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Making Sense of Miscarriage Online

2015; Wiley; Volume: 46; Issue: 1 Linguagem: Inglês

10.1111/josp.12089

1467-9833

Sarah Hardy, Rebecca Kukla,

Historical Gender and Feminism Studies

The idea that the institutions and practices of medicine shape our bodies and bodily experiences is by now familiar. Being “pre-hypertensive,” living with cancer, having a disability or a chronic illness, and even being male or female are all bodily states and experiences that are thoroughly mediated by medical institutions, routines, procedures, and meanings. Not only does conventional medicine intervene on most bodies in developed nations, through surveillance, testing, diagnosis, and treatment, but it imposes a temporally complex narrative structure on our embodied lives. This structure is often demarcated in precise quantitative terms. As we are brought into the fold of medicine, we come to structure our lives around the times between appointments, between doses and labs and stages, and between receiving readings we get on various tests and screens. Consider how the life cycle of women and men is medically differentiated: many women have annual pap smears for decades, then mammograms, then tests for osteoporosis; many men begin their lives with circumcision, are routinely checked for testicular cancer after puberty, and launch late middle age by entering their prostate testing years. These medical units and markers of time and bodily status are not enclosed within a bounded medical space. Instead, they are integral narrative signposts within rich social and personal identities that are essentially bound up with medicine. Being a depressive, or a cancer survivor, or a diabetic, or someone trying to conceive involves inhabiting a social identity embedded in clusters of narratives and meanings that are given meter and determinacy by medicine. Miscarriage, against this background, is a strange event—one that many women experience as uncanny. In one sense, it is an event with medical significance: going from pregnant to not-pregnant because of fetal demise constitutes a significant shift in medical status. And yet, in an important sense it happens outside of medical space and attention, or perhaps more precisely, it often signals the end of medical attention. Not only does medicine offer no tools for reliably predicting or preventing miscarriage, but also, when women stop being pregnant, they typically cease to be of medical interest. From the point of view of health care professionals overseeing a pregnancy, miscarriage constitutes the end of a medical narrative rather than an event within one. Routine miscarriages are accompanied by no particular follow-up care, despite being bloody events that are often painful and traumatic. When fetal demise is detected from a screening test such as an ultrasound, often women are sent home to wait out the expulsion of the fetal body in their own domestic space. Sometimes they are referred elsewhere for a surgical extraction at some future date. But health professionals do not treat such a procedure as an emergency, nor do they usually treat it differently than a regular abortion, so women who are waiting for and then receiving this procedure may get no miscarriage-specific attention or care. When it comes to bodily events and changes, we are used to using the tools, discourse, and practices of medicine and its expertise as a frame within which to understand our own experience. But miscarriage can leave women in an oddly unhelpful relationship to medicine. Women who miscarry can find themselves bereft of public tools and resources for understanding and mediating their experience. And yet, many experience miscarriage as a momentous or even an identity-defining event. For many women, miscarriage ends a wanted pregnancy; for others, miscarriage may be a relief. Sometimes a woman may learn she was pregnant only when she miscarries. In all these cases, emotionally processing the event and giving it sensible articulation may be challenging. Whatever a woman may feel about her pregnancy, miscarriage can be a physically dramatic and often scary event that involves not only blood and pain but also abrupt hormonal changes. And miscarriage is almost always unexpected. Against all this background, miscarriage can bring women's attempts to understand and articulate their experience to a crisis point. The loss of a potential child, whether that child is wanted, unwanted, or a source of ambivalence, frequently constitutes a narrative rupture. More broadly, in the face of a miscarriage, women can lose the ability to make sense of what they are experiencing and how it fits in with their larger life story, plans, social identity, and embodied sense of self. In this article, we explore how women work to give narrative shape to their experience of miscarriage through online spaces such as Facebook, discussion boards, and blogs. These sites provide frameworks that are interestingly defined by