Shanna Cameron, Author
Molly Kessler, Editor
While RHM has always been concerned with understanding the unique lived experiences of patients, the current social injustices occurring throughout the world demonstrate that it’s more important than ever to utilize inter-, multi-, and transdisciplinary approaches in order to build theories directly from patients’ lived experience. While there are many different methodological approaches to lived experience, recent works have called for increased attention to embodiment as a theoretical lens that can describe the potential, generative meaning of physical bodies and their rich sensorial experiences in order to “complicate the ways bodies are understood to work and perform as rhetorical agents, and to intervene in the ways bodies both inscribe and are inscribed upon” (Johnson et al., 2015, p. 42). For example, Frost and Eble (2020) note how interdisciplinary approaches to embodiment can combat mind-body dualisms present in biomedical contexts, which “pathologize bodies already at risk” by “depend[ing] on notions of knowledge incorrectly understood as universal, objective, and disembodied—failing to account for embodied knowledge so important in these contexts for specific bodies” (p. 4). Therefore, embodiment can also be used as a lens to help build theories that intervene in conditions that have been marginalized and stigmatized, as demonstrated by Kessler (2020) and Molloy (2015), among others.
A move toward embodiment may also signal a necessary move away from textual approaches; however, this move becomes complicated by our increasingly digital world. While the Internet was already a crucial aspect of everyday life before the pandemic, we now complete most of daily activities—working, learning, researching, socializing, exercising, and even attending health appointments—online. Thus, it becomes imperative for RHM researchers to not only consider best practices for in-person approaches for studying embodiment, but also to interrogate how we can better research and understand embodied approaches in online spaces. Two recent articles published in the RHM journal—Johnson et al.’s (2020) “Sticky Baby Dust and Emoji” and Jarvis’s (2021) “Invitational Rhetoric in Epistemic Practice”—take on this important issue. These articles both center on the embodied experiences of people living with infertility, and they both emphasize the importance of digital contexts in order to help reduce feelings of stigma, isolation, and anxiety in this community. However, the authors use very different methodological approaches in the articles, which is generative for productive conversations in the field about the different ways we can study embodiment online.
Infertility and the Internet
The recent articles by Johnson et al., and Jarvis join a growing conversation within RHM that examines both the discourse surrounding and embodied experiences within infertility. For example, in their recent chapter in Interrogating Gendered Pathologies, Novotny and Horn-Walker (2020) note how “narratives of infertility continue to echo pathological assumptions that an infertile body is an unhealthy, diseased, incomplete body,” which results in an “embodied silence [that] lurks in the body when it is infertile” (p. 44). This silence is attached to feelings of shame, isolation, and failed identity that can occur when those who want to have children find they are unable to do so. Biomedicine and the increasing proliferation of technologies designed to “fix” or “repair” infertility may only add to feelings of isolation and shame, as they often tout successful outcomes while minimizing the number of families who are never able to conceive and the amount of money that is often spent in the process of treatments. Additionally, families experiencing infertility may find that friends, family, and coworkers, while often attempting to help, may also present emotionally damaging statements; for example, women struggling with infertility are often told they can have a baby if they simply relax, eat healthier, or wait until the time is right. This discourse can lead women to isolate themselves even further from their in-person support networks.
Both Johnson et al. (2020) and Jarvis (2021) demonstrate the importance of the embodied experiences of shame and isolation to the online infertility communities they studied. Both authors also found that digital spaces in particular can provide an alternative, preferred space for those experiencing stigma due to an infertility diagnosis. In digital spaces, participants can remain anonymous or create alternate identities, and they can also decide to disengage or leave the group whenever they choose (which may be more difficult in face-to-face settings). Additionally, members are surrounded by others who’ve had similar experiences and emotions, so they’re less likely to be exposed to the same damaging narratives they may experience in the medical setting. Together, the articles highlight how care, ethics, emotion, and social support are all key aspects for RHM researchers to consider when studying the lived experiences of infertility. Johnson, Quinlan, and Pope poignantly show how participation in online spaces “will never cure or heal infertility;” however, the emotional and social support provided in these spaces perform crucial rhetorical work that helps participants recover from feelings of shame and increase their sense of self-worth.
