The Language of Illness and Death on Social Media

An Affective Approach

Carsten Stage, Tina Thode Hougaard

• Publisher: Emerald Publishing Limited
• Year: 2018
• ISBN:
  9781787694811
• Topic: Sciences sociales
• Subtopic: Étude des média

This book investigates the language created and used on social media to express and respond to personal experiences of illness, dying and mourning.
The authors begin by setting out the established and recent research on social and existential media, affect and language, before focusing on Facebook groups dealing with the illness and death of two Danish children. Through these in-depth case studies, they produce insights into different ways of engaging in affective processes related to illness and death on social media, and into both the ritualized and innovative vernacular vocabulary created through these encounters.
Developing an analytical framework for understanding the social role and logics of "affective language" (such as emojis, interjections and other forms of expressive interactive writing), The Language of Illness and Death on Social Media will be of great interest to all those striving to understand the affective importance and roles of language for sharing experiences of illness, death and commemoration in these spheres.

CHAPTER 1

INTRODUCTION

 

 

Social media is now an ordinary, integrated, and natural part of everyday life for many people all over the world. The internet and social media have, in the words of John Durham Peters, become “elemental” (Peters, 2015), which means that we should approach this technology “as a means of existence, in some ways close to water, air, earth, fire, and ether in its basic shaping of environments” (Peters, 2015, p. 49). Yet, because it is so “ordinary” and “elemental,” social media is also becoming increasingly engrained in the extraordinary dimensions of existence and a fundamental part of the changing nature of life, in which unexpected events can suddenly transport us from the ordinary to the extraordinary. This implies that, on social media, we can observe individuals occasionally turned into “existers” when faced with biographical disruptions linked to events such as illness and death (Lagerkvist, 2016). Social media is thus being increasingly used to deal with life’s crises – yet it can also play a role in creating the very same crises. According to Amanda Lagerkvist, social media is “existential media” in a double sense: it can contribute to forming existential crises (e.g., through processes of cyber bullying or digital assaults and conflicts) and help to manage and deal with existential crises (e.g., through various forms of digital communication, such as support groups and online forums) at the same time.

In this book, we take a particular interest in existential and affective publics that arise on Facebook groups that deal with the diagnoses, treatment, and terminal consequences of cancer among children. More specifically, we focus on the language created and used to shape these publics in relation to personal stories of illness, dying, and mourning. “Language” in this book does not refer to the abstract grammar of or system behind digital media (Manovich, 2001) but rather to the actual utterances, signs, and expressions that people use during interaction on social media. Our key objective is thus to develop an analytical framework to understand the role of what we will call “affective language” – for example, emojis and interjections and other forms of expressive interactive writing – in these publics and to understand how this language can be used to explore shared affective processes of digital affect cultures (Döveling, Harju, & Sommer, 2018) on social media groups that concern events that both profoundly disturb but also necessarily become part of everyday life practices for the involved families and followers. In doing this, our analyses draw on both established and recent research on social and existential media, affect, and language with relevance for social media communication about illness and death.

During crises, users of social media (with varying degrees of intention) produce various forms of linguistic signs and expressions, images, and semiotic actions and thus “entextualise” processes of illness and death in new ways (Giaxoglou, 2015a); however, it is becoming somewhat unfashionable to study this type of material due to media and cultural studies’ attempt to avoid framing media as mere channels for content and textual circulation. Through the work of seminal figures such as Innis, McLuhan, Kittler, Carey, and Meyrowitz, we have been taught that media do not simply transport meaning or semiotic content but also fundamentally change and condition social spaces, relations, and hierarchies of knowledge, which implies that we should “take media less as texts to be analysed […] than as the historical constituents of civilization or even of being itself” (Peters, 2015, p. 18). For this reason, language and written texts have become somewhat outdated objects of study due to textual research’s earlier tendency to neglect the cultural changes brought about by the affordances of media. And we agree: it is far too simplistic to understand social media platforms as textual highways. They are complex social, relational, affective, and economic platforms, which condition, mold and impinge their logic on cultural practices and being in a variety of ways (Hepp, 2012; Hjarvard, 2008). However, importantly, they are also habitats for language use – verbal and visual actions. The exchange of writings and images is still a significant part of social media and a key reason for engaging with them as a user – perhaps not only for the semiotic content or meaning of these exchanges (and certainly not only for the joy of reading enclosed products of writing) but also for the exchange of something more affective, relational, or social in character.

