Women, healing, and community: Cyberfeminist activity on Reddit

Collaboration

Spