Involuntary childlessness online: Digital lifelines through blogs and Instagram

Abstract

Platformed sociality has become an elemental part of existential processes and struggles. Previous research has shown that digital contexts offer lifelines of support and a sense of belonging based on shared vulnerabilities. By combining phenomenological and ethnographic approaches, this article explores involuntary childlessness (IC) online in so-called trying-to-conceive (TTC) contexts on Instagram and in blogs. The analysis is driven by the following questions: What are the particularities of digital lifeline communication in the context of IC? Can lifeline communication shape what is coming into being in the context of wished-for children and/or motherhood? Can (digital) life be challenged, extended, or created in this context? Drawing on interviews and online posts from 260 Instagram accounts and three blogs, I argue that digital lifeline communication in TTC environments facilitates digital existence and “digital life” as the notions of motherhood and longed-for and lost children attain a form of digital materiality through posts and discussions.

Who will help someone who mourns someone who has not yet been born? Because that is what involuntary childlessness is. Mourning someone who has not been born yet . . . Let us find a way to support someone who mourns the loss of the one not yet born. (Instagram post, February 2019)

Involuntary childlessness (IC) is imbued with stigma and silencing (Archetti, 2020; Blyth and Moore, 2001; Forsythe, 2009; Miall, 1986), and especially, women are affected by sociocultural constructs of motherhood as a defining part of femininity (Letherby, 1999, 2002; McKennon Brody and Frey, 2017; Russo, 1976). Childless women are often assumed to be involuntarily childless and, more often than men, considered lacking or incomplete (Bell, 2013; Loftus and Andriot, 2012; Strif, 2005). Because of these dominant ideologies and stereotypes, women who have experienced IC often feel that they cannot meet the “ideal of motherhood,” even after having children (Letherby, 1999). Thus, involuntarily childless women share not only the longing for a child but also the outside pressures and expectations of childbearing.

In the midst of an overall mediatization of family life through so-called family or mommy blogs (Knauf, 2019; Webb and Lee, 2011) and online communities relating to pregnancy and childrearing (Arnold and Martin, 2016; Drentea and Moren Cross, 2005; Gleeson et al., 2019), online communities are also forming around fertility issues and difficulties conceiving. Participants are almost exclusively women, ¹ further reflecting the cultural view of IC as a “female problem” both physically and emotionally. In this piece, I will use the term “TTC ² (trying-to-conceive) environments” when referring to fora, blogs, or platform-specific groups characterized by providing either social and emotional support or information regarding fertility and fertility treatments. ³ Online, women who often feel unable or unwilling to confide even in friends or immediate family share intimate and sensitive experiences relating to childlessness. Online communication about infertility here induces what Suzanne Bost (2010: 342) calls shared vulnerability, as previously unacquainted participants form “unexpected identifications and relationships forged by illness as an alternate foundation for politics.” Awakening questions of meaning and purpose, the vulnerability of IC is also existential (Archetti, 2020; Westerlund, 2005), and I will explore in this article how the existential struggle of IC is entangled with online environments.

Previous studies on IC online have focused on the social factors of receiving support, rather than existential dimensions. Studies have often focused on blogs dealing with infertility (Bernhardsson, 2015; Harrison, 2014; Miller, 2008; Strif, 2005) and family building (Sohr-Preston et al., 2016), blogging motivations and practices (Knoll and Bronstein, 2015; Miller, 2008; Orr et al., 2017), community formation through blogs (Miller, 2008: 78; Webb and Lee, 2011; Whitehead, 2016), and online support communities (Haas, 2009; Malik and Coulson, 2013). Social media use during fertility treatments (Johnson et al., 2019), online disclosure behavior in relation to fertility treatments and pregnancy loss (Andalibi and Forte, 2018; Knoll and Bronstein, 2014), and online remembrance regarding pregnancy loss (Nesbitt, 2009) have also been studied. Studies on the use of digital applications to monitor fertility and pregnancy have focused on the performative aspects of application use (Johnson, 2014), how applications offer a sense of both responsibility and ludification in regard to pregnancy (Gareth and Lupton, 2015), or how applications advocate self-responsibility in relation to fertility and pregnancy in accord with a neoliberal zeitgeist (Lupton, 2016). The above studies speak of how IC, fertility treatments, and pregnancy are linked to the digital and underline the online as a source of information and support when facing IC. What remains to be explored is the existential linkage between IC and the online, which encompasses analyzing the structures of social support and connections online, but further entails an attempt to approach and understand “what it means to be a human in the digital age” (Lagerkvist, 2017a: 97).

My approach to media as existential is inspired by Amanda Lagerkvist (2017a, 2017b) and John Durham Peters (2015), who argue that existential feelings and processes belonging to the human condition in fact have become interwoven with digital technology, which thus has the potential to (re)shape important existential moments. Lagerkvist (2017a: 97) writes that “. . . digital media are existential media, also and particularly when people share and explore existential issues in connection with loss and trauma online.” Leaning on the existential philosophy of Martin Heidegger ([1927]1962), and particularly the concept of “thrownness,” indicating that the individual finds herself thrown into a pregiven world of contexts through which she is to navigate for meaning, Lagerkvist (2017a) develops the concept of being “digitally thrown,” thus embracing the digital as an important existential context. TTC environments, as I will argue, form existential media and present existential arenas yet unexplored, as they relate to a stigmatized and silenced state. TTC communication further relates to that which did not or is yet to happen, thus presenting other and different existential issues than those explored in previous studies, focused on death and illness (Andersson, 2017; Lagerkvist, 2017b; Lagerkvist and Andersson, 2017; Stage and Hougaard, 2018).

As a way to explore the existential role of online environments in relation to IC, I will use the concept of lifeline communication developed by Lagerkvist and Andersson (2017). Through their examples of weblogs by terminally ill and online support groups, Lagerkvist and Andersson (2017: 555) propose that the Internet itself becomes a lifeline by offering “individual and collective support, ethics, and agency” through four primary capacities. Lifeline communication is salvific in its capacity to help respondents hold on through a humanitarian charitable presence that is always available online. Digital communication and devices also offer mundane and material anchors when the threat of being swept away by the unknown seems most imminent. Maintaining online interactions or keeping blogs constitute ongoing projects that, moment-by-moment, keep death at bay. Lifeline communication can function as a life-sustaining activity, for instance, through online remembrance. With this in mind, this article seeks to add to and develop perspectives on the existential dimensions of digitalization by approaching the following questions: What are the particularities of digital lifeline communication in the context of IC? Can lifeline communication shape what is coming into being in the context of wished-for children and/or motherhood? Can (digital) life be challenged, extended, or created in this context? The examples of TTC-themed blogs and Instagram accounts in a Swedish context are explored through a combination of online ethnography and interpretative phenomenological interviews. Themes, practices, and meanings will be discussed in relation to lifeline communication in particular and an existential media ecology in general.

Approach

Heidegger’s ([1927]1962) existential phenomenology claims the inseparability of “being” and “being in the world” where the social world gives the individual’s meaning of existence, and the social world exists only in relation to persons (Jun, 2007). By combining interpretative phenomenological analysis (IPA) (interviews) and ethnography (online contexts and postings), this study aspires to be sensitive to and to describe social media communication as an existential process and meaning-making, on both individual and collective levels. The notion of a collective phenomenology is useful here, as it captures the different phenomenal dimensions of TTC communication, of which one is the awareness of shared feelings and experiences. Elisabeth Pacherie (2017: 169–170) describes collective phenomenology as a synchronization of shared experiences, for instance, through the commitment to certain norms or concerns, along with a mutual awareness of this commitment. Phenomenological approaches seek to capture the lived experience of individuals, that is, their being in the world, through their own descriptions, and IPA in particular explores existential matters that “are often transformative, brining change and demanding reflection and (re)interpretations for the individuals concerned” (Eatough and Smith, 2017: 205). Ethnographies strive to understand “a culture from the inside out” (Boellstorff et al., 2012: 168). The way in which both approaches are exploratory and use the researcher as the “data collection instrument” make them fit for combination (Maggs-Rapport, 2000: 219).

Interviews

Participants were purposefully selected for interviews based on their deep experiential understanding of the topic of online communication about IC. Furthermore, the subject deeply mattered to participants and had experiential impact on their lives, rendering IPA a suitable choice (Larkin and Thompson, 2012: 103). I found participants through their blogs or Instagram accounts and approached them via e-mail or private Instagram messages. All selected interviewees had used their blogs or Instagram accounts actively for some time. Although no specific time or post quantity requirement was set, a criterion for selection was that the amount and timing of posts indicated active and recent use. All interviewees were Swedish, heterosexual women suffering from primary childlessness, ⁴ who attempted to have a child with a partner, who they lived with or were married to. The women were in their mid-to-late 20s or early 30s, with one woman in her mid-40s.