Following Novotny and Horn-Walker (2020), whose research recently illustrated the importance of art as a site for both fostering public awareness and support and for studying embodying experiences with infertility, Johnson et al.’s study is centered on images, captions, and emojis on Instagram. Due to the popularity of hashtags surrounding infertility on this platform, such as #ivfjourney, #ivf, and #ttc, the authors gathered and analyzed 200 images, along with captions and comments. Noting the importance of emojis within this community, the authors then randomly selected 25 posts with comments in order to complete a deep reading of the 318 emoji present in the data set. In order to analyze the importance of emojis to the community, Johnson, Quinlan, and Pope used a qualitative, directed content analysis guided by health and social psychologist Bert Uchino’s (2004) four components of social support: emotional support, informational support, tangible support, and belonging.
The authors found that emojis function as important rhetorical tools that facilitate social support in digital spaces by helping users “enrich their messages, limit misinterpretation, signify an emotional state, or to signal complexities such as irony or sarcasm in the absence of verbal tone” (p. 325). Therefore, they call on researchers to consider the ways emojis can function similarly to nonverbal communication in face-to-face settings and also present three key findings related to social support on Instagram. For example, the authors highlight the importance of emotional support, belonging, and informational support within the community studied. Emotional support and belonging help members build camaraderie and empathy and increase feelings of self-worth, while informational support helps members combine their lived experiences alongside medical information in order to provide nuanced recommendations. However, one of the most compelling findings of the article was the importance of tangible support within infertility communities, due to the high out-of-pocket costs involved with treatment. Tangible support, shown by members offering to mail unused medications and injection pens to other members without insurance, highlights the importance of material factors to decision making and can lead to future productive studies in RHM to increase awareness of the experiences of members who may be marginalized due to material resources.
Jarvis’s (2021) Invitational Rhetoric in Epistemic Practice: Invitational Knowledge in Infertility Support Groups
Similar to Johnson et al. (2020), Jarvis highlights the importance of social and emotional support present within online infertility communities. However, Jarvis begins her study from a postmodern feminist perspective to argue that because infertility has become a medicalized disease, masculine epistemologies are often foregrounded in medical contexts to separate women’s lived experiences from treatment decisions. In response, Jarvis instead examines the everyday knowledge present in two public infertility support groups on Reddit—r/Infertility and r/StillTrying—to search for the alternative and lived knowledge presented in these spaces. Jarvis uses online ethnographic methods to immerse herself in the community and collects and analyzes narratives that engage in knowledge-sharing activities in order to develop a theory of invitational knowledge, which “does not fully reject the objectivist, expert opinions of medicalization, [but] it nonetheless makes room for the partial, fragmented knowledge that develops through the experience of living with an illness” (p. 12).
Grounded in invitational rhetoric (Foss & Griffin, 1995), Jarvis develops five key characteristics of invitational knowledge present within the community studied: rhetor agency, emotional knowledge, transformative discourse, shared knowledge, and asking questions instead of passing judgement. Jarvis demonstrates how individual rhetor agency, which places “inherent value of the knowledge that an individual develops through their own, lived experiences with a medical condition” (pp. 14–15), can provide “emotional relief” for patients with stigmatized illness, as it may help them realize the ways their life holds meaning outside their diagnosis. Emotional knowledge describes how “emotions are embedded within every aspect of the medical process” (p. 18); emotions are integral to building and sharing knowledge, as well as creating connections with others. By integrating emotions such as vulnerability, anger, sadness, and hope into their experiences of infertility, participants are able to build their emotional knowledge alongside medical knowledge, which has the potential to add to their decision-making abilities. This generates transformative discourse, where “participants of these communities fully integrate hegemonic rhetoric of the medical establishment” with their own emotions and experiences to create a shared language that is more than scientific and able to transform larger cultural discourses of infertility that may be disempowering (p. 21).
