This paper seeks to analyse the activities and behaviours that users engage in to construct identities within online mental health communities. I argue that these communities encourage users to identify with their mental illnesses, with the potential to improve or worsen their mental wellbeing. The paper begins by discussing mental health diagnoses as a tool used to define and confirm identity in online mental health communities. Following this is an analysis of the potential for anonymity and pseudonumity to help users cope with the stigma of mental illness and the context collapse that results from performing identity online. Then, ongoing performances of the self within these communities are discussed, followed by a look into the way that collective identities form within online communities that function as support groups.
The structures and cultures of online mental health communities encourage their members to construct and perform identities consistent with the mental illness around which the community forms. This results in the sharing of mental illness identities, which can serve either to the benefit or to the detriment of each individual’s mental wellbeing. Erving Goffman (2008, p.128) defined the postmodern approach to identity, in his theory of social performativity. This theory states individuals do not possess a singular, true identity and that people perform their identities with particular audiences in mind (Goffman, 2008, p.128; van der Nagel & Frith, 2015). Many of these performances and identity-forming activities within mental health communities take place on the Internet, which allows users to express themselves and to form fluid, multifaceted identities (Kirmayer, Raikhel & Rahimi, 2013, p.167; Goldfarb & Armenta, 2016, p.165). The performance of mental illness identities is evident through various activities that users in this community engage in, such as proclaiming a diagnosis status, performing anonymously or under a pseudonym, forming collective identities within support groups, and ongoing performances of the self.
Within mental health communities, many users feel the need to prove that they identify with and belong to the community by sharing their diagnosis status with other users (Giles & Newbold, 2011, p.420). Since these communities are formed around particular shared mental illnesses, users who have received an official diagnosis from a medical professional are perceived to be more authentic and to have a greater right to identify with the wider community than those who have not (Giles & Newbold, 2011, p.420). The status of being diagnosed is often the variable that determines whether a user is part of the “ingroup” or “outgroup” (Giles & Newbold, 2011, p.420). For instance, Giles and Newbold (2011, p.420) discussed the online autistic community, where there was a binary distinction between some members who were diagnosed as being on the autistic spectrum and thus, validated members of the community, whereas others were neurotypical and thus were not included in the primary peer support group. Giles and Newbold (2011, p.420) have asserted that the proclamation of one’s diagnosis holds particular status in communities such as the “pro-ana”community, which is comprised of individuals suffering from anorexia nervosa who do not view their condition as an illness requiring treatment through modern medicine, but rather, as a lifestyle (Giles & Newbold, 2011, p.419). However, it is also the actions of individual users which determine whether or not they will be accepted by other community members (Giles & Newbold, 2011, p.420). In this way, users who are new to the “pro-ana” community must also perform their diagnosis, serving as an “initiation process” of sorts to validate their identity as an authentic anorexic (Giles & Newbold, 2011, p.420; Hodkinson, 2017, p.274).Some individuals who have participated in online mental health communities due to a suspected mental illness, will announce their official diagnosis in a celebratory manner because they perceive it as a confirmation of their belonging to the group (Giles & Newbold, 2011, p.421).
In many online mental health communities, there is a focus on community definition (Goldfarb & Armenta, 2016, p.172). Goldfarb and Armenta (2016, p.172) have noted that users who are affected by a stigmatized condition often desire verification that other users share their experiences. This is exemplified in the community of veterans who use the POS REP application, which connects veterans to support those who suffer from PTSD (Goldfarb & Armenta, 2016, p.170). The members insisted that the app developers had mechanisms in place to confirm that everyone in the community was indeed a veteran, displaying a focus on community definition and shared experiences that is commonplace in many online mental health communities (Goldfarb & Armenta, 2016, p.172). Each online mental health community that is formed around a single condition has different behaviours and characteristics that define the condition (Giles & Newbold, 2013, p.477). In this way, Giles and Newbold (2013, p.487) propose that each community has “a set of category predicates around what might be considered ‘normal’ within a community that enables members to validate their credentials for community membership”. Those who successfully integrate into an online mental health community often experience improved self-esteem and confidence in who they are, which facilitates recovery and improves their general wellbeing (Naslund et al., 2016, p.115). However, those who do not conform to the characteristics and traits of the community may be shunned or dismissed as not deserving to identify as a genuine sufferer of the condition and therefore not belonging to the community (Giles & Newbold, 2011, p.420). Due to the fact that the diagnosis criteria for mental illnesses are constantly being redefined, Giles and Newbold (2011, p.421) have raised concerns that people who base their personal identities around a particular mental illness may struggle psychologically if the criteria for their diagnosis changes. The Diagnostic and Statistical Manual developed by the American Psychiatric Association outlines behavioural criteria for the diagnosis of various mental illnesses, which significantly influences what is considered normal in these communities (Giles & Newbold, 2011, p.421). When this document redefined Asperger’s syndrome as part of the autistic spectrum, there were users online who felt a loss of identity (Giles, 2014, p.187). Despite the common practice of for users to disclose their diagnoses, not all users are willing to reveal it publicly and prefer to use pseudonymity or anonymity to explore their identities without the threat of experiencing stigma and context collapse (Lawlor & Kirakowski, 2014, p.153).