I conducted 10 semi-structured one-to-one interviews, each lasting for approximately 2 hours. To acquire in-depth understanding of the experiential reality of participants who I regarded “experiential experts” (Eatough and Smith, 2017: 196; Smith et al., 2009), I encouraged participants to take the lead in narrating their stories, allowing me to pose follow-up questions. Preliminary interview questions were made available to interviewees before interviews, not only to give them an idea about the primary focus of the project but also to lessen their vulnerability and exposure in discussing sensitive and painful experiences with a stranger. Questions addressed meaning and importance of TTC communication, and also practical matters such as privacy settings and frequency of use. I recorded and transcribed the interviews to facilitate analysis, and the transcripts were made available to the interviewees to allow for correction, clarification, or the elimination of statements. No changes were made by the interviewees and all consented to the use of the material for publication.

Online ethnography

The online ethnography was initiated by following three TTC blogs chosen on the basis that they were maintained by Swedish women who shared their experiences with primary childlessness. Two of these bloggers also maintained TTC-themed Instagram accounts, which helped give insight into the TTC community on Instagram. Wishing to “enter the lifeworld’s of participants rather than to investigate them” (Eatough and Smith, 2017: 206), I created an Instagram account solely for research purposes and sought to follow TTC-themed accounts and hashtags related to IC. By reserving a separate account for the observation of TTC communication, my use and access resembled that of participants, who most often create separate accounts for TTC communication and go back and forth between accounts. Beyond protecting the privacy of participants, this also allows all TTC material to be collected into a single feed. ⁵

To set up observation on Instagram, I followed Swedish-language TTC accounts and subsequently made use of the built-in Instagram feature where further accounts are suggested based on previously added accounts. I added all suggested TTC accounts describing primary childlessness, resulting in primarily Swedish-language or Swedish-based accounts belonging to women, reflecting the gender distribution among active participants (writing, responding, etc.) in TTC environments. As it was important that participants made informed decisions about whether or not to approve me as a follower, the research account clearly presented my full name, contact information, the purpose, and research interest behind the account. Both blogs and Instagram accounts dedicated to TTC issues are often anonymized and the majority of Instagram TTC accounts use privacy settings that require users to approve each new follower; thus, I was approved by each individual user. All three bloggers gave their consent to the use of their blogs for research purposes. For one blog, I was provided a password that was needed to access certain posts. All direct quotes were approved by participants. For the study, all newly added accounts described pregnancy efforts, fertility treatments, or pregnancies after IC, but as time progressed, some of them came to describe successful pregnancies and births. As I have not experienced IC, I do not share the deep experiential understanding of IC that unites those who have. Immersing into TTC communication through daily visits however allowed for familiarity with prominent topics, ongoing discussions, and community norms. Although I wanted to be clear and upfront about my presence and motives, I also wanted to minimize my impact on the environment and thus made a choice not to interfere by liking or commenting posts.

Online sample

Three blogs and approximately 260 Instagram accounts were included and the different attributes of the two sources led to somewhat different approaches in terms of data collection. The blogs, which were substantially fewer, were read in their entirety and contained about 200, 400, and 4000 posts, respectively. As the platform name of Instagram implies, recent content is clearly accentuated. Although it is possible to access older posts by visiting user profiles, followers react to and comment on recent posts that are presented as a feed, quickly outdating earlier posts. As I wanted to focus on the active exchange in TTC communication to ensure “a deep understanding of the object or culture under study” (Boellstorff et al., 2012: 168), it made most sense to use Instagram in the same way as TTC participants did. The exact number of posts is difficult to estimate, but the 260 accounts have produced thousands of posts during the research period. By scrolling through all new posts during each daily visit, I made sure to read all posts during the research period (see “Thematic analysis” section).

This study focuses on written content based on two primary reasons; how Instagram is used in TTC communication and Instagram features identified by participants as motivating platform choice for TTC communication. Based on interviews and online observations, Instagram is not, although originally designed as such, used primarily as an image-sharing tool in TTC communication. Instead, the centrality of written content in TTC communication is evident through the published entries, which often resemble those found in blogs, where images illustrate and function as add-ons to lengthy texts. This marks a difference in comparison to other modes of Instagram use, where images may be accompanied by no text at all or very short captions. Images have not been subject to detailed analysis and will not be described in the discussion but do contribute to the overall tone of posts and have in this way impacted interpretations during analysis. Presenting and analyzing images separately could potentially have enriched the analysis by providing an account of how visual elements are used in existential online communication. Furthermore, there may be entirely image-based posts, meaningful to existential lifeline communication, that have been omitted in the analysis due to the focus on written accounts.

Regarding platform choice, respondents identified Instagram affordances such as tailoring their own communities, maintaining anonymity, and communicating in an unfiltered way as their motivations for platform choice. This corresponds with results from previous studies on Instagram use in communication about chronic (Isika et al., 2020) or mental illness (Feuston and Piper, 2019), which point to Instagram use in sensitive and difficult life situations as motivated by platform affordances, such as possibility to compartmentalize accounts and audiences, rather than image sharing.

