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Identity in Communities and Networks

Identity Formation within Online Mental Health Communities

Abstract

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.

References

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11 replies on “Identity Formation within Online Mental Health Communities”

Hi Kiralee,

Your paper delves into a different side of social media than I have been exposed to previously, and offers engaging insights into this impact on mental health.

I was particularly intrigued by your exploration of how people need to validate their mental illness to be perceived as authentic by certain communities. I was also interested in the discussion of communities creating normalised behaviours centred around a mental illness, and even celebrating these behaviours; specifically in the case of eating disorders.

Do you think users part of these communities can reach a point where their identity becomes their mental illness, and this is why their recovery is inhibited? Further to this, there is a positive side you noted where it can help recovery. Do you think these communities should be banned online due to such mixed outcomes for those suffering with mental illness?

Very interested to hear your feedback. Thank you again for leaving a comment on my paper as well, it created an interesting discussion.

Hi Mia, thanks for reading my paper and sharing your thoughts!
Based on my research and experience of viewing users engage in mental health communities online, I personally believe that when users place a mental illness at the core of their identity and fixate on the performance of a mental illness, their recovery can be inhibited. Unfortunately, there is insufficient research to conclude this from an academic perspective at this time. I think that banning mental health communities altogether would prevent a lot of people from seeking help for their illnesses. It could certainly be helpful to ban the communities that romanticise eating disorders or self harm though. I think that it would be really helpful to have more health professionals and mental health experts within these communities to help suggest ways that users could receive the help that they need. This could hopefully reduce the amount of performing and conforming to the norms of a particular illness that takes place for a member to be accepted by the community.
Kiralee.

Thank you Kiralee for responding to my questions.

It truly appears like a difficult issue to tackle, especially since these communities can help some whilst hindering others in their mental health journey!

Do you think if there were specific communities potentially created by professionals it would make them more approachable by people with mental illness needing help? Or are the reasons behind the popularity of these communities the fact that they are created by people with a specific mental illness?

Thank you Mia for your comments- I’ve really enjoyed our discussions on my paper and yours.

It is difficult to predict how effective a community moderated by professionals would be. I think there’s a chance that some users might feel less comfortable performing in front of experts in the mental health field because their opinions would be even more valuable than the opinions of fellow users in the community. Based on the studies I have read, it seems like there are a lot of mental health benefits to building peer support networks and it would be interesting to know whether these trends would continue if the communities were moderated by professionals.

Thank you Kiralee for answering all my questions!

I have very much enjoyed our discussions over both our papers, they have been insightful and provided a platform to discuss topics we are both passionate about.

Hey Kiralee,

I really enjoyed reading your paper, it was very well written! I particularly liked your point of individuals with mental illnesses feeling a sense of belonging to communities, and how users can construct a new identity by maintaining anonymity in these groups to avoid the stigma associated with a particular mental illness.
It is also so shocking to read about communities like ‘pro-ana’ that present such a negative connotation compared to the majority of supportive mental illness communities.
I am interested if you agree whether individuals’ validity and acceptance into these communities, as well as the varying views and behaviours conveyed that become normalised are causing more harm than good?

Hi Ruby, thanks for reading my paper!
In my opinion, there are a lot of very problematic behaviours in these communities- especially the ones that promote eating disorders or self-harm as inspirational or as a lifestyle. Whether ALL mental health communities do more harm than good is debatable, however I could definitely see the value in having more medical professionals and mental health experts engaging in these communities to create more positive outcomes its members.

Hi Kiralee,
I really enjoyed reading your paper. I think that you explored an interesting topic because we rarely hear about sharing of online mental illness identities. The fact that communities are actually giving the users the opportunity to express themselves forming multifaceted identities via support groups is fascinating.
Also it is the first time that i heard about the context collapse. Very interesting one. Personally, your piece of work was a really informative one. Good job.

We did not choose the same stream but it would be nice if you could have a look at my paper. Thanks in advance. Here is the link: https://networkconference.netstudies.org/2020Curtin/2020/05/12/online-social-networks-reinforcing-cultural-identities-of-indigenous-people-in-australia/

Hi Rhoma,
Thanks for taking the time to read my paper. I’m glad you found it interesting. I will try to read your paper soon- I read the abstract and I’m looking forward to learning more about indigenous cultural identities.
If you’re interested in the topic of anonymity and context collapse, I would recommend Ruby Simkin’s paper on The Relationship between Online Anonymity and Self-Disclosure of Users on Social Platforms. It’s an interesting read if you have the time.
Kiralee.

Hey Kiralee,
I enjoyed reading your paper and mental health is so important and the relationship with online identity is incredibly interesting. I enjoyed your discussion about context collapse and how to reduce this a common practice is to create “throwaway” accounts on platforms like Reddit. I completely agree that their use of anonymity and pseudonymity allows them to explore/discover/perform their identity to the audience and may subconsciously alter a different persona with a specific audience in mind.

Recently I have seen accounts on TikTok where people suffering from depression, anxiety or eating disorders create accounts to share their story, experience and recovery. This is to hold themselves accountable but also provides them a platform to support others suffering the same disorder but also to educate people in the realities and dangers/seriousness of mental illness. Along with this, people working in health professions such therapists, nurses and doctors working with these patients also provide support, daily advice and education – with an increase of this content during COVID-19 with isolation having potential negative effects.

How do you view these accounts in terms of online identity performance? Do you think that despite the obvious goal of inclusivity, belonging and support system that these accounts could trigger some users and does a platform like TikTok have the obligation to pre-warn users of ‘sensitive’ content before allowing viewers to watch?

I also explored performance of identity using Goffman in relation to Instagram and how the affordances of Web 2.0 has enabled different ways for self expression of identity. I would appreciate it if you checked it out and let me know your thoughts! https://networkconference.netstudies.org/2020Curtin/2020/05/11/communication-and-collaboration-through-web-2-0-affordances-on-virtual-online-communities-for-expression-of-identity-performance-of-identity-on-instagram/

Thanks,
Amy

Hi Amy,
Thanks for reading my paper- I’m very glad you found it interesting and relevant in light of the COVID-19 content that is currently circulating the Internet.
Personally, I think it’s wonderful to see that people working in health professions are getting involved in these communities. There are also definitely benefits for users who participate in peer-support communities, particularly in this time when many people are feeling the effects of social isolation.

I would say that some of these accounts do have the potential to trigger some users. Especially those who have disorders that are very defined by the actions and behaviours of an individual, such as eating disorders and self-harm. Given the current yearning many people currently have for belonging and inclusion it is concerning to think that some users may feel more pressure now more than ever to present themselves online as an authentic sufferer of a mental illness.
I think that TikTok should take more responsibility and warn users about potentially triggering content, however this may not be an effective way of preventing users from accessing content that could cause them harm. I believe that TikTok should promote content produced by medical professionals and also provide links to credible resources and websites that provide professional advice and support for people who struggle with their mental health.
Kiralee.

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