The Language of Ambiguous Grief

This is the Sunday edition of Culture Study — the newsletter from Anne Helen Petersen, which you can read about here. If you like it and want more like it in your inbox, consider subscribing.

I realized today was Mental Health Awareness Day when I opened Instagram and saw a post from a Peloton instructor. As you’ll see, this is particularly appropriate given today’s newsletter, featuring the work of Samira Rajabi, a media studies professor at the University of Colorado. I’ve been eager to highlight her research on trauma, grieving in online spaces, and her current research on Peloton’s place within the pandemic and beyond. It just happens that the publication aligns with this day, which like so many “awareness” days, can often feel hokey and arbitrary but are ultimately best understood as an opportunity: in this case, to make trauma and grief and suffering visible and speakable.

I’m so grateful for Samira’s work, particularly her articulation of “ambiguous grief,” which has helped me organize and understand some of my grasping confusion over the last 20 months. I hope it’s useful to you, too — and I hope you’ll feel comfortable sharing some of your own ambiguous loss in the comments. You can follow Samira on Twitter and buy her excellent book, All My Friends Live in the Computer: Trauma, Tactical Media, and Meaning here.

Content Warning: Pregnancy Loss

I find myself deeply compelled by the way you describe and define trauma in your work. Can you talk a bit more about your approach, and what’s been lost in previous understandings more tied to medicalization? 

I came to my approach toward trauma from a place of my own suffering. I was pretty sick for a long while and one of the things I found myself resisting in my own experiences with doctors and therapists was this relentless push to a fix, which felt coded as a return to a normal, mostly able body. Even when professionals didn’t use that language explicitly, there was this sense that we were always building momentum to some hypothetical, mythical space where the circumstances of my trauma and the effects of it would just be fixed. This didn’t track with what I was seeing around me and feeling in my body, so I tried to dig in.

I was diagnosed with a rare, benign brain tumor in graduate school and I needed ten craniotomies to manage it. Some of the effects of my tumor simply could not be fixed, it left permanent side effects, but more relevant, so many of my symptoms sat firmly outside of what I was perceiving as medical problems that had clean treatments. I did need medical treatment and I wanted that, I just also found that the medicalization of trauma meant that the treatment I was being offered in the barrage of tests and surgeries was not capacious enough to help me manage the ways my experience of trauma suddenly disabled and thus marginalized my body.

I really believe that when bodies are traumatized they are othered, and depending on your other embodied identity markers, this marginalization requires more than just medical intervention, it requires social intervention as well. It was in working with a trauma therapist myself and reading about trauma that I came to a definition of trauma, building from folks like Ronnie Janoff-Bulman and Didier Fassin. 

Janoff-Bulman talks about trauma in terms of what she calls “assumptive worlds” (here is the article) which are these spaces of strongly held beliefs about the self, the world, the day to day. These worlds are built socially and so our assumptions are confirmed by our experiences out in the world. Then, if something happens, a traumatic rupture, or even a series of smaller traumatic events — like what we’ve seen with the relentless nature of COVID, climate change, global geopolitical violence — we start to see people have to confront what Janoff-Bulman calls “anomalous data.” Our assumptions about the world just don’t track anymore. This then causes anxiety and a sense of helplessness and a whole host of other embodied experiences that make life harder.

These embodied experiences then exist in a world that Didier Fassin and Richard Rechtman describe in their book The Empire of Trauma: a world where it becomes natural for people to articulate trauma, and that the social response — which is often therapy — is thought to be a signal of progress. Within this sort of universalizing understanding of trauma, we can’t really address trauma without really conforming to the social systems in which we’re embedded. Put differently, no matter who you are, you understand your trauma through the social systems that help you understand who you are. 

To me, medical understandings of trauma is just one part of the traumatized person. Recently I listened to an episode of the Moth in which a woman named Jennifer talks about her contentious relationship with her body. But by the end of the story, which is sort of a coming to terms with her own body, she shifts from “I have a body” to “I am a body.” The medical definitions of trauma are like the first category: I have a body and it is part of my job in taking care of it to control it, fix it, normalize it, and return it to status quo definitions of it and boundaries around it. The more social definition of trauma, the one that demedicalizes it and situates it alongside other experiences that are inflected by power, politics, pop culture, social structures — that version of trauma is like the realization that, I am a body. That understanding makes room for more kinds of suffering and more possibilities for coping, for hope, and for progress outside of the assumed medical, therapeutic progress. 