Thematic analysis

Online content and interview data have been analyzed to identify themes through an approach proposed by Braun and Clarke (2006). According to Braun and Clarke (2006: 86), familiarization with the data entails the first phase of analysis. There is no clear-cut division between phases; the collection of data and transcription of interviews are, for instance, parts of the analytic process when “patterns of meaning and issues of potential interest” are initially identified. For instance, my frequent visits to TTC blogs and Instagram contributed to a thorough understanding of the community environments, their norms, and qualities. During the online observation of Instagram and blogs, I took careful notes and screenshots of posts reflecting wider topics and themes permeating the material. The second phase entailed generating initial codes from the interview transcripts and a collection of screenshots of approximately 200 posts from Instagram and blogs. These 200 posts reflected and represented dominant themes and characteristics identified within the entire online material, and collected along with notes during the research period. In this phase, I focused on semantic content and language use as proposed by Smith et al. (2009: 83), and thus issues explicitly addressed in the material. The online material was collected into different folders, and the transcribed interview data were color-coded according the initial codes of (1) journey, process, identity, and existence (in and through TTC communication); (2) public, private, distance, and closeness (in and through TTC communication); (3) negative feedback and consequences (in and through TTC communication); (4) community and norms (in relation to IC and TTC communication); (5) digital technology and affordances (in relation TTC communication); and (6) gender roles and stereotypes (in relation to IC and TTC communication). The third phase entailed identifying actual themes capturing “something important about the data in relation to the research question and represents some level of patterned response or meaning within the data set” (Braun and Clarke, 2006: 82). Thus, meaning was uncovered and themes relating to existential qualities and lifeline communication were identified in both online material and interviews which were analyzed in relation to each other. In phase four and five, themes were reviewed and some thematic categories stood out as more important, while others were disregarded or collapsed into each other. For instance, issues with privacy (digital technology and affordances) and unsensitive posts (community and norms) were interpreted to belong to one of the main themes identified as shared vulnerabilities. Finally, themes representing the most significant existential capacities of TTC communication were identified and named as (1) shared vulnerabilities, (2) the digital as an ongoing project of a child (to be), and (3) lost or future children and thus motherhood. In the discussion, themes are presented and exemplified through individual posts, statements, or observations that reflect wider topics and themes.

Results

Interviews and the online ethnography have generated findings with somewhat different emphases. The online material is often entirely focused on TTC matters and allows for long-term narratives about different periods and phases of TTC to unfold, where each post reflects emotions and experiences as they were lived at the time. Online material has also made the use of technology clearer in terms specifically how, and with whom, participants engage in TTC communication. Together, the collection of posts in each blog or Instagram account as well as the live feed reflects and materializes how individual and collective existential work unfolds through TTC communication. Interviews, on the contrary, have allowed nuances and ambiguities in relation to TTC communication to surface, as women, for instance, have stressed that they “don’t always think about IC” and that IC “is not all that they are.” Here, reflection on the raw emotion from previous posts (or deleted posts) has also brought nuances to the understanding of TTC communication. The combination of methods resulted in identifying TTC communication as existential media through its capacitates of (1) shared existential vulnerabilities, (2) the digital as an ongoing project of a child (to be), and (3) lost or future children and thus motherhood.

Shared existential vulnerabilities and online lifelines

While having children is highly normative and socially expected, especially for women (Letherby, 1999, 2002; Russo, 1976), the grief and sense of loss resulting from fruitless efforts to do so remain culturally contested (Browne, 2016; Layne, 2003). Analyzed posts on blogs and Instagram, as well as the interviews with affected women, disclose a common feeling of not being understood by others, while TTC communities are referred to as places where someone who understands is present to listen, thus forming the capacity of lifeline communication that Lagerkvist and Andersson (2017) call a “humanitarian charitable presence.” Constructions of “sisterhood” binding involuntarily childless women together are especially evident on Instagram. Other involuntarily childless women are often referred to as “sisters,” either through hashtags or through descriptive text. A language of kinship thus highlights the bonds that women construct and maintain online based on shared vulnerabilities with previously unknown others:

. . . Is it not awful really? . . . That those I actually know engage less with me, my husband and what we are going through than you do on this account. On the other hand, that makes me all the more humble and grateful to have this account, and above all YOU. (Instagram post, March 2019)

Blogs typically form clusters around specific topics, where groups of readers follow certain blogs, the topic of IC being no exception (Miller, 2008; Sohr-Preston et al., 2016). TTC accounts on Instagram follow each other based on topic of a similar manner, while participants may choose to follow a narrower selection of accounts, focusing on those sharing the same diagnoses or backgrounds. As involuntarily childless women formulate and publish themselves through their blogs or Instagram accounts, readers are presented with all of their medical, practical, and emotional stages of IC and fertility treatments as they unfold in real time. Several participants expressed the wish to carefully choose with whom to share issues related to IC and/or subsequent fertility treatments and thus maintain several Instagram accounts, that is, one that is TTC themed and another that is often described as “private.” Participants are often careful to keep different accounts separate, which does not always work as the platform may suggest their account to unintended audiences from other networks, who are not intended to know about their TTC status.

