Women, healing, and community: Cyberfeminist activity on Reddit

r/PCOS

The PCOS subreddit is a reddit community specifically for people looking to share their own PCOS experiences and questions. The description stated, “A Place to Discuss Polycystic Ovarian Syndrome and all that comes with it” (r/PCOS, 2017). Since starting in 2010, the r/PCOS has grown in numbers. From 2015 to 2019, the space grew from a little over 10,000 members to 36,000 members. The sidebar, a space on the left of the screen, explains the purpose of the subreddit, who the moderators are, and what rules guide the content and discussion. It is important to note that the detailed r/PCOS sidebar is a feature unique to the r/PCOS. All subreddits have sidebars, but many just list the usernames of the moderators, so the r/PCOS takes advantage of all areas of space allowed them in the interface.

The r/PCOS has six different moderators, but the users guide discussion topics on PCOS and decide how important an issue is by upvoting it. As the r/PCOS has grown in numbers, the six moderators have added some structure to this subreddit that has helped the members better navigate the community and promote a more inclusive and safe space. Some of these additions to the space come from built-in reddit interface capabilities, such as adding flair to categorize the posts, but many of these are expanded and added rules that work to make all participants feel included and keep the focus on PCOS and all the experiences that come along with it. Rules focus on the kind of behavior the r/PCOS would like to see in posts that can help, not further isolate people. Rules such as “be supportive,” “be positive or lurk,” and “don’t judge regarding fertility” are designed to remind people that everyone’s journeys and lived experiences are different and valid, and the rules are also designed to try and avoid some of the pitfalls and behavior associated with reddit. Again, as one of reddit’s key features is anonymity, which can also lead to rude and aggressive behavior, the moderators of the r/PCOS have worked – through these rules, as well as careful observation of posts – to keep this space as supportive and helpful as possible for members.

Why reddit?

While reddit is a male-dominated discussion board space that can often seem frenetic, it does have some conventions that can offer women with PCOS a more supportive space than other online PCOS support groups that live as static websites or social media platforms. For example, other online support groups are corporate sponsored and offer more rigid templates and tools that may not provide the kind of usage a woman with PCOS is looking for. One of the major affordances reddit does offer is the aspect of anonymity. As discussed earlier, redditors do not have to disclose their true name or any identifying element of their offline persona. On a space like Facebook, profiles are mostly connected to real-life identities, and if a woman with PCOS joins a PCOS support group there, others can still see identifying information. A woman’s option to remain anonymous can provide a sense of privacy in discussing very vulnerable information about themselves. And symptoms of PCOS can feel very vulnerable and embarrassing for women to discuss. As Celia Kitzinger and Jo Wilmott (2002) found in their study of PCOS, these symptoms often negatively impact a woman’s perception of self; the notion that they may share such intimate information (even with others experiencing the same thing) may be one reason women are coming to reddit to discuss their illness. Women with PCOS want to interact with others who are experiencing the same thing, feel comfortable exchanging this information, and feel as though they are getting emotional support, but still may find it hard to share openly. In fact, Shaina Sowles et al. (2018) wrote, “The open yet anonymous discourse uniquely facilitated by reddit provides a natural refuge for individuals with stigmatized conditions” (p. 138). And for women who experience side effects of an illness that may seem embarrassing to talk about, even with others who experience the same thing, the option for anonymity can be advantageous.

Another aspect of reddit that may appeal to women with PCOS is that it provides more space for conversations and detailed exchanges between members. Many PCOS websites and Facebook groups often use these spaces to share articles they have read, before and after pictures of weight loss, or inspiring memes. Reddit’s interface design is much like a traditional online discussion board as opposed to a news feed with individual, multimodal posts and visible comments. Reddit users must click on a post to view the thread. While the format is like a discussion board, a typical post on reddit does not often contain much textual content. Users do not typically write long posts or even include text at all, including a meme or gif, or a link to an article. While not technically a microblogging site, users prefer shorter posts. However, the r/PCOS privileges longer, more engaged posts and conversations through replies. Most interaction occurs in the replies of a post. With any reddit discussion, the replies often hold the most robust discussions. The r/PCOS takes advantage of this. In fact, the option to include images or videos in their posts is not available to users on their computers; users would need to do this on the mobile platform. However, most do not include images and remain invested in textual discussions, using the space to fully describe their experiences. The r/PCOS members use the discussion-board-style space to really dig into their questions and concerns and work to explain what they are feeling. This use can seem contrarian to users coming from other social media sites, and even other subreddits, where quick bursts of information in different modes is the overarching way to communicate.

While anonymity and preference for textual exchanges that allow anyone to say anything they want while hiding through a screen may add to reddit’s reputation as a misogynistic social space, it is actually these points that have provided the r/PCOS means to grow and give women with PCOS a space to safely discuss all they want about the disease, no matter how seemingly embarrassing. As reddit has grown, so have some of the interface capabilities that have further given some structure to the r/PCOS that may not be as popular in other subreddits or social sites.