Foregrounding illness or wellness? Nuancing peer-led health publics on social media

Abstract <br/>Chronic conditions are often described as long-term bodily disorders that lead to functional limitations and the need for ongoing medical care. This steers some towards peer-led online communities (PLOCs) on social media for peer-support. However, even though people living with chronic conditions can be situated as somewhat ’counter’ to the dominant public, the way these PLOCs are organized, shaped and used vary. Shifting perspectives on illness and wellness affect how PLOCs are shaped and used. This article offers a nuanced investigation of the underexplored type of online illness communication that takes place on social media in PLOCs by asking 1) what characterizes the PLOCs in terms of sharing and communication flows, and what role does illness/wellness play in this regard?; 2) how do platformed affordances support the sharing of illness/wellness narratives in these PLOCs? The article draws from empirical material from two different types of Danish PLOCs for patients with chronic conditions and consists of an online survey, a manual counting and coding of ‘posts’ in the two PLOCs and individual interviews with 20 members/followers. The article finds that age, shifting perspectives on illness and wellness, and platformed affordances seem to have a significant influence on these variations in communication flows. Thus, this article contributes to existing research on digital health and peer-led health publics with a more nuanced approach to PLOCs and to how the shifting perspectives of living with chronic conditions are mirrored in closed and open public spheres on social media. <br/>Introduction<br/>The digital has become a significant part of the field of health and the internet has become an important health resource for many different patient groups (Castleton et al., 2011; Eysenbach, 2008). Social media is also an inherent part of health and of the public sphere. Web 2.0 technologies have changed the way individuals manage their healthcare, and like several other illness practices, experiencing and living with chronic conditions has been undergoing a process of direct mediatization (Hjarvard, 2017) meaning that as a supplement to talking to nearest family, the doctor and other health care professionals, these practices of support and care have also moved online in support groups and various social network sites and profiles (Lupton, 2014). According to Danish citizens, 1.5 million of them are experiencing one or several chronic conditions. Looking at data for Danish people registered with one or more chronic diagnoses, the number is approximately 3 million (The National Danish Health Profile, 2021). Chronic conditions are often described as long-term bodily disorders that lead to functional limitations and the need for ongoing medical care (Hvidbjerg et al., 2020). Chronic conditions or illnesses can take many forms and vary in duration and seriousness; however, the consequences for the people who are affected have certain similarities. The long duration can mean incoherent treatment processes lacking coordination and continuity (Hvidbjerg et al., 2020). People may lose attachment to their working life for a period or permanently, and participating alongside the well citizens in society becomes difficult. These consequences steer some towards health communities on social media for peer support and to avoid feeling alone and excluded. A multimethod study from 2013 shows how participation in online health communities provides both information utility, patient empowerment and emotional support – in ways that family and friends cannot provide (Johnston et al., 2013). Friends and relatives tend to withdraw from exhaustion from long-term support and it can be difficult and even uncomfortable to share experiences of illness with people who have not experienced being ill themselves (Wright, 2000). Even though people living with chronic conditions are placed in a somewhat counter position to the well public, research finds that we need to look at the variations and the different perspectives on illness that occur among citizens with chronic conditions instead of presuming they are a group of shared identities. A metastudy of 292 qualitative research reports pertaining to chronic physical illness argues that the previous and somewhat traditional view of living with chronic illness as a ‘predictable trajectory’ is incomplete and instead the study provides the Shifting Perspectives Model of Chronic Illness (Paterson, 2004). The model suggests that living with chronic illness is not predictable in the sense that it is a phased process following a certain trajectory; instead it is a process of shifting between putting illness or wellness in the foreground. It is a matter of perspective and it can be affected by a number of circumstances caused by the ill body, the surroundings such as climate, (lack of) family and close relations and of course encounters with the health care system. Time also seems to be a major factor affecting the perspective of living with chronic illness. It matters where in the process of being ill or being diagnosed the chronically ill finds herself. Is she recently diagnosed? Has the illness always been part of her life? Is she facing other major ‘becomings’ or challenges in life that might affect the illness? In other words: it is also a matter of life circumstances and acceptances as well as variations in personal illness narratives. Thus, we might need to look into living with chronic conditions from a broader angle and when studying PLOCs, the affordances of the social media platforms need to be considered, as they intervene in and affect the communication flows and the narratives shared by controlling and providing either closed or open settings.<br/>This article offers a nuanced investigation of the underexplored type of online illness communication that takes place on social media in PLOCs by exploring how they do not necessarily share the same perspectives on illness and wellness even though they share the identity of being chronically ill as well as how the digital platforms afford different opportunities for engagement and sharing of illness and wellness narratives. To do this, the article focuses on the following two research questions:<br/><br/>RQ 1) What characterizes the PLOCs in terms of sharing and communication flows, and what role does illness/wellness play in this regard?<br/>RQ 2) How do platformed affordances support the sharing of illness/wellness narratives in these PLOCs?<br/><br/>The two PLOCs in question are the peer-led public Instagram account Kroniske Influencers (Eng.: Chronic Influencers (CI)) with 10,000 followers, and the peer-led closed Facebook group Kroniske Smertepatienter (Eng.: Chronic Pain Patients (CPP)) with 3,600 members. <br/>Existing research <br/>A growing interest in the potential of social media, digital health and patient communities has emerged over the years (Lupton, 2014; McCosker, 2018; Tucker &amp; Goodings, 2017). This interest is seen in terms of providing and accessing healthcare information (Eysenbach, 2008), changing health research (O’Connor, 2010), and improving chronic care management (Poisti et al., 2014). Social media have often been perceived as a new and more updated way of reaching young patients in particular. Other areas of research have been more ‘patient centered’ focusing on the potential of social media and online communities for peer support and deisolation. This article takes a somewhat different approach to publics as well as chronic illness, as we offer a nuanced perspective on peer-led health publics by combining the shifting perspectives of illness and wellness, when living with chronic conditions, with platformed affordances. Thus, this article contributes to existent research on peer-led health publics, arguing that there is more to it than just the engagement due to a shared illness.<br/> The various publics are shaped by individual illness narratives, e.g. perspectives on illness and wellness and by platformed affordances. The different affordances and structures allow for different configurations of engagement and possibilities for sharing embodied knowledge and lived experience information regarding specific illnesses, types of medicine and treatment, as well as different forms of care and support. Common for the PLOCs is the way they are deliberately disconnected from the dominant health public understood here as the overall health care system e.g. patient organizations, health care institutions and healthcare personnel. The ‘health publics’ on social media that run a public profile may not urge to communicate or relate to the dominant health public; however, by opening up their communication flows, they somewhat open up for engagement and interference from people and institutions outside of their peer-led community. While the ‘health publics’ that choose to keep their communication behind the ‘closed walls’ of their members-only-community do not wish to engage with the public. They might fear the surveillance of the dominant public, e.g. the health care system and the social system, as well as the judgment or lack of understanding from other relations on social media when contexts collapse (boyd, 2010).<br/>This establishes a rather complex relation between peer-led communities and the system in the intersection of sharing and privacy, knowledge and lived experience of illness and wellness and coping strategies for living with – and despite – chronic illness. These are the relations this article wishes to explore.<br/>The shaping of publics <br/>The notion of ‘publics’ is shaped by various voices and resembles a range of different meanings across disciplines. This article’s ambition is not to outline all of these scopes; thus, a brief introduction to the most dominant voices will follow. Scholars such as Michael Warner (2002) have built on Habermas’ notion of the public sphere, mainly by showi