I’ve found myself obsessed with the idea of “ambiguous grief” over the course of the pandemic — and while the pandemic has introduced this form of grief to millions of people, it’s not a new phenomenon, not at all. Can you talk more about what prompts ambiguous grief, how people do or do not process it, and what makes us resistant to understanding it as grief, or a symptom of suffering and trauma? 

I found this concept when I was working on an academic project about pregnancy loss, celebrity, race and gender in the months after both Chrissy Teigen and Meghan Markle shared very different testimonies of their losses. I found it deeply striking that there might be a category of loss for a kind of loss that feels so intangible and yet so real. Given all my research on trauma, I had been looking for a way to conceptualize the unnamable, ineffable trauma people were experiencing, the sort that extended beyond what the language of trauma offered. And I think ambiguous grief gives us that language.

Ambiguous loss theory conceives of a loss that is both unclear yet traumatic: it can be physically absent but psychologically present; alternatively, it can be psychologically absent while physically present (think here, for example, of someone suffering from dementia). Miscarriage fits this type of loss because there is not the physical presence of a child, there is no body to be buried, but there is a palpable psychological loss. Lots of places — including the hospital where I had a D&C after a miscarriage — attempt to add a physical dimension to this loss to make it more concrete by offering things like cremation of fetal remains and, in my case, an offer to sprinkle those ashes on a memorial bench in the hospital parking lot. Despite this attempt to make concrete this type of loss, it really remains ambiguous: uncertain, and hard to define. 

And that’s what so many people, even those who were lucky enough to avoid the embodied ravages of COVID, have been feeling. Things have been lost — so many things have been lost. But how the hell do you grieve a loss that you cannot even pinpoint? How can you lose something you never had? I felt that way with my miscarriage, but I also weirdly felt that way with the really big keynote I was supposed to give at a huge, global event. I also felt that way about the shared time I had hoped to spend on a girls trip with my sister who is alive and well and living in Boston. I haven’t lost my sister, I haven’t lost my ability to speak in the future, but I lost something. I think we all also have been grieving the loss of our day to day, of our assumptive worlds to use the language of trauma. We thought our worlds would look a certain way from now until forever and when the pandemic ruptured that, that rupture was significant. That rupture is traumatic. 

And yet, it’s hard to articulate it that way — for a whole host of reasons. For those who had the resources and privilege to stay relatively safe, housed, fed, and working during the pandemic, it is difficult to lay claim to trauma when, rightfully, we recognize that so many people did not have that ability to be shielded from the very real impacts of this disease, including the loss of human life. It’s important to name and be really clear that acknowledging the ambiguous grief and loss experienced in the space of the pandemic is not something we do instead of recognizing the real loss of life, nor is it meant to be in comparison to that loss. Yet this more mundane kind of suffering has a lot to teach us about how we’ve spent decades building assumptive worlds — and had those worlds confirmed to us by media and pop culture and all sorts of social systems — that were in fact, really really fragile, and perhaps in need of remaking. Even as these worlds break apart, we cling to them and the social systems that made us think that routines like going to work and coming home were natural.

We conceive of loss in terms of life and death but beyond that very clear delineation of loss, there is a sense that what is valued is only that that can be concretely valued in a transactional system. Like my husband always jokes about the nature of the world, “if it doesn’t make dollars, it doesn’t make sense.” Socially and culturally, so much of what is considered worth our time is inflected by capitalism and neoliberalism. We want to be able to measure grief, to place it in its category but when we’re grieving time we didn’t get to spend, family we didn’t get to visit, or experiences we didn’t get to have, it’s hard to evaluate that in terms that are socially recognizable.