A key interest of this book is how research can avoid treating media as mere carriers of meaning – for example, by stressing and understanding their elemental and existential importance – yet actually be able to investigate the language that “takes place” on social media. With this goal in mind, we wish to adopt an explorative approach to social media language that begins with the following questions:

• How can language be approached in ways that foreground the bodily relationality and affectivity of communication and social media?
• What can the use of language teach us about the existential, relational, social, and affective processes taking place in cancer-related publics and commemorative sites on social media?

In asking these questions, this book deals with social media as an important affective platform for communication about processes of illness, death, and mourning. Importantly, the attempt to understand the language and interaction of illness and mourning on social media – less as semiotic meaning and more as contributing to forms of being together, confirming relations, and connecting bodies – finds good backing in a range of both recent and classical theories of language that do not place meaning at the center (e.g., theories that deal with the phatic communion, indexicality, and interjections). In this sense, the book can also be seen as an attempt to connect these rather established understandings of language to a specific field of research on social media, which concentrates specifically on how illness and death are communicated on these platforms. Besides this, the book also indirectly adds to the increasing interest in developing methodologies and analytical strategies for understanding the role of bodily affects in relation to social media communication (Coleman & Ringrose, 2013; Knudsen & Stage, 2015b; Vannini, 2015).

In the remaining part of this introduction, we will outline the book’s methodological and ethical framework. The next three chapters represent the theoretical context and two complementing analytical approaches. Chapter 2 provides an overview of the existing, key theoretical concepts, which we later draw on in our analysis. The third chapter focuses on particular types of affective language in the book’s two case studies (described later), and the fourth chapter offers an analysis of the accumulation and rhythm of this language and what these rhythms of accumulation might teach us about the differences and similarities between the two affective and existential publics being investigated.

1.1. METHOD AND ETHICS

This book focuses on two Danish cases, which are both public and parent-controlled Facebook groups dealing with children cancer: Commemorative site for Lærke Rønde Timm and Fighting for Magnus (MIV). These cases seem to be part of a growing tendency of not only public children’s cancer profiles and groups (The Bradley Lowery Foundation and Caring for Kian are other key examples) but also of a larger group of entrepreneurial cancer blogs and profiles (see Stage, 2017). Of course, we could have selected to study many other types of social media profiles and groups on illness and death (for example, personal or collective blogs or profiles on Facebook, Instagram, Twitter, or other platforms; closed support groups; or intentional or un-intentional RIP pages), but we decided on the two cases mentioned as they are paradigmatic of many similar illness and mourning groups yet also display internal variation (Flyvbjerg, 2010). The groups are similar in having created intense, affective publics, and in having transformed from first focusing on cancer treatment, then on the processes of dying, and finally on creating a forum for commemoration and grief work related to a particular child (Lærke Rønde Timm and Magnus Eid Andersen (nicknamed MIV)).¹ In this sense, these cases can help us understand larger ongoing cultural transformations in the development of new affective publics of sharing illness and grief on social media – and not least shed light on how language is used in these publics – and to some extent challenge our understanding of language merely as a system for semiotic meaning-making. However, the cases are also dissimilar in terms of their scale of dissemination, which, through an analysis of affective language use, might allow us to tease out some important differences in how affective publics develop in relation to illness and dying on social media.

Our aim with the book is not to schematize a universal theory covering all verbal and multimodal actions in the two cases, but instead to deepen our understanding of the “affective practice” (Wetherell, 2012) of writing – for example, interjections, hesitation dots, and emojis – on social media. In doing so, we wish to propose a way of investigating more or less spontaneous transmissions of reactions and affects by first focusing on the most-used expressions and prominent posts and second on when and how these expressions are (or are not) used over the larger lifespan of the groups and what this can tell us about their affective logics.

The empirical basis of the book is primarily collected digital material (material from social media) and secondly material creating knowledge about living a digital life (interviews about social media). More specifically, we use (1) social media and multimodal texts from Facebook related to the two cases and (2) supplementary interviews with the bereaved parents (the two mothers). In processing the material, the book will use a mixed-methods design that combines (1) linguistic, narrative, and rhythm analytical approaches (various forms of theory-based analysis) and (2) digital software (Digital Footprints). These methods are combined in order to be able to explore both the specific affective and linguistic qualities of the cases, including the type of responses they motivate, and to process the often extensive amount of online material. All digital material has been collected and is being stored (and deleted) according to the “General Data Protection Regulation,” and all use of direct citations deriving from the Facebook groups and the interviews have been approved by the people articulating them.