their outsider relationship to medical spaces. Formal institutions of medicine exert a structuring force over them, yet they do so, in part, by their absence or silence. For instance, medicine is riddled with numbers: when one is under medical care, one measures time and bodies in weights, weeks, blood cell counts, viral load counts, and more. In online efforts to articulate their embodied experiences from outside medical spaces, women often use quantitative and numerical markers that mimic medical discourse, yet they mark this discourse as separate from official medical discourse. We are interested in how temporality gets structured through these conversations and engagements, given that a lot of the narrative content in a miscarriage story involves waiting—waiting for the fetus to expel itself, waiting for an appointment for a surgical extraction, waiting for grief to lessen or for the medical go-ahead to try for another pregnancy. Because it might seem empty or open-ended, waiting is difficult to narrate and articulate, and medical professionals and institutions have no interest in these waiting times. Yet, as we will see, women often do not experience these as passive or empty periods of time, but as periods of anxiety, including epistemic anxiety, and as saturated with complicated bodily and social meanings. We will track how women articulate their experience online, including their use of discourse structured by medicalized logic, to give narrative shape and stability to otherwise unstable experiences. One of our central interests is in how the process of articulating and negotiating the experience of miscarriage online is bound up with the project of shaping narrative identity for many women. Indeed, as we will see, often women are constructing multiple narrative identities simultaneously that are crafted for different contexts, some of which may be reasonably stable and permanent and others of which may be quite fleeting or strategic. Although it is not our task to defend this broad theoretical claim in detail, we take it as both given and important that there is a rich interplay between the construction of a presented identity, performed in discursive space and given narrative form, and actual lived identity. Work on relational autonomy and narrative identity by feminist philosophers1 (among others) has emphasized at least two (in our view interdependent) points. The first is that personal identities are fundamentally collaborative achievements; they emerge in and alongside specific communities that are enabled by the spaces that contain them. We enact our identity in social space, and unless others give uptake and recognition to what we do and who we are by responding appropriately, holding us accountable for who we claim to be, we cannot in fact be successful at this enactment. As Hilde Lindemann puts it, the maintenance of identity requires that others “hold us in personhood” by giving concrete uptake that sustains us and entrenches us in our identities.2 The second is that in presenting an identity that others can recognize and hold us to, we need to give that identity recognizable narrative form. Doing so requires that we draw on the sense-making resources of the various communities in which we are embedded. Lindemann argues that “personal identities consist of a connective tissue of narratives—some constant, others shifting over time,” and that this tissue depends also on the stories of others.3 But narrative that makes sense in one context, allowing for the meaningful uptake that enables it to continue, may well not make sense in another. Putting these two points together, we find that personal identities require sustenance from communities within which they are recognizable. When we present ourselves as enacting specific narratives, we also help constitute our own narrative identities, by exerting control over how others will both recognize and respond to us and thereby further direct and determine our narratives. Accordingly, as Lindemann also insists, there is “a complicated interaction of one's own sense of self and others' understanding of who one is.”4 Which communities we inhabit will affect both the sense-making resources available to us and what kinds of identities we can meaningfully perform and sustain. Against this background, the impact of miscarriage on women's attempts to give narrative form to their identities is at least doubly interesting. On the one hand, as we have already suggested and others in this issue also discuss, miscarriage is a distinctively hard-to-articulate experience that resists easy assimilation into a widely recognizable narrative. On the other hand, as we will see, many women who have had a miscarriage have made use of the sheer proliferation of communities online and of the relative ease with which such communities can be created and shaped. The Internet provides an unprecedented and dizzying source of communities united by common experiences, as well as equally unprecedented tools for creating