Anonymity and pseudonymity enable users to engage with others in online mental health communities to experiment with their identities without the threats of context collapse or experiencing stigma (van der Nagel & Frith, 2015, para.1). Context collapse occurs when users are forced to perform particular identities in front of their whole social network, rather than the smaller, distinct groups typical in offline interactions (Hodkinson, 2017, p.277). As a result, some users are concerned that the audience to whom they intend to communicate will not be the same as the audience that views their communication (Hodkinson, 2017, p.277). Likewise, some individuals with mental health conditions may experience the threat of self-stigma, whereby they associate mental illness with negative stereotypes and therefore avoid publicly identifying with them (Lawlor & Kirakowski, 2014, p.153). To cope, some of these individuals decide to access online mental health communities under a pseudonym or anonymously (Lawlor & Kirakowski, 2014, p.153). Research by Farrer et al. (2008, p.6) concluded that older Australian citizens, especially those over 70 years’ old, had lower mental health literacy and more stigmatised views of mental illness than younger people. One possible cause for such findings is theorized to be because people in this population are less likely to access mental-health related media, such as online peer support communities (Farrar et al., 2008, p.6). A few social networking sites, such as Reddit, allow users to browse communities anonymously online, granting them the ability to avoid personal association with the stigma that is experienced by people suffering from mental illnesses (Kirmayer, Raikhel & Rahimi, 2013, p.180). Anonymity creates an environment whereby users can express themselves freely without the threat of negative consequences that could impact their offline lives (Naslund et al., 2016, p.116; Lawlor & Kirakowski, 2014, p.154). One of these negative consequences is the threat of context collapse, which can be alleviated through performing anonymously or under a pseudonym by allowing users to construct identities completely separate from their real name identities (van der Nagel & Frith, 2015, para.1).
One strategy for reducing the risk of context collapse while a user is exploring their identity is by creating an anonymous account on social networking sites (van der Nagel & Frith, 2015, para.1). On Reddit, it is a common practice for people to create “throwaway” accounts, which are created by a user for single use in only one particular community (Pavalanathan & De Choudhury, 2015, p.316). These accounts do not require users to register with an e-mail account, personal information, or to disclose any other Reddit accounts owned by the user (Pavalanathan & De Choudhury, 2015, p.316). Pavalanthan and De Choudhury (2015, p.320) observed in their study that the number of Redditors using throwaway accounts within mental health communities was nearly six times larger than the number of Redditors using throwaway accounts in other communities. This is due to the fact that mental health communities tend to share personal and sensitive content with one another (Balani & De Choudhury, 2015, p.1377). Van der Nagel and Frith (2015, para.42) posit the notion that anonymity and pseudonymity allow users to explore identities- such as identifying with a mental illness- because they can perform online without those in their social network knowing about it. When a user engages with others in these online communities, whether anonymously, under a pseudonym, or under their given names, they tend to develop and perform personas which are usually constructed with a particular audience in mind (Turkle, 1997, p.72; Hodkinson, 2017, p.277).