As part of this method, we have combined manual reading and close reading with digital counting. In Lærke’s case, we read all the blog posts and comments (249 posts and 2675 comments), but, in MIV’s case, due to its size (5,224 blog posts and 44,777 comments as counted by the methodological software Digital Footprints), we read all the posts but only comments on selected dates of importance to the overall development of the case. The statistical access to both cases offered by Digital Footprints enabled us to create an overview of the overall patterns of language use in the data, for example, lists of the 100 top words (both total and on selected dates) and lists of posts that generated the most comments and likes, though this of course does not approach the realm of “big data” or “data linguistics.” We rather used these digital counting tools to identify relevant focus points for conducting theoretical readings based on concepts such as affect, indexicality, modality, and rhythm concerning conventionalized language as well as phenomena on the periphery of the linguistics, such as interjections, emojis, hesitation dots, capital writing, and sign redundancy. Unlike other studies on mourning, we thereby insisted on exploring language use in its natural settings opposed to lab settings (Brubaker & Hayes, 2011). We also conducted a brief online interview with the mothers of Lærke and Magnus about their experience of sharing processes of existential struggle and grief in the Facebook group.

The two cases selected as main material for the book raise a range of important ethical questions, which we will continually bear in mind as we present the material. According to the 2002 and 2012 ethical recommendations of the Association of Internet Researchers (AoIR), what is ethically acceptable is highly dependent on the content, platform, and context of the study and “ambiguity, uncertainty, and disagreement are inevitable” (Ess & AoIR ethics working committee, 2002, p. 4; Markham & Buchanan, 2012, p. 4). An important ethical guideline, however, is to “do no harm” (Ess et al., 2002, p. 8), meaning that the research should result in no physical or psychological negative effects. We take this as our point of departure when dealing with the ethical challenges of the material. Following this, the collection of empirical material is based on informed consent by the parents, who were able to withdraw from the project at any time if they wished. All the regular users who commented on the Facebook pages have been anonymized; however, when quotations have been used that can be traced back to a specific person, this use has been approved by the person in question. Furthermore, we offered the parents the chance to read and comment on the book manuscript before it was submitted for publication. In doing so, we hoped to ensure that the parents were not hurt by our writing and, just as important, that the parents actually felt empowered and understood by our analysis and text.

NOTE

1. Throughout this book, the two children will be referred to as Lærke and MIV.

CHAPTER 2

THEORETICAL FRAMEWORK

2.1. ILLNESS, DEATH, AND EXISTENTIAL MEDIA

The two Facebook groups being investigated here are both examples of how social media is being used increasingly during serious illness and commemoration – and of how groups can transform from the former to the latter. Both Lærke and MIV suffered from cancer, which is among the most “commonly searched health topics on the Internet” (Nguyen & Ingledew, 2013, p. 662), and cancer patients in a Western context are increasingly using the internet to find information about diagnosis, prognosis, and treatment related to specific types of cancer and side-effects (Ådland & Lykke, 2015; Castleton et al., 2011; Maloney et al., 2015). From a language and media perspective, the groups could have centered on any kind of serious and life-threatening illness, but the fact that the children had a cancer diagnosis is also important for the level of engagement and sympathy they stimulated. This is due to the fact that cancer is culturally situated in a way that differentiates it from many other diseases. First, cancer is a serious illness that people now fear more than any other disease (Alzheimer Europe, 2011; MetLife Foundation, 2011) and, second, many people have had a personal experience with cancer (either first hand or through relatives or friends). Third, it is a widespread cultural expectation that children do not get cancer and, therefore, reading stories about children cancer has a particularly strong potential to create (viral) empathy among larger audiences. In other words, audiences are culturally conditioned to quickly understand and relate affectively to the two social media groups due to the particular disease in question. This cultural logic – combined with the rise of social media – has had the consequence that ordinary citizens with cancer, who are not part of celebrity culture, can suddenly become the objects of forms of large-scale public interest and grief that involve people outside of their established social relations and communities.

The two groups also underline the fact that cancer – like many other illness practices – is undergoing a process of direct mediatization (Hjarvard, 2008), as previously unmediated practices (talking to family, friends, and doctors face-to-face) now take on a mediated form by moving onto support groups, blogs, or social network site (SNS) profiles. However, research has also shown an important (educational, ethnic, and income-based) digital divide in this use of internet resources during cancer (Høybye et al., 2010; Littlechild & Barr, 2013; Ziebland et al., 2004) – a point which is linked to more general patterns of social media use across different demographic segments.