new communities. Women are using these new resources to find ways of getting uptake for and giving shape to narratives that were previously resistant to articulation. Some of these communities are highly ad hoc, and women may enter them only temporarily, such as discussion boards for women who are currently in the process of a miscarriage. Others may evolve into more stable communities that become more multifaceted and develop in unforeseen ways; some popular blogs provide good examples of this phenomenon. Furthermore, women may well enter into many online communities simultaneously, constructing different narrative self-presentations for different contexts. As far as we can tell, many women feel under no pressure to create one single, integrated narrative identity. For some theorists such as Christine Korsgaard, David Carr, Alistair MacIntyre, and Charles Taylor, narrative integration of the self across time is practically and ethically necessary, at least as an ideal. We do not presume the practical necessity of such integration, and empirically, we see many women sustaining multiple narrative threads that may be in tension with one another. Virtual technologies make the sustenance of such multiplicity dramatically easier. New communication technologies are not merely helpful props for traditional narrative articulation. In our view, they offer complex new tools that are changing what projects of narrating identity look like. They do much more than just increase communicative access to a wide range of people, although it is important that they do this as well. Our interest is in exploring how, in light of the disconcerting reality of miscarriage as an event both inside and outside of medical space and time, these online spaces are changing the experience of miscarriage and its aftermath, partly by changing how women build identities and perform them, with the help of others. As we will see in more detail, through their functional structure, these spaces create possibilities for qualitatively new kinds of collaborative interactions, communities, and communicative performances. Our goal is not to either glorify or vilify these new tools; like most tools, their use can be liberating, troubling, or (typically) both. Before we plunge into our analysis, we want to be careful to make its limited scope clear. Ours is not a project in either ethics or armchair psychology. We are not in a position to make claims about how these various technologies and discursive negotiations are actually impacting women's lives, or whether they are making them better or worse. Nor do we wish to speculate about the details of the phenomenological states of the women whose texts we are examining. We are interested here in a set of texts—texts that have both written and visual elements. We want to see how these texts play off of one another and evolve, and how new technological possibilities enable and constrain discursive possibilities. We are interested in tracking how identity and experience and time are negotiated and represented within these texts. As we just argued, we also believe in a rich interdependent relationship between discursive self-presentation and lived identity. But our materials are the texts themselves, and not the presumed feelings or events behind them. There are hundreds of discussion boards and online communities devoted to miscarriage and failed pregnancies; these feature a wide variety of themes and emphases. Some have a religious orientation; some are specifically for teens, and so forth. We will focus on the miscarriage boards at BabyCenter.com, using them to explore how this sort of platform can provide possibilities for self-presentation and self-articulation. BabyCenter.com hosts a variety of online communities related to pregnancy, childbirth, and parenting. Participants in any of these discussion groups get to them via a home page that includes discussions of baby names and queries about doulas or obstetricians for a given area, with a banner housing stable links for “Birth Clubs,” “Mom Answers,” and “Shop.” The site also hosts numerous active discussion boards concerning failed pregnancies, including discussion boards titled “Miscarriage Support (MS),” “Miscarriage Worries and Concerns (MWC),” “Recurring Miscarriages (RM),” and “Miscarriage, Stillbirth, and Infant Loss Support (MSILS).” By whatever route contributors find the BabyCenter.com miscarriage boards, they enter through the BabyCenter.com gateway.5 While some women go directly to the miscarriage groups, all participants in the groups are virtually surrounded by narrative and communal spaces in which they could have previously participated, spaces where they would now be out of place. In other words, they are there as members of a larger community related to pregnancy and childbirth even as their narratives turn in other directions. In many cases, these participants have been to BabyCenter.com before for earlier pregnancies. Others start there with questions about viable pregnancies