Importantly, a feminist perspective helps Jarvis highlight the value of multiplicity to collective advocacy work in online communities. For example, the fourth characteristic, shared knowledge, emphasizes the engaged and relational aspects of knowledge in order to demonstrate how we are all situated differently in time, space, and within our own bodies—which is crucial because it can help patients think through the different and complicated ways their bodies may be affected by infertility. The final characteristic, asking questions instead of passing judgement, builds on this aspect of multiplicity by demonstrating how individuals often present information as a question rather than as an argument. By presenting questions rather than giving unsolicited advice, community members model the process of considering information within the context of their own lives in order to make the best decisions for their bodies.
Implications for Research in RHM
As a person who has struggled with infertility for years, I’m excited about the different ways the authors of these pieces have extended the field’s knowledge about the lived experiences of infertility in online communities. Taken together, the articles highlight the importance of research into online communities and the ways individuals come together on various digital platforms in order to spread awareness and decrease feelings of isolation that may occur after a diagnosis of a stigmatized illness. Additionally, both articles highlight the value of embodiment to the study of lived experiences, particularly in the depth and complexity of the emotional experiences of infertility. However, as the studies focused on different online platforms and utilized different methodological perspectives, each article also highlights different aspects of the infertility experience that can lead to productive future studies. For example, Johnson et al. were able to show the relevance of tangible support to the decision-making practices of patients in infertility communities, based on Uchino’s (2004) four components of social support. Jarvis, utilizing a postmodern feminist perspective, highlighted the value of multiplicity to shared knowledge, which may better account for the ways that different bodies are situated in time and space, prioritizing the complexity of decision-making for different bodies.
As both articles present compelling insights for future studies in digital research in online communities, I end here with a few highlights and questions that the Johnson and Jarvis articles encourage us to continue thinking through. Specifically, I pose these questions to energize and guide future research into lived experience in digital spaces:
- As rhetoricians of health and medicine, how can and should we navigate lived experiences present within texts online? Or as McKee and Porter (2010) questioned, “When is text online text, and when is it the communications of living persons?” (p. 152). For example, Johnson et al. and Jarvis both demonstrate how participants in online infertility communities may prefer anonymity due to stigma in face-to-face encounters. Therefore, as a field, how can we continue to refine our own best practices for research as we enter online spaces, introduce ourselves, and build relationships with community members? Additionally, as both authors highlight the importance of emotions in online communities, it seems crucial to continue considering how we can best account for our own embodied emotions and positionality as researchers as we engage in this work.
- How can we continue to refine our approaches to ethically research lived experience in relation to publication? As ethical concerns continue to be a defining feature of our field’s conversations (Baldwinson, 2018; Lynch, 2020), it is vital that we continue to question how we ethically present community members during the publication of findings. While our field has provided insights that can help guide researchers in these choices (De Hertogh, 2018; Opel, 2018), Jarvis and Johnson et al. provide additional examples of their attempts to research ethically in online spaces. For example, while both platforms were open and available to the public, Johnson et al. chose to blur images and identifying information of participants; additionally, Jarvis rewrote the narratives used as examples within her article, in order to protect the original authors from added exposure. These examples demonstrate the many different ways we can continue to refine and add to our own best practices in publishing research on stigmatized illnesses.
- How can we continue to productively mix methodologies in future RHM studies to highlight the importance of material factors, while also increasing our focus on multiplicity and social justice concerns? As these articles show, materiality and advocacy are both important to the lived experiences of infertility. As “methodological mutability” has always been a defining characteristic of RHM work (Meloncon & Scott, 2018), what are the different ways our field can continue to highlight the importance of the material while also amplifying our attention to advocacy and social justice concerns, particularly in light of rampant health inequities occurring throughout the world?
Ultimately, Jarvis (2021) and Johnson et al. (2020) have provided us with timely and important articles that can help us continue to think through and build on the many ways we approach lived experiences in the field, and I look forward to seeing the different ways their studies will impact future research within RHM.