Since social networking sites allow users to construct performances and personas online, users within online mental health communities tend to form identities based on their mental illnesses (Naslund et al., 2016, p.115;). Hodkinson (2017, p.274) asserts that Erving Goffman’s concept of social performativity can be observed within online communities in the way that users perform their identities in digital spaces. Giles and Newbold (2013, p.477) consider online mental health communities to be “communities of practice” due to the way that the behaviours of each individual determine whether or not they are welcomed as those who belong to a given group. One particularly problematic example of this concept is occurs in online communities where members share suicidal tendencies and feel the need to “[construct] suicidal identities” (Horne & Wiggins, 2009, p.171). Within these communities, users are identified as either individuals who are merely claiming to be suicidal to receive attention or individuals who have genuinely attempted to end their lives (Horne & Wiggins, 2009, p.170). Members of mental health communities often label themselves and perform identities that are similar to those of fellow users (Giles & Newbold, 2011, p.420). Horne and Wiggins (2009, p.171) noted the stories told within the suicidal community were very similar especially those that recalled how someone began to be affected by depression and how they felt desperate while seeking help. By engaging in these activities, a user is performing the suicidal identity in front of the community in order to have their status as genuinely suicidal approved by others (Horne & Wiggins, 2009, p.171). If their identity is not accepted by the community, an individual may be discredited and pressured into leaving the community (Horne & Wiggins, 2009, p.182). Therefore, Horne and Wiggins (2009, p.182) suggest that the primary function of these particular mental health communities may not be to find advice and support, but to find other users who affirm their right to identify with a particular condition or behaviour. Individuals who internalise and identify with their mental illnesses are likely to maintain high-intensity symptoms and behaviours that conform to the normalised perceptions of these conditions (Yanos et al., 2010, p.88).The interactions between constructed personas in online mental health communities often form collective identities (Giles and Newbold, 2011, p.420; Koski, 2014, p.76).
Users are encouraged to identify with their mental illnesses within online support groups because collective identities are formed due to the shared behaviours and experiences of its members (Giles & Newbold, 2011, p.420). Pearson (2009, para.24) asserts that a person’s identity does not form in isolation, rather, “each individual identity develops as part of its own node within a network”. Users in online mental health communities tend to compare their experiences to those of other community members and providing mutual support for one another (Giles & Newbold, 2011, p.426). For example, communities that consist of individuals who live with an eating disorder, such as pro-anorexic or pro-bulimic communities, have the potential to inhibit an individual’s recovery from their eating disorder, due to the tendency for these communities to encourage or celebrate damaging habits (Kirmayer, Raikhel & Rahimi, 2013, p.176). It is common for users to post images in these communities labelled as “thinspiration”, which inspires users to continue to persist in behaviours that help them lose weight, often to a harmful degree (Giles & Newbold, 2011, p.419). Koski (2014, p.76) refers to these identities as examples of “collective illness identity”, whereby performing an illness or disability publicly as a member of a collective identity can supersede an individual’s personal identity. The formation of such an identity can result in many negative outcomes, such as lowered self-esteem, and increasing an individual’s risk of unhealthy eating behaviours (Kirmayer, Raikhel & Rahimi, 2013, p.176). However, collective identities and support groups have also been shown to benefit participants, by making individuals surer of themselves and helping them to better understand the conditions with which they live (Naslund et al., 2016, p.115; Kirmayer, Raikhel & Rahimi, 2013, p.176). It has also been observed to increase the likelihood of these individuals seeking professional medical care and can connect individuals who possess rare mental health conditions, such as body integrity disorder. (Naslund et al., 2016, p.117; Kirmayer, Raikhel and Rahimi, 2013, p.175). It is important to acknowledge the existence of lurkers, which are users who read content but rarely create their own (Lawlor & Kirakowski, 2014, p.154). It can be argued that these users do not identify with their mental illness, due to their lack of engagement in identity-forming activities and an observable lower sense of belonging compared to their more active counterparts within these communities (Lawlor & Kirakowski, 2014, p.154). However, other research claims that on average, lurkers accessed the community for longer than many active users and were more likely to seek professional help, suggesting that users do not necessarily have to be actively engaging in a community to identify with their mental illness (Lawlor & Kirakowski, 2014, p.158).
Online mental health communities encourage its members to construct individual identities around the mental illness that the group shares. They use diagnosis as a means of confirming a member’s authenticity and right to identify as a member of the group. Pseudonymity and anonymity allow users to construct identities separate from their real name identities to avoid stigma and to perform without the risk of context collapse. Users engage in performances within these communities in order to validate their identities and be assured that their behaviours are normal. Peer support networks surrounding a mental illness tend to create collective identities, despite some users’ lack of engagement. There were a few ideas this paper was not able to explore in depth due to gaps in the research currently available. Two areas I would suggest for further research are the consequences of an individual being shunned from an online mental health community and the ways in which identifying with a mental illness can cause people to exaggerate normalised characteristics within online communities.
Balani, S., and De Choudhury, M. (2015). Detecting and characterizing mental health related self-disclosure in social media. Work-in-Progress, 1373-1378. DOI: 10.1145/2702613.2732733
Farrar, L., Leach, L., Griffiths, K. M., Christensen, H., and Jorm, A. F. (2008). Age differences in mental health literacy. BMC Public Health 8(125). DOI: 10.1186/1471-2458-8-125
Goffman, E. (2008). The presentation of self in everyday life. In D. M., Newman and J. O’Brien (Eds.) Sociology: Exploring the Architecture of Everyday Life Readings. (pp.120-129). Pine Forge Press. https://books.google.com.au/books?id=TlIAzT5uT-IC&lpg=PA120&ots=ItLdiiNsqc&dq=erving%20goffman%20the%20presentation%20of%20the%20self&lr&pg=PA120#v=onepage&q&f=false
Goldfarb, B., and Armenta, J. E. (2016). Articulating vulnerability and interdependence in networked social space. In K. Ellis and M. Kent (Eds.), Disability and Social Media: Global Perspectives (pp. 161-175). Routledge. http://ebookcentral.proquest.com/lib/curtin/reader.action?docID=4741913&ppg=184
Giles, D. (2014). ‘DSM-V is taking away our identity’: The reaction of the online community to the proposed changes in the diagnosis of Asperger’s Disorder. Health, 18(2), 179-195. DOI: 10.1177/1363459313488006
Giles, D. C., and Newbold, J. (2011). Self- and other-diagnosis in user-led mental health online communities. Qualitative Health Research, 21(3), 419–428. DOI: 10.1177/1049732310381388
Giles, D. C., and Newbold, J. (2013). ‘Is this normal?’ The role of category predicates in constructing mental illness online. Journal of Computer-Mediated Communication, 18(4), 476-490. DOI: 10.1111/jcc4.12022
Hodkinson, P. (2017). Bedrooms and beyond: Youth, identity and privacy on social network sites. New Media & Society, 19(2), 272–288. DOI: 10.1177/1461444815605454
Horne, J., and Wiggins, S. (2009). Doing being ‘on the edge’: Maintaining the dilemma of being authentically suicidal in an online forum. Sociology of Health and Illness, 31(2), 170-184. DOI: 10.1111/j.1467-9566.2008.01130.x
Kirmayer, L. J., Raikhel, E., and Rahimi, S. (2013). Cultures of the Internet: Identity, community and mental health. Transcultural Psychiatry, 50(2), 165-191. DOI: 10.1177/1363461513490626
Koski, J. P. (2014). ‘I’m Just a Walking Eating Disorder’: The mobilisation and construction of a collective illness identity in eating disorder support groups. Sociology of Health & Illness, 36(1), 75-90. DOI: 10.1111/1467-9566.12044
Lawlor, A., and Kirakowski, J. (2014). Online support groups for mental health: A space for challenging self-stigma or a means of social avoidance? Computers in Human Behavior, 32, 152-161. DOI: 10.1016/j.chb.2013.11.015
Naslund, J. A., Aschbrenner, K. A., Marsch, L. A., and Bartels, S. J. (2016). The future of mental health care: Peer-to-peer support and social media. Epidemiology and Psychiatric Sciences, 25, 113-122. DOI: 10.1017/S2045796015001067
Pavalanathan, U., and De Choudhury, M. (2015, May). Identity Management and Mental Health Discourse in Social Media [Paper Presentation]. WWW ’15 Companion: Proceedings of the 24th International Conference on World Wide Web. DOI: 10.1145/2740908.2743049
Pearson, E. (2009). All the World Wide Web’s a stage: The performance of identity in online social networks. First Monday, 14(3). https://firstmonday.org/article/view/2162/2127
Turkle, S. (1997). Multiple subjectivity and virtual community at the end of the Freudian Century. Sociological Inquiry, 67(1), 72-84. DOI: 10.1111/j.1475-682X.1997.tb00430.x
van der Nagel, E., and Frith, J. (2015). Anonymity, pseudonymity, and the agency of online identity: Examining the social practices of r/Gonewild. First Monday, 20(3). https://firstmonday.org/article/view/5615/4346
Yanos, P. T., Roe, D., and Lysaker, P. H. (2010). The Impact of Illness Identity on Recovery from Severe Mental Illness, American Journal of Psychiatric Rehabilitation, 13(2), 73-93, DOI: 10.1080/15487761003756860