Women, healing, and community: Cyberfeminist activity on Reddit

Lived Experiences

Feminist ideology and, in return, feminist research practices, according to Sharlene Nagy Hess-Biber (2013), work to “eliminate boundaries that privilege dominant forms of knowledge building, boundaries that mark who can be a knower and what can be known” (p. 3). Further, she wrote, “feminists have forged new epistemologies of knowledge by incorporating women’s lived experiences, emotions and feelings into the knowledge-building process” (p. 10). Seeking to understand women’s experiences and acknowledging the power these experiences hold in understanding differences is critical when thinking about how women interact and communicate in the world. These real-life experiences are online, including websites and social media platforms. Examining interactions and lived experiences as women move online allows for a better understanding of how they are working to shape digital cultures and spaces in productive ways.

Women are bringing their lived experiences to online spaces such as email, discussion boards, Facebook, and reddit. They are shaping how these spaces may be used for different reasons. Women are using digital and online spaces in meaningful ways that can impact their own experiences and experiences of those outside the margins by addressing these interactions through personal and political reasons (Blair, Gajjala, & Tulley, 2009; Girard, 2002). Women use these online communication tools to carve out the space they need to accomplish tasks and are doing so in service of and connection to other women as well. These online experiences are just as important as offline activities they take part in, especially as these women are communicating and seeking out information for everyday matters that impact them in real life, such as health issues, online.

Oftentimes, technology provides a voice for women who may not have one in other structures in their lives, including work, education, and parenting, among others. Many researchers have focused on the role of technology in women’s lived experiences and identities online through the definition of cyberfeminism, a subset of feminism. Christine Tulley (2009) defined cyberfeminism as “a multilayered movement dedicated ... to thinking about gender, gender roles and their representation in the computer world'" (p. 110). Christa Downer, Morgan Gresham, Roxanne Kirkwood, & Sandi Reynolds (2009) in their analysis of pro-ana websites observed cyberfeminism as creating spaces to define and perform identities and share their voices (p. 89). Women’s representations and identities are brought to and composed on many social media applications such as Pinterest, Instagram, and reddit. But they often have to rely on the tools or functions of the applications to help them compose these identities. Radhika Gajjala and Yeon Ju Oh (2012) argued that women need to approach these spaces critically, writing “Cyberfeminism necessitates an awareness of how power plays out not only in different locations online but also in institutions that shape the layout and experience of cyberspace” (p. 1). In other words, the platforms decide where users post pictures and how many characters users can write with rules, pages, or pictures that may show up in their timeline based on algorithms more than actual preferences. When women go to social media or other websites for information or interaction, they should be aware that their experience is shaped by the application itself. However, the way they are establishing their identities or roles within those confines is due to the interface, tools, and conventions of those spaces. In most cases they use these spaces in ways designers have intended. But in some cyberfeminist activities, women are appropriating these spaces and conventions for their own means and using them the way they want.

Since a principle of cyberfeminism is the use of technology for empowerment (Gajjala & Mamidipudi, 1999), it is important to see how cyberfeminism and women taking control of spaces for their own means can work together. Katherine Deluca (2015) argued, “cyberfeminism may be occurring in spaces where we might not initially recognize it as such, including sites like Pinterest” (“Cyberfeminism and Digital Engagement,” para 1). I agree with this assessment and extend it to thinking about sites like reddit, where women are not the primary users. With the r/PCOS, they are tapping into a very specific aspect of their identities; cyberfeminism is a useful way to observe this identity work as it provides an account for the various experiences and ranges of purposes of women who interact in this space. As women are establishing themselves as important voices in cyberspace, it is important to understand what they are doing online to establish this. One area that women have been actively engaging in online is medical resources and health support. The next section will examine research focusing on women’s experiences with health and online health support communities and how they have used these informative spaces for their own means.

Online Health Support

There has been much research on women’s online medical resources and online discussion of health with issues and diseases that primarily affect women and how they use these resources for their own purposes. This too can shed light on the work women are doing online for their health on the r/PCOS.

One way women are using online resources is by educating themselves about larger issues and finding resources that may not be available to them in real life. Kim Hensley Owens (2009) examined the rhetorical strategies of birth plans and how some mothers found even further information after conducting online research for writing their own birth plans. She wrote:

In their efforts to write birth plans, women educate themselves about pregnancy and birth, learning about themselves as consumers, patients and possessors of unpredictable bodies. Just as women can consult myriad birth plan templates online as resources, they can also find advice, support groups, and information about problems such as miscarriage and stillbirth. (p. 269)

Through the resources they delve into online, women are able to take some control of their medical conditions. The variety of resources women find online can be critical to their decision making. As they search for information, they continue to find more information that can help them understand some of the greater nuances of their medical plight and can empower them to be bigger advocates for themselves. Another resource women are increasingly turning to online is online support groups that can afford women the opportunity to reach out to others for information. In exploring online infertility support communities, Angela Haas (2009) found these communities can provide some sense of relief for women who may feel disconnected to others, stating, “These communities remedy the sense of isolation ... and provide women a forum so that their stories may be heard” (p. 76). Women can find others with the same experiences, even when they may not be local, to share their understanding when it may be hard to share or they may not have someone close to share these feelings with. Online support communities can be a valuable resource for many. This is one reason social media sites such as reddit can be important to women looking for more information on illnesses online; they are able to learn from authentic experiences others have had.