I also think there’s a bit of an anxiety that in naming ambiguous grief, and in grieving the various day to day losses, that we might expose ourselves as not grateful enough and as not fitting within the normative boundaries that have been so cleanly scripted for us. We just don’t have a script for this grief, and many people feel like they're not entitled to it. But again, this loss is not meant to stand in contrast to other, more concrete and tragic losses that are so full of injustice and so marked by racism, class and power, because those losses matter and are deeply worthy of our social, cultural and political attention.  Rather, I think recognizing ambiguous grief as a real grief is just a means to be able to say “I don’t know why these changes and ruptures feel so painful, but they do and it's okay to feel that.”

I think I like studying trauma and grief not because of any quality of trauma or grief, but because where traumatic ruptures happen — when the constructs of our worlds get broken — it opens up space to remake those constructs. It’s hopeful. But before we can get to that space of hope, we have to get a space where we acknowledge the grief. 

You write that “suffering demands to be seen.” How did this demand manifest historically, and how, in the spaces that you study in your book, do we see it manifesting now? I’ve been particularly struck by the way people shared and/or responded to Chrissy Tiegen’s miscarriage last year, but I also loved the chapter in your book where you focus on the online spaces that provided Iranians living in the US a way to manifest and collectively process what it meant to be a “banned” body. What’s promising and expansive about these spaces, and what’s limiting?

There are very real benefits and pitfalls to these spaces where people go to offer their testimony of suffering. Nick Couldry uses the term ‘presencing’ in his book Media, Society, World to talk about how we go into digital or media spaces to manage our presence over time. It’s a way we cultivate a sense of wider purpose through a public presence. And because of the way suffering and trauma marginalize people, this act of making yourself more visible is even more important. Put really plainly, society doesn’t like to see suffering beyond seeing it in clean narratives that fit into pop culture. In American culture in particular, there is a strong preference for triumphant stories. So we can conceive of suffering if it can be managed and overcome, but rarely do we know what to do with a story of chronic pain and suffering and how relentlessly it reminds a person that they no longer fit into the so-called “normal” world. To me, it becomes even more important for those people to be seen.

We can see this demand to be seen in large global events that are easily recognizable as traumatic. This is most often studied in relation to the Holocaust but we can see it everywhere. Most recently in the US, the anniversary of the 9/11 demonstrated a social and cultural need to narrativize the national trauma: to mark it off as having had meaning, to re-make the world and what it means in lieu of that trauma, and to situate that suffering within the current cultural discourse. This work of remaking meaning becomes really personal in the realm of digital media. You see these demands to be seen take on more nuance — especially as these spaces allow for more types of voices to be heard.

There is a real, tangible benefit to sharing trauma this way, even when loosely formed communities pop up and disappear fairly quickly. But there are real risks in terms of privacy and safety, and users may not recognize the consequences of these risks until much later. As with so much of our digital interaction, the risks are harder to pinpoint than the rewards. This is by design, of course: the mechanisms that keep us engaged are often obscured from view. It’s really important for users to consider what they post and where, to weigh the benefits and drawbacks of that particular kind of engagement. But I also want to say that for users in the midst of their suffering, that calculation of risk and reward might be very different from someone who isn’t dealing with acute suffering. 

I want to hear all about your Peloton research — I know you’re still in the middle of it, but what prompted you to look specifically at Peloton, what initial findings are exactly what you thought you’d find and what surprise you, and what do you think a lot of people get wrong about what people are seeking (and finding) in a “bike that goes nowhere”??

WHERE DO I EVEN BEGIN! As a trauma and media researcher I am constantly looking for digital spaces where people cope. I’m also super interested in how social class, race, gender, ability, and our performances of all those intersections enable us to cope or totally prevent us from having authentic engagement. I had thought, after using the Peloton app for many years, that getting the real Peloton would just offer a sort of faux sense of belonging to a community. But then my partner surprised me with a bike during the pandemic (we’re on the three year payment plan for it) and I really leaned into the immersive experience of it all. I started seeing myself coping with really real suffering on the bike. I wanted to understand what that meant for my trauma and suffering, but also what that meant in terms of coping, health, class and celebrity. 