TTC communication offers a sense of safety and commonality, not only through the connection with those sharing similar experiences but also through the exclusion of and distance to insensitive and naïve others. Lifelines in TTC environments are spun through both literal digital and symbolic linguistic “walls” that enable the separation of TTC community members and their blogs or Instagram accounts from other types of accounts. Beyond often taking measures to stay anonymous, some blogs require passwords for entry, and Instagram accounts usually require approval to be followed. Instagram presentation texts often include phrases such as “only TTC” to signal exclusiveness among involuntarily childless. Thus, account holders can, to some degree, regulate who is or is not granted access to their accounts and personal stories. Presentation texts, as well as posts on blogs and Instagram, often include jargon and abbreviations only familiar and relevant to fellow involuntarily childless, referring to treatments, medications, diagnoses, and so on. Some terms are medical and scientific, such as IVF, referring in vitro fertilization, while others, such as a big fat negative (or BFN, that is, pregnancy test), are colloquial (see also Miller, 2008). Emoticons are used similarly, where certain symbols are indicative of IC or fertility treatments. Eggs, for instance, symbolize the number of eggs retrieved for IVF treatment, while angels symbolize lost pregnancies or children. An atmosphere of inclusion and exclusion is thus enhanced, as private accounts and password-protected posts also include linguistic codes and “walls” that only certain readers can decipher, in turn highlighting the need of safekeeping from those who do not care or understand.

This is manifested in the rules of conduct created by community members to respect vulnerabilities related to IC, which, in their experience, are seldom considered in other settings. To do this, built-in features on Instagram are used, for instance, to protect others from topics and images that might be regarded as (in)sensitive or upsetting. As one may post several images in one post on Instagram, the (unwritten) rule of conduct is not to post unanimously regarded sensitive images of, for instance, positive pregnancy tests or ultrasound images as the first image. To allow others to brace themselves or to avoid certain themes altogether, one is also supposed issue a “trigger warning” ⁶ in text when posting about sensitive topics. Thus, we see platform affordances picked up and put to use in specific ways to meet the needs of the community. This rule falls in line with the findings of Whitehead (2016), who identified pregnancy, rather than children, as a triggering factor of TTC environments, as pregnancy so clearly marks women’s path to biological motherhood:

I feel like every time I use my “ordinary” Instagram there is always a pregnancy announcement or some pregnant belly . . . always! . . . I don’t have the energy to like or to congratulate anymore. Soon, I will remove that shit, like I’ve thought about doing so many times (sad emoji). (Instagram post, March 2019)

As any Instagram user decides which accounts to follow and who to accept as a follower, users can customize their own TTC communities, for instance, by excluding pregnant users or users suffering from secondary childlessness. Therefore, the content in each participant’s feed can vary considerably, although they might share several followers and followed accounts. It is common and accepted conduct for those who have not achieved pregnancy to unfollow the Instagram accounts or blogs of those who have. The norm is not to get upset if followers decide to leave, which is also often explicitly stated in posts announcing pregnancy. Some of the participants reported feeling strongly connected to the community and feeling rejected and surprised when, after they had achieved pregnancy, they were excluded from some communication and some accounts. On the contrary, several interviewed women explained that those who do become pregnant are expected to remain followers, thus demonstrating their loyalty to those still struggling. There are also testimonies of opposite feelings, where women indicated that they feel more hopeful when learning that others have received good news.

At its core, TTC communication is existential, as it indeed forms online lifelines through the shared vulnerability of IC. There are certain differences between blogs and Instagram, as they offer somewhat different affordances. Several participants, for instance, stressed the way in which Instagram offers discussions, answers, and reactions to a higher degree than blogs do. Although participants on these fora come with and develop different strategies and reactions, they seek out new forms of intimacy and new bonds online to navigate through existentially rough and uncertain passages of their lives.