Further research has shown that another benefit of women taking initiative to do their own medical research online and creating community is that it empowers women to better discuss their illness with their doctors and take agency over their medical care and help shape their medical experiences offline, specifically in terms of PCOS. In their respective dissertations, Kittie E. Grace (2010) and Marissa McKinley (2019) found that seeking support online helped women with PCOS have more democratic conversations with their doctors, becoming lay-experts in that they can refer to their medical and personal experience with the illness because they have previously discussed the illness with others who also have it. Grace (2010) wrote, “Instead of placing responsibility for an individual’s health within the hands of the doctors, the women of PCOS websites argued for self-efficacy to obtain optimal health because the doctors are fallible” (pp. 173–174). McKinley (2019) argued that the participatory nature of these sites gave women more agency in reclaiming and constructing their own identities as women with PCOS that they had previously been stripped of by their own doctors. Rather than giving their doctors all the power in the medical situation, women were able to use online spaces to educate themselves to be an equal in their medical care discussion. These spaces help women become their own advocates, empowering them to have discussions with their medical practitioners.

Additionally, it is not just the content and information on these sites that can be helpful to women. The group structure of some of these sites is also helpful, where being a part of a group can help women feel more comfortable talking about personal issues because it lessens the feeling of having a spotlight on them. When they are a member of a group, rather than the single spokesperson, they may feel more comfortable. Wendy K. Z. Anderson and Kittie Grace (2015) wrote:

Individuals may feel more ownership or investment in the community because they are not assumed to be the primary author; Facebook can therefore provide infrastructure for a community-owned space for a larger group of people more so than a blog because of its multifaceted organizational identity (Caers et al., 2013). (p. 946)

When women can be a part of a community speaking out on the same issues, rather than the sole voice for issues, they are more likely to engage. The separate but together nature of online discussion in social media provides room for communities to congregate in these areas for discussion, even if it consists of individual women communicating about the same issue in one space. The collective of women communicating about these topics can be beneficial to sharing sensitive issues. If everyone involved in the conversation is empathetic to what is happening, people are much more likely to feel comfortable sharing.

However, when focusing on health-related topics online, it can be important to be sensitive to the technical and cultural literacies of some women. In her study on online spaces for breast cancer patients, Shani Orgad (2006) noted patients must not only understand how to communicate in these spaces in a technical sense, but “also must have social and cultural competency, that is knowledge of the discursive frameworks and ‘hidden rules’ of the communicative contexts in which they engage” (pp. 893–894). Anderson and Grace (2015) furthered these sentiments of how women in these situations often don’t have the digital literacy to make these instances productive in their article, “Taking Mama Steps Toward Authority, Alternatives, and Advocacy: Feminist Consciousness-Raising Within a Digital Motherhood Community.” They wrote:

Unfortunately, efforts are constrained by a perceived lack of social, educational, and economical capital. Social capital comes in the form of digital and critical fluencies and educational and economical privilege. Group size, topic relevance, class, economic, and educational difference constrain the social support available to some members. (pp. 943–944).

Women’s offline lives can deeply impact how they communicate online. If their lived experiences don’t encompass communicating online and understanding the intricacies of digital communication, it can be hard for some women to find solace in these spaces. It is easier for women to benefit from online resources if they come to these spaces with a previous understanding of online conventions. And this is not limited to content and understanding of digital conventions. In addition, Phillipa Spoel (2008) in her analysis of an Ontario midwifery’s online resource, observed that even the design can be limiting to women looking for help. Spoel wrote, “My analysis of the design and verbal rhetoric of these websites indicates the limits rather than the opportunities that they afford for creating and sustaining alternative, participatory modes of health communication and community” (p. 285). If women are not culturally attuned to how to communicate online, they are left out of the conversations, meaning that women with greater technological access and knowledge are privileged over women who have the same illness, but cannot access the same information. This can keep women away from help that they need or want and it is important to note that, especially as women may be joining online communities and social media sites, that conventions and tools of the space may not be helpful if they are unable to understand how it operates within the community. However, in some cases, even the act of women coming to these sites with various struggles can be considered a cyberfeminist activity that should be appreciated because they are still online, working to learn and shape their own experiences.