and may join a birth club linked to their due date before migrating to a miscarriage board. Some, in the event of a miscarriage, continue to participate in multiple boards on the site. Unlike other discussion boards within this site, however, the miscarriage boards carve out an alternative space for those who have departed from conventional pregnancy narratives. Contributors to the miscarriage discussions may find themselves precipitously left without the support and shared stories that typically go along with pregnancy. Some participants will look to start a conversation or communities with other women who started out on their “birth month board”—that is, the board for people whose babies were due the same month—but who are now experiencing a miscarriage. OK, very few people knew I was pregnant and that I had suffered a mc. And its6 not their fault and I shouldn't be selfish and ruin their excitement. But dam it today I'm going to be a selfish, irrational bitch. Today I almost hate them. Today I envy them. Today I want what I'm missing. Today I long to have my head down the toilet, having not eaten all day and not being able to see my feet. … Sorry for the completely irrational rant, but I needed it. Thanks for reading. (MSILS 3/11/14) I don't think any of what you have said is irrational. I have all of those feelings too, it's good to have somewhere like here where we can vent them with others who understand x (MSILS 3/11/14) It is important to point out, however, that the boards are not a free space of creative articulation. Even as they allow for narration and response, they also impose constraints both explicitly and implicitly. For instance, some discussion groups urge participants to tell their stories with care: the moderator of “MSILS” warns newcomers “NO PG Announcements or Live Birth announcement this includes ‘Success Story' post. We are glad that you are PG or have had a baby. Not everyone is afforded that gift. The threads will be locked or deleted. You might find it more helpful to direct your post to these groups Pregnancy After Loss or Raising children after losing children” (MSILS, “The Rules,” 5/23/11). These guidelines suggest that one purpose of the group site is to actively enable narratives that focus on events that are otherwise covered over or crowded out by more conventional stories of conception, childbirth, and parenting. But in doing so, they also limit the kind of articulation that can go on. Less explicitly, the boards display various recurrent tropes (for instance that the miscarried baby is an “angel” and live births a “blessing”) that constrain storytelling even as they enable it. I'm 21 years of and my boyfriend and I were trying to get pregnant before he leaves to the navy. This past Tuesday we found out we were pregnant. 4 weeks and a half according to my dr. On Friday night I started bleeding heavily and called my dr and he informed me that from what I was telling him it was a miscarriage. . I haven't been to the hospital (he told me it wasn't necessary) but the pain won't go away. . What can I do. ? Or take? (MSILS 3/9/14) Here Karla211992 flags both that she is experiencing what feels like a medical event that requires consultation with her doctor and might require hospitalization, and that her doctor is effectively keeping her miscarriage outside of literal medical space. Not only does she get several suggestions but also two days later Butterflythesky writes “Just checking in … how are you?” (MSILS 3/11/14). In such cases, we see the boards serving as a kind of alternative to traditional medical space, with user-provided care and follow-up. The group entitled Miscarriage Worries and Concerns (MWC) is careful to announce when it is created that it “is not intended to replace the advice of medical professionals. This group is available to offer support to those who believe for whatever reason they may be experiencing a miscarriage. The group is intended for those who have not yet received a confirming diagnosis of a miscarriage” (MWC, “Welcome please start here,” 02/15/11). In spite of the disclaimer messages, contributors routinely ask for opinions and diagnosis; for instance, one thread includes photographs of home pregnancy tests taken twice a day for three days along with descriptions of spotting (Pharmercolee MWC 1/5/14). But even in more general miscarriage discussions, postings can involve specific queries about physical symptoms as they occur: “I passed something about the size of an almond and it looked like tissue. It was not a blood clot. I had an unusually long AF–two weeks. I took a HPT and I had a very faint positive. Does that count as a Miscarriage?”7 (MWC 1/2/14) The boards do not simply provide an alternative to medical space; rather, the discourse on them is often thoroughly structured by the language of medicine. Often it is riddled with the kind of quantitative markers that give it at least the rhetorical air of medical and scientific legitimacy and comprehensibility. Entries may include hormone levels, reports on blood tests and ultrasounds, and shorthands for various conditions and procedures. For example, TashaKanna reports “My first HCG level was 220+ then it reduced to seventy nine after two days. Now again it increased to 112 today. Just getting scared with my levels. Dont know whats happening. Now I was scheduled for OB US8 on Monday. Does anyone come across this. I'm worried that now it might be ectopic” (MWC 3/14/14). 