The digital ongoing project of a child (to be)

The journey through childlessness

Analyzed social media posts and interviews display recurrent references to IC as a “journey,” “struggle,” or “fight,” and women often self-label as “fighters” or “warriors.” Furthermore, women find TTC communication to be an essential part of their journey through childlessness. Beyond expressing the emotional and physical tolls experienced during IC and offering a place where one is understood, TTC blogs and accounts are often formulated as “the project of a child.” This closely resonates with the findings of Lagerkvist and Andersson (2017), who argue that, as part of lifeline communication, an ongoing project such as a blog functions as a way to keep death at bay during mourning and illness, as the active use of digital media helps anchor those existentially thrown. The anchoring capacity of TTC communication seems to be associated with two primary functions. First, it offers stability, as it withstands the turbulent changes and disappointment that participants go through and offers a setting for unfiltered communication and complete honesty:

. . . It’s been a year since I first posted on this account (emoji with startled face and emoji with heart shaped eyes) A year of so many lows but also so many highs, old friends who have disappeared, and the arrival of new ones—I honestly do not know how I would have made it through without this community (heart emoji) . . . (Instagram post, January 2020)

Second, accounts and posts form projects, formulated as open but developing narratives, where the “struggle” or “journey” of IC takes on a digital materiality. Blogs and Instagram accounts create “banks” of posts that give a collected digital materialization of efforts and measures undertaken to achieve parenthood. The experience of IC and fertility treatments is undoubtedly always already material and concrete, as they are felt and lived. What I am suggesting herein is also the digital materialization of the broader existential dimensions of coming to terms with IC. Women identify through individual projects a point in time that marks the beginning of their journey, such as the moment of realization that conception would be difficult or a miscarriage, followed by treatments, successes, and disappointments that create an overall progressive narrative. The digital platform enables hopes, fears, and wishes, along with concrete events such as stages in treatments to concretize the (existential) “journey” of IC into a timeline of posts that can be revisited. Most importantly, interviewed women express that digital media not only reflects their journeys, but indeed becomes vital parts of them. Participants describe online communication through taxing treatments and uncertain existential outcomes in terms of “helping them hold on” and “keeping them alive,” referring quite literally to the salvific function of (Internet) lifelines described by Lagerkvist and Andersson (2017) and certainly illustrating Lagerkvist’s (2017a: 97) claim that digital media are existential media when existential issues are explored online.

Information-sharing and negotiation online

Both blogs and Instagram accounts are used to share information about medical treatments and alternative means to achieve pregnancy. Instagram is, however, to a higher degree characterized by information-seeking and discussion concerning different options or alternatives, whereas blogs to a greater extent narrate current circumstances concerning the individual blogger. As women stress the importance of their blogs and accounts, they refer not only to their wellbeing but also to social media as used to acquire knowledge in relation to fertility and fertility treatments. Women are often told by medical professionals not to “Google” their treatments, or in other words, not to look for information or experiences online. However, many women feel a need to fully understand the motivations and alternatives regarding their treatments, as well as possible reasons for the failure of certain protocols, and experience further that their level of knowledge corresponds with the level of care they receive. It is evident from the analyzed material that women undergoing fertility treatments regularly disagree with medical experts in control of their care and frequently present critical questions and offer suggestions on how to proceed. Women underscore the importance of the online environments as sources of information; even stating that in this regard, they become even more important than medical professionals. Other women who are going through similar experiences are seen as collectively forming a bank of information, as their posts offer critical thinking and a willingness to look beyond a standard protocol. Participants ask for advice and share information about different protocols, vitamins, supplements, and other measures that may be taken to increase chances of pregnancy. These findings correspond with the findings of Johnson et al. (2019: 10), who claim that “patients are using IG [Instagram] . . . to give and exchange medical expertise,” and those of Harrison (2014: 348), who argues that fertility blogs are “part of a changing dynamic between doctor and patient, in which patients proactively search for and exchange information”:

I made the mistake of trusting my physicians at the beginning of my journey, not reading up on what you could do yourself to better your odds. That cost me two years. My strongest recommendation is to read up as much as you possibly can and alongside your medical treatment, do what you can yourself . . . about two months before each transfer, I was very strict about my diet, food supplements and other habits, and I think that helped me. (Comment to Instagram post, August 2019)

Projects as part of existential lifeline communication through TTC blogs and Instagram also reflect discourses of self-responsibility. When willpower and determination are associated with treatments and their outcomes, it is also implied that one can (and must) make an effort to improve chances of successful results. Although women often express doubts about the effectiveness of some of their actions to improve fertility, taking action still seems to bring a certain amount of reassurance. Deborah Lupton (2016) discusses how digital applications used to monitor fertility and pregnancy reflect neoliberal expectations of self-surveillance and self-responsibility extending to fertility and pregnancy. The intimate details women share about their bodies and fertility in online posts also reflect discourses of self-surveillance and self-responsibility, and simultaneously become part of the ongoing project of a child. The texture of vaginal bleeding and discharge can, for instance, be discussed in great detail to determine what symptoms might indicate in relation to fertility or a desired pregnancy. The body is turned “inside out,” and aspects normally hidden under clothes and in the privacy of bathrooms are shared with others. Here, as the “exister” is stumbling through IC, online discussions regarding medical decisions and treatments also have existential implications. What might seem empowering at first glance can become draining in the long run, as accepting responsibility for one’s own fertility and chances of becoming a parent can become a massive existential burden.