I started following anyone and everyone who was posting about Peloton, from instructors to average users, and I started seeing something really familiar to me: the same language I’d seen in my research about trauma. People were articulating a sense of belonging, a (disparate) sense of community, a sense of self-actualization and well-being that seemed to come from sharing in an embodied experience with others. Most centrally, people were using this space — both on and off the bike — to cultivate a space to heal, even when they couldn’t articulate what they were healing from. 

Something strange happened during the pandemic. I haven’t formally researched it, but I observed it in multiple places on social media, from Instagram to Reddit. People were dealing with so many compounding levels of trauma that they found it more difficult to pinpoint what they were sad about. There was no clear moment of rupture, no clear tracing of a traumatic event. The trauma was like a low level grumble, always present and palpable yet totally avoidable by sinking into the day to day performance of work, home life, culture.

This sense was even more noticeable in some of the illness communities I follow and study. People whose lives were already marked by illness and the constant sense of suffering that brings were inundated with a trauma that was hard to navigate, in part because there wasn’t just one thing to focus on healing. Given how steeped we are in a culture of fixing, this was a fertile space for a platform like Peloton to take root.

Peloton existed before the pandemic. But you can see how it became really salient for people during that time: it offered the the ability to safely share space without sharing space, to fully steep your body in a practice that was about a sort of resilience that is always in progress, and to do so in a way that then felt shared, and was not about becoming someone else or something else.

This notion is best embodied in something one of the (most intense) instructors, Jess Sims, often says: “You can be a masterpiece and a work in progress at the same time.” This type of language enables suffering bodies to release themselves from the idea that they must be fixed, even while working towards self-improvement, healing, coping or physical well-being. This is really powerful! So I knew, when I started looking at Peloton, that there was a larger cultural understanding we could glean from the way a branded community has provided authentic spaces for healing amongst its users.

That said, I think it’s also crucial to look at the way this space doesn’t exist for everybody. Despite the various price levels for digital-only content, the Peloton brand gate keeps its users based on social class. I have to ask — and will be doing interviews to discover — what it means to be a part of a community that you pay to be a part of. This is not a space that is available to anyone and everyone, and that changes what and how it can then operate on social media, and limits who can aspire to the type of healing it offers, which is a a type of healing for which I haven’t perfectly pinpointed language. 

For the research I’m doing now, I’m working to understand how the Peloton platform and its accordant social media production, apparel products, and community engagement events facilitate a sense of coping for its users during trauma. I am thinking a lot about how there is a clear absence of diet culture language. (In fact, I first learned of the magic of mega stuffed Oreos from Cody Rigsby!) I’m also considering how that absence is so deliberately produced — or, maybe more aptly, it is so deliberately rejected by instructors in their affective engagement and the rhetoric they use. The leaderboard is “competition to uplift, never to destroy” (Jess Sims) and you’ve already “survived 100% of your worst days” (Robin) and “you woke up today” (also Robin) so you’re already the hero of your own story. Users are invited into their power: as Kendall says, “they can knock you down but they can never knock you out,” because as Robin tells us, “I am not here to be police, I’m here to become powerful.” This language is almost tailor made for bodies suffering from trauma.

Thomas Egnew writes about the way “suffering arises from the meaning ascribed to events, it engenders a crisis of meaning.” In order to heal from that crisis of meaning (beyond, of course, addressing the more concrete components of trauma, like treating illness, staying safe in the pandemic, addressing acute needs) suffering people need to be heard. As Egnew puts it, “the patient's suffering must be heard and accepted, as the denial of the patient's story of suffering and sacrifice is a denial of the patient's identity as a sufferer.” The space of suffering is that space in between the breakdown of one meaning-making structure before a new meaning structure has been constructed. I think I am bearing witness to people making new structures through Peloton: a space that allows them to work toward healing, self-actualization, betterment, health, without any judgement for how unfathomable the present moment seems. 

Of course this space is not uncomplicated! There are important questions to be asked about how leadership board ranking, distinctions between digital and non-digital users, and the way challenges and competitions enable users to leave this space of simultaneous acceptance and growth and enter a space that ultimately leads to an unhealthy relationship to the app, equipment or brand overall. I’ll be interested to hear from users in interviews later this year on how they strike a balance between yearning for a shout out, for example, and being present in a space where you are meant to, as Matty says, “inhale the good shit, exhale the bad shit.”

