individual does not conform to social expectations of working and living independently; this thus leads to them being stigmatised and devalued and experiencing public stigma. Furthermore, as people absorb this negatively constructed social identity, this then leads to forms of internalised stigma, or self-stigma, in the individual because of negative attitudes aimed at them.
The stigma encountered by people with mental health issues has been widely explored in research[1,2,5]; perhaps the most well-known forms of stigma are public and self-stigma. However, stigma exists in many forms across cultures: Within the individual (self-stigma), interpersonally (personal stigma), in the shared beliefs of a social group (public stigma), and in the policies and practices that structure society (structural stigma). Figure 1 shows the elements of stigma which constrained my recovery, first exemplified in structural stigma derived from public stigma.
Structural stigma is an important concept to highlight as it expresses how stigma can exist throughout a culture and become endemic in a system. From my narrative, it seems clear that my peers believed that it was acceptable for them to tease me because I was a person with mental ill-health to be pitied and undermined. The acceptance of structural stigma allowed them to bully me because I was a person who was devalued and of no worth.
Furthermore, three different reactions by the community to people with mental health issues have been identified. Firstly, authoritarianism is the belief that people with mental health issues are not able to take care of themselves and need other people to take control and direct their lives. Secondly, there is a response to people with mental ill-health that is based on fear and exclusion. This reaction is founded on the belief that people with mental health problems are dangerous and should be isolated from their communities. The final reaction generated in response to people with mental ill-health is benevolence. This response is based on the belief that people with mental health issues are innocent and naïve and not able to make decisions for themselves, resulting in paternalistic help being offered. Such a reaction from peers in their community is often compounded with feelings of annoyance and anger towards people with mental health issues.
Thus, in my experiences I was a person to be excluded and isolated; my peers also felt a benevolent response towards me. I was treated with paternalism as they directed annoyance and anger towards me. I was to be pitied but simultaneously an object unable to manage her own emotions, unable to live independently, of potential risk because I failed to respond in “normal” and socially acceptable ways to my peer group. The process of structural stigma led to a sense of low self-esteem and poor self-efficacy, as illustrated in Figure 1.
Furthermore, six further forms of public stigma have been highlighted; however only three are mentioned here which I particularly relate to in the context of this article. I thought I was unable to fulfil social positions (exclusionary sentiments); I believed my mental health treatment had negative effects on my social status; (treatment carryover concerns) and I believed my family experienced negative consequences from my mental health status (disclosure spillover).
Associative and courtesy stigma[11,12] were encountered by my family members This type of stigma is a process in which a person is stigmatized by virtue of his/her association with another stigmatized individual. Additionally affiliate stigma occurs when care-givers’ psychological responses to caring are impacted by the public stigma that prevails in society and they internalise self-stigma. My parents supported me to the best of their ability, but they didn’t always understand the shame and stigma that I experienced. My family felt personally impacted by the negativity of my diagnosis; and were unable to talk to their peers in their community, encountering affiliate stigma. As shown in Figure 1, their experiences were encountered in parallel to my exclusion but were different to and outside of the stigma I suffered as a person with a diagnosis of schizophrenia. They sought support from peer and mutual aid support groups at moments in their caring journey. However, I felt uncomfortable with them attending such groups because I believed they talked solely about my mental ill-health in these environments. I didn’t recognise or acknowledge that they had their own needs as care-givers. However, eventually, the fears I expressed prevented them from accessing any forms of support. My parents were therefore further isolated through the feelings of self-stigma; and, thus, stigma limited the recovery of both me and my social network.
These elements suggest that underpinning public stigma are elements of fear, a desire to keep a social distance, a devaluing of the role of people with mental health issues; fears that association with someone with a mental health issue can cause feelings of exclusion or “courtesy stigma” and associative stigma[11,12]. These elements connect to the process of self-stigma in both myself and my parents[1,11] associated with internalising the notions of social exclusion and the inability to manage an independent life. These elements of exclusion led to the belief that I was deserving of pity, that I was shameful and thus deserving of stigma.
The issue of perceived stigma may also be in play in this context[15,16]. Perceived stigma concerns how a person with mental ill-health anticipates a negative reaction from others about their diagnosis; it is particularly relevant to those people who want to be open about their diagnosis. Moreover, this interacts with a sense of self-stigma as indicated in Figure 1. I anticipate a negative reaction from some people in my social circles and thus choose not to disclose my diagnosis. For example, I have not shared my diagnosis with some close family members from a fear about how they might react-I perceive that the diagnosis of schizophrenia is often linked to notions of dangerousness and anticipate a negative response. However, although I choose not to reveal my diagnosis in many social settings, I often divulge these experiences in many academic circles. I have a passion to use my expertise-by-experience to change mental health services for the better and yet feel a need to protect myself from people who don’t understand mental ill-health. This decision about when to reveal my diagnosis leads to an anomaly of when I choose to disclose my status and when I choose not to.
Returning to my experiences of exclusion, women with mental health conditions often experience social devaluation through a double disadvantage based on the intersection of being both a woman and a person with a mental health condition. Such discrimination was reflected in the historical devaluing of women through the early diagnosis of hysteria, labelled as a mental health condition linked to women’s health and reproductive cycles. Women with mental illness, who have experienced trauma, highlighted more difficulties with low self-esteem and the stigma connected to lived experiences than women who have not experienced trauma. The trauma and social bullying that I received ripped out my sense of self-esteem and self-efficacy, limiting my recovery and leaving me a pitiable and empty shell. This process of stigma is depicted in Figure 1, whilst the double discrimination of being a woman and having lived experience of mental ill-health is illustrated as existing alongside these feelings.
Furthermore, the connection between perceived stigma and experiences of victimisation for people with mental health needs has been considered in other studies. Perceived stigma and victimization are significantly associated, and the stigma attached to mental illness, from being perceived as being dangerous, violent, or undesirable, is a statistically significant predictor of victimization experiences. However, there is little understanding of the experiences of those with mental health issues; particularly as women with mental ill-health often experience an intersection of stigma and victimisation by their peer and friendship groups[18,19], as I describe above.
More widely, the cultural heritage of people with mental ill-health can impact negatively on their experiences of acceptance in their peer and friendship groups[10,20]. Public from Eastern countries ascribed more moral attributions to people with mental illness than from Western cultures, thus increasing the potential to discriminate. Moreover, people from Western countries endorsed higher stigma (prejudice and discriminatory potential) and made more moral attributions when the target was a minority (as compared with majority) group member. Furthermore, concern for loss of face in Eastern cultures is part of the process preventing individuals from seeking help from mental health providers to prevent shaming one’s family, because mental health conditions are highly stigmatized in Chinese communities. In the United Kingdom, there has been an ongoing national anti-stigma campaign, Time to change, which has sought to challenge stigmatisation and discrimination against people who experience mental ill-health; it has achieved some limited success.
This section has underlined the stigma and discrimination experienced by people with mental ill-health, highlighting the potential of victimisation to this group, and particularly to women who experience double discrimination. Figure 1 captures how I have experienced different types of stigma which have limited and bounded my potential recovery journey, and that of my family. Subsequently, an acknowledgement of the importance of cultural heritage in this context has also been considered. In the next section the paper considers how society can challenge the stigma and marginalisation of those who experience mental ill-health.