The online environments function to create meaning and a sense of cohesion. On a community level, participants collectively strive to create a space for inclusion and understanding for the involuntarily childless as a group, as the TTC community regard them as left out and misunderstood in most contexts. The Internet lifeline grows important as a means of highlighting themes and issues relating to IC, unacknowledged elsewhere. Some accounts remain active after successful treatments, while others cease to be updated. A number of women rename their accounts or start new ones after achieving pregnancy or after the birth of a child. However, new posts often relate to their previous engagement in TTC issues and the strong sense of connection that often remains to a TTC identity and the lifelines found online. It is precisely this desire to find inclusion and commonality that speaks to the existential qualities of online TTC communication and illustrates how it truly functions as an (Internet) lifeline.

Motherhood and longed-for and lost children

TTC communication constantly revolves around motherhood and longed-for children. Both women who have suffered pregnancy losses and those still longing for their first pregnancies have added posts describing already being mothers, without having a child to “mother.” Bernhardsson (2015) describes narratives of lack appearing in infertility blogs, and although lack is certainly an important element, there are further implications. It is not only or even primarily absence that we witness in the material collected herein. Rather, going back to Durham and Peters’ (2015) and Lagerkvist’s (2017a) view on digital media as an inseparable part of the existential processes and as potentially sustaining life, TTC Instagram and blogs offer tangible instances of the creation of life. Whereas Lagerkvist (2016) in her work on memory online has used the concept of “implied bodies” to describe how individuals once alive are “kept alive” online through sites of remembrance, online spaces dedicated to childlessness present another kind of implied bodies. Like the process of dying, the (corporeal as well as affective/emotional/existential) process of conceiving (or trying to do so) enables children who are never born in the physical world to be “born” digitally, as their mothers create online places to share and discuss their brief (or future/would-be) lives. Blogs maintained by dying individuals create digital archives that remain after their passing, thus in some sense sustaining their lives. The remembrance of a child lost in early pregnancy, or even the wish for a future child, creates an online/digital existence for a child, who might never be recognized by friends or family of the mother, or any official record. In this way, these digital presences tap into the same questions of how and where we exist and how and when we cease to exist, as the digital traces of those once here:

On Sunday, it was Mothers’ Day. A horrible day for all mothers who are yet to have their child. Who do not know yet when—or if—they will meet their child. I am one of those moms. (Instagram post, May 2019)

The frustration among women who feel that their experiences as mothers or mothers-to-be are disregarded is evident in a number of blog and Instagram posts. Both those who have suffered pregnancy loss(es) and those hoping to experience pregnancy are affected by the cultural ambivalence surrounding which pregnancies and forms of motherhood count as legitimate. Women who experience pregnancy loss, especially early on in pregnancy, are caught in the middle of diverging cultural forces, according to Layne (2003: 16). The creation of children-to-be and mothers-to-be starts as soon as pregnancies are made official—or even before that. Fetuses are referred to as “babies” from the very beginning of (wished for) pregnancies in social interactions but also in cultural products such as books on pregnancy. Although fetal personhood is constructed through numerous medical and social channels from early pregnancy, it is often culturally denied when pregnancy losses do occur (Layne, 2003: 16; Nesbitt, 2009: 45). Online lifelines, offered in the form of humanitarian charitable presences in online TTC communities, play a major role for some of these women as they allow the expression of issues and emotions that lack other outlets. A woman who lost her pregnancy at an early stage wrote the following in an Instagram post:

How I loved to have you inside of me, even if it was just for a day. I wonder when you disappeared, and why. We saw the tiny bubble that was you on the computer screen and I loved you even then . . . (Instagram post, February 2019)

An interviewee who maintained a TTC blog described the difficulties she experienced following IC and fertility treatments on her blog. She conceived after several IVF treatments but lost her child at 22 weeks of gestation. The blog describes each step of treatments until she could finally post an image of a positive pregnancy test on her blog. The blog then goes on to describe the development of the pregnancy until the child was found to no longer have a heartbeat. The parents had already named their daughter, and the mother went on to address her daughter directly in her blog, as well as to describe her loss directly to the reader:

Beloved little Sarah. Today, it has been a week since we found out the terrible news that you had left us. The grief is enormous. I miss you with every breath I take. It hurts so terribly, but I’m breathing. I’m alive. I will try to live on and remember you forever. (Blog post, July 2012)

In their blogs and Instagram posts, other women have written about pregnancies lost early on and described them as “lost children.” Often, the duration of pregnancy is not regarded as being as important as the fact that they were pregnant and they were going to have a child. The digital environment here becomes a possibility and a place where existence may continue, that is, where the motherhood of affected women can be expressed. Posts where women work through the grief of their loss by addressing their “would-be child” directly are rather common and often connected to special occasions such as birthdays or estimated birthdays. This resonates closely with the findings of Nesbitt (2009), who has studied websites of remembrance created by women who have suffered pregnancy losses. An issue that Nesbitt finds to be especially pressing is that women who have lost pregnancies, but still identify as mothers, are not able to conform to society’s expectations connected to motherhood. First and foremost, they have no child visible to others. Here, Nesbitt shows that the website offers a material space in which the child does exist and can be “introduced” to others. In relation to this, both analyzed posts and interviews indicate that there are certain milestones attached to IC and fertility treatments, such as achieving pregnancy, regardless of whether that pregnancy can be carried to term. Children and parenthood are partially materialized before they are visible or tangible in any other form as the milestones of IC are recorded in the online milieu, creating a digital existence that mothers may return to.

Conclusions

Previous studies focusing on IC and the online have found that online outlets allow sufferers to express stories previously never vocalized (Bernhardsson, 2015; Harrison, 2014; Miller, 2008) and function as key components for social support and understanding (Malik and Coulson, 2013; Orr et al., 2017). By exploring TTC communication through the lens of existential media studies, I have approached participants not merely as “users,” but also as vulnerable “existers” in their “being-in-and-emerging-with digital technology” (Lagerkvist and Andersson, 2017: 560). I have found that TTC communication practices encompass online support and exchanged experiences, but more than that, function as vehicles of existential process and change. Specifically, this article has pinpointed major themes in existential lifeline communication in Swedish TTC contexts. These themes include online lifelines based on shared vulnerabilities, which in this case are particularly concerned with privacy and audience segmenting, the digital environment as an ongoing project of a child (to be) and, finally, lost or future children and thus motherhood. As I have demonstrated herein, lifeline communication relating to IC is unique in its capacity to create rather than sustain digital existence or even life. Whereas Lagerkvist and Andersson’s (2017) idea of lifeline communication as life-sustaining relates to online projects or remembrances of those who indeed lead or led offline lives, my example instead illustrates how digital lifelines and lifeline communication challenge, extend, or create existence in the context of wished-for children and motherhood. Here “mothers who are yet to have someone to mother,” or those who have lost pregnancies, are offered a tangible materiality of motherhood that never existed in the offline realm. Precisely because of the tremendous importance that participants often attribute to TTC communication, it is also imbued with risks. As communication happens in commercial venues such as Instagram, that own the contents, participants always run the risk of changed user terms, or losing their material. Changed circumstances, such as pregnancies, at times also cause abrupt and unexpected changes and severed digital lifelines between participants.

This study has and can only discuss and analyze the existential work online of those who choose active participation in TTC communication. The experiences of those who do use digital outlets as sources of information or identification, but who remain silent observers, have not been heard in this study. Studying TTC communication online, which presents an overwhelming majority of women, also leaves out the experiences of men. Men might experience IC differently from women, but the close to total absence of men in online settings is hardly evidence of men remaining unaffected. Rather it seems that the cultural stigma of men opening up about fertility issues and pain in relation to IC prevents them from participating in TTC communication, even anonymously.

By discussing platformed sociality as a pivotal part of the existential struggle and process of IC for numerous sufferers, this article has also attempted to widen the perspective of existential media studies that have predominantly dealt with illness, mourning, and death (Andersson, 2017; Lagerkvist, 2017b; Lagerkvist and Andersson, 2017; Stage and Hougaard, 2018). IC is imbued with particular existential implications, as the state is stigmatized, silenced, and concealed. In contrast to bereavement in “the fertile world,” the inability to conceive or the loss of an unborn child might not be acknowledged by the outside world (Layne, 2003). Unlike permanent, definite losses, such as through the death of a loved one, IC is associated with a prolonged sense of hope for change, which also causes a prolonged period of existential suffering due to uncertainty and lack of closure. I have found that online environments, in their capacity to allow anonymity and spaces for issues silenced elsewhere, have special import for the involuntarily childless.