Beyond that, it’s crucial to think about the Peloton user base. What is the role of ability and self-image, for example, in a community that is built around physical exercise that in many ways assumes a normative body? What does it mean to espouse notions of bodily belonging while also creating an instructor base that fits really comfortably into beauty standards perpetuated and created by influencer culture? How do the captions, posts and exchanges between real users and instructors simultaneously break down these beauty standards and hold them up? And what do we do about that? Do we need to do anything about that?

Peloton positions itself as both apolitical, yet performatively falls into a left-leaning, pro-diversity space and makes a point in its programming, social media and apparel to celebrate everything from Women’s History Month and Breast Cancer Awareness Month to Latin History Month and Pride.  I’m hoping to dig into how users respond to this notion of having your culture seen and honored…but also employed as a marketing catalyst. In my previous research, I’ve found that commodification does not necessarily empty out or preclude authentic engagement, so I’m anticipating finding something similar here. Peloton’s call-outs to equity may enable important spaces for belonging and culture, even while users recognize the larger market considerations that may underlie some of those decisions.

All my research up until this point has looked for and then examined spaces of meaning making that is forced after trauma. It makes sense to find these spaces in social media, where anyone can post about anything. But to find them in Peloton spaces that are both curated and produced — while still inviting in the uncertainty that live engagement fosters — is really compelling.

Where are you finding space for ambiguous grief and trauma these days? And if  people are really seeking spaces of their own — do you have suggestions for how they can start looking? 

I have spent the last decade or so researching spaces for people to cope online and lately I find myself resisting so many of these spaces. I think part of this resistance stems from a sense of fatigue with the near constant articulation and rearticulation of trauma that (some) of these spaces seem to demand (here I’m thinking of dropping into a health care chat and identifying yourself as patient, caregiver, survivor, etc).

With the kind of low hum of trauma that I’ve felt in the pandemic I have less of a desire to articulate my belonging to an in-group, even while recognizing that articulation of belonging might help me feel seen. That said, I still find a lot of space for ambiguous grief on Twitter. Though I am personally using some of the more concrete communities less and less, I have found that — trolls aside — there are these pockets of empathy that circulate around those who dare to articulate or narrate their suffering. It’s a really unique space for that. I also think a lot of folks are using Reddit to articulate trauma, and to do so outside of the confines of the word limits and the purported need to presence yourself in spaces like Twitter. Discord and Group Me have also been interesting spaces for folks to express grief and trauma as well, though the nature of those applications requires a sort of insider access that the every day suffering person might not have. 

For people looking for online communities to connect with, I think it’s actually less about the platform and more about the community’s needs as well as the individual’s needs. There are so so so many Facebook groups that respond to everything from major illness to issues like food insecurity. I would say look first in the space you are most comfortable in, then start there. For me, when I was dealing with pregnancy loss, I didn’t have language I could put on that loss right away, so I perused pregnancy loss hashtags on Instagram— and then, when I was hoping to find more interaction and connection I looked for those same hashtags and key words on Twitter, Reddit and even sometimes in branded spaces like chat spaces created by apps.

So much of how we grieve, even in this hypermediated world, is so personal. Lately, I’ve found channels and outlets for my grief in Peloton, even though no one knows my suffering nor can they see it or even validate it. I have also found comfort from grief in the comments pages on this newsletter. Sometimes the cultivation of community comes not from the explicit articulation of the grief but in the sharing of space with people who you feel or think could possibly relate to you in meaningful ways if you ever dared to share your testimony with them. 

You can follow Samira on Twitter and buy her book here. Please feel free to comment below — and if you’re a subscriber, I also recommend spending some time with this excellent Friday thread on Grieving from a few months back.

You can find past interviews in the archives, including ones on what got left out of the LuLaRich documentary, what white people are freaking out about right now, the effects of de facto preschool segregation, on tshuvah, and an incredible look at Fixer Upper through the lenses of religious studies and postcolonialism. If you have suggestions for future interview subjects, just email me.

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