A vast amount of health communication knowledge concerning cancer patients’ engagement with different (closed) support groups and (public) social media has been generated over the last 20 years. Research interests seem to follow the historical introduction and cultural salience of particular platforms. In the late 1990s to the mid-2000s, the main research focus was on peer support groups, email lists, websites, and message boards (Hardey, 2002; Høybye, Johansen, & Tjørnhøj-Thomsen, 2005; Sharf, 1997). After this, research on cancer blogging increased (Heilferty, 2009; Keim-Malpass et al., 2013; Ressler, Bradshaw, Gualtieri, & Chui, 2012), and, over the last 5–10 years, there has been a flourishing interest in the strategic health potentials of social network sites¹ like Facebook (Bender, Jimenez-Marroquin, & Jadad, 2011; Erfani, Abedin, & Daneshgar, 2012) and Twitter (Sugawara et al., 2012; Tsuya, Sugawara, Tanaka, & Narimatsu, 2014) and content communities like YouTube (Foley, Mahony, Lehane, Cil, & Corrigan, 2015). Perhaps surprisingly, compared with other platforms, Instagram and Snapchat (the latter’s status as a social media platform is of course contested (Klastrup, 2016)) remain relatively under-researched (Vraga et al., 2018; Warner, Ellington, Kirchhoff, & Cloyes, 2017). This could be due to their focus on sharing harder-to-handle visual – and, in the case of Snapchat, ephemeral (Larsen & Kofoed, 2016) – material.

The aforementioned research often focuses on specific groups of cancer patients, but across it there is an interest in measuring the percentage of platform users within the group, the various types of content searched for or shared on the internet/social media sites, user motivations for engaging with social media, and social media’s potentially therapeutic, peer-supporting, and de-isolating capacities. For example, the content on cancer blogs has been shown to be predominantly experiential and opinion-based rather than focused on medical knowledge (Chiu & Hsieh, 2012; Kim & Gillham, 2015). These blogs also allow patients to develop new peer relations and regain a sense of control (Ressler et al., 2012). A study of patients more actively reading and writing illness cancer blogs (Chiu & Hsieh, 2012) identified that patients engage in this activity for multiple and converging reasons; for example, to create a sense of biographical continuity and emotional relief, to cope with the risk of dying relatively soon, to diminish social isolation, and to find “lived knowledge” instead of abstract medical knowledge. The studies of cancer communication on social networking sites – for example, Facebook (Bender et al., 2011; Erfani et al., 2012; Stage, 2017) and Twitter (Sugawara et al., 2012; Tsuya et al., 2014) – support these findings and also emphasize that emotional and peer support as well as funding cancer causes (especially on Facebook) are salient features of this type of cancer communication.

Maria Andersson et al. have shown that relatives can use blogging during and after the illness of a family member for various reasons (Andersson, Gustafsson, Hansson, & Karlsson, 2013). Their study of 12 Swedish bloggers (who all had an ill relative) showed that relatives experienced blogging as a way to stay in contact with the outside world, to raise issues for public debate (e.g., medical practices), and to establish new social bonds with peers. A less positive consequence of writing a blog was the sense of vulnerability that resulted from unwanted media attention or a sudden increase in the number of strangers reading the blog. After the death of the family member, the bloggers felt that the blog helped them with their grief and emotional release and that it also helped them create a monument or an archive of memories for the deceased person.

In the illness narrative tradition, cancer has been the “master illness” (Sontag, 1991), and research on both book-based narratives and narrative work in clinical settings has often stressed how narratives support agency-building by creating a sense of structure, progression, and cohesion in the midst of “biographically disrupting” illness (Bury, 1982; Charon, 2006; Frank, 1995; Jurecic, 2012). In the fewer studies of cancer narratives in digital media, this focus has been continued, as it has been argued that cancer narratives and storytelling in digital media further the trend for individuals to reclaim an individualized – and not purely medical – voice (Coll-Planas & Visa, 2016; Nesby & Salamonsen, 2016; Orgad, 2005); this research also emphasizes the changed temporality of sharing stories of illness on social media, since this type of storytelling does not look back on a demarcated process but narrates the process as an ad hoc attempt to grasp events and changes as they occur:

The stories that narrators tell about their experiences of illness are not told retrospectively from the point of recovery, but as updates that appear discontinuously as the narrator documents their experiences while diagnosis and treatment unfolds. Sometimes the sequence of blog posts stops altogether without warning, perhaps ...