7 early losses and 1 ectopic. We're finally expecting our rainbow in March! chelseaelizabeth4, MRMS 3/2/14 Often contributors will include in the signature space lists of other births and miscarriages, such as snwbrdrlz who signs her postings as “5 angel babies ∼ m/c: 05/03, 04/08, 08/09 ∼ EP (surgery): 09/27/09 and 2nd EP (MTX): 4/15/13 at 6w4d (edd 12/5/13) ATTC #1 Since October 2011” (MSG 5/6/13).9 These references establish a contributor as a proper community member, both physically and discursively. But they also establish the space created by the boards as one that is still importantly constituted in relationship to traditional medical space, discourse, and experience. In the context of miscarriage, women often seek to give articulate shape to temporal phases of waiting. Of necessity, medical practices are not much concerned with mere waiting. Indeed, waiting is demarcated, from the patient's point of view, as the time in between medically meaningful or addressable events. But its narrative meaning can be quite different from a mere absence. Women who are waiting to find out if they are miscarrying, or waiting, once they have learned of fetal demise, for the fetus to expel itself, often experience these waiting periods as emotionally complex and intense. They are liminal and anxiety-producing times during which women cannot predict what their bodies will do, and during which they inhabit a difficult status in between expectant mother and grieving miscarriage sufferer. I found out 3 weeks ago I had a blighted ovum. I was 8 weeks along. The baby stopped developing after implantation at about 5 weeks the doctor said. She told me I would probably naturally miscarry soon but we could discuss options if I didn't. Its been 3 weeks since that appointment and nothing has happened. I am scheduled for another sonogram next week but I was wondering if this is normal. Has anyone else waited this long? Am I in danger by waiting so long to naturally miscarry? This waiting is terrible and I feel like I need something absolute to happen so I can progress with my grieving. (MS 3/1/14) Part of what is interesting about this quotation is it shows vividly how from the doctor's point of view, there is simply no relevant involvement until the wait is over. Thus this is medical dead time, which adds to its emotional complication for the waiting woman. Tmill12 gets a host of replies from others who talk about how the waiting period has been especially painful, and a recurring theme is how women cannot “start the grieving process” until the wait is over. Still confused and disbelieving. recognize that its almost 11 weeks later and havent had a period so concerned about my future considering my age. i didnt want anyone there because this felt so personal, i did not feel anyone could understand or feel the pain i was feeling, […]. . i bring it up to him in a certain but undetailed way and hes supportive and thankfully not forcing but now, 11 weeks later is the only time i've “talked about it”… i still cant bring myself to get rid of the few baby items or take my name off registries or even remove myself from baby sites. (MS 8/12/13) This quotation picks up on several narrative strands in the author's life. We see here the complexity of the relationship between her miscarriage narrative, her lost but expected pregnancy narrative, her medical narrative, and her broader life narrative. These narratives would typically find their homes and uptake in different spaces: the clinic, the home, and the social world. One interesting feature of the passage is its exploration of the tensions between these threads, rather than their forced integration. This writer makes vivid her difficulty in making sense out of all of these threads simultaneously while going through something that is so deeply framed as inarticulable and private. Women who post to the miscarriage boards may be out of place in the larger pregnancy community of BabyCenter.com, and many express feeling out of step with family and friends. But once they post they quickly find themselves in a community of others who have been through or are going through the similar experiences—or at least, a community of others who are quick to affirm that they “feel the same way” or “went through the same thing.” Whether or not their experiences are as similar as they make them out to be, this ritual affirmation of a shared experience clearly plays a key role in enabling women to take themselves as having a comprehensible story. At the same time, these stories and self-presentations need not be unitary. In the introduction, we pointed out that one of the powers of the Internet is that it allows for multiple identity constructions and self-presentations. We see this vividly on BabyCenter.com, where many women participate in multiple discussion boards simultaneously (and may of course also maintain Facebook accounts, blogs, and other sorts of online presence). The different character of each community will likely inflect their self-presentation in each. The spaces offered by the discussion boards can be repositories of historical group knowledge. Some contributors check in with the miscarriage boards regularly, creating a community that can respond to members' new crises and developments with an ongoing, shared set of experiences. ImAjay is a contributor who reports on multiple boards in December 2013 that she will have to undergo a surgery that will endanger her pregnancy. When ImAjay posts “I'm back” and reports that she has indeed miscarried, it's clear that she has been on the miscarriage boards in the past (MSIL 1/8/14). One contributor responds, “I'm so sorry. I've read some of your stories before… you've been through a lot. Hugs and praying for your comfort” (MSIL 1/8/14). Mylil1rox, who comments on ImAjay's story, uses a signature line that reads “Mother of 7: 1 living DS10 born 6/10, 1 DS born still at 37 weeks on 12/7/2011, 4 M/Cs and 1 in the oven” (MSIL 12/20/13). The presence of contributors like these who have miscarried and then returned, sometimes even during a viable pregnancy, suggests that these spaces serve as fixed communities and maybe as safe havens in case they are needed when the narrative takes a certain turn. The group discussions thus serve as places to develop a collective interpretation of the experience of miscarriage and of personal identity and community in the wake of miscarriage. The discussions on BabyCenter.com come with boundaries and limitations, in part because the technology allows for immediate conversation, and in part because they are dedicated to predetermined, focused topics. But they also allow for varying and at times flexible self-representations. These representations can develop across multiple spaces and accrue meaning through what might be brief or extended periods of time. In the midst of this messy complexity, miscarriage narratives are articulated and given social recognition through this emerging common space. The technological syntax of Facebook allows for very different kinds of communication and constructions than we saw on discussion boards. Users can build a self-presentation over time by adding to their wall, and anyone who clicks on a user's name will be able to see the entire history. Facebook easily supports the addition of photos, audio files, videos, links to other sites, and other sorts of images in various modalities. Individual updates allow for comments, responses, “likes” and more. Facebook, unlike discussion boards, also easily allows the possibility of retrospectively revising and eliminating posts and comments. This allows users to control, revise, and fine-tune the self-presentational text they create to a much greater degree than on discussion boards. All this makes the overall text created by any one user into a multidimensional, nested, interactive construction—one that is governed but not entirely controlled by its author. “Justice for Mason” is a Facebook page hosted by Terra, a teenage girl who delivered a stillborn baby boy on April 22, 2013.11 As of December 30, 2013, the site had 4,084 followers, dozens of posts, and hundreds of comments. Terra was deeply upset not only by the loss of the baby, but by her treatment in the hospital, when a nurse flushed away the fetal remains without her consent. Her page began, nominally, as an effort to “to raise awareness for the mistake this Hospital made,” but over time it morphed into a memorial page, and a place for Terra to construct an identity for herself as a mother and for her lost baby as a child with a specific identity.12 Sitting in the horrible hospital for abdominal pain, a nurse asks if I have children, i explain I lost Mason to stillbirth and she says well then you aren't a mother you have no kids! Ugh!!! Then they bring me for an ultrasound and put me in the room where Mason lost his heartbeat!!!!! So done I never want to come back. (7/13/13) Unlike a discussion board, Facebook offers Terra a medium in which she can build a multimedia identity and a narrative for herself and for her unborn child that can be absorbed synchronically or diachronically. Furthermore, we see here again the primary role that time and temporal markers play in structuring the presentation of her experience during and after her loss. She marks her baby's original due date, anniversaries of his passing, and so forth. The narrative she creates is structured by these dates. For example, much of the page was dominated for many weeks by posts leading up to a balloon release she had planned for his due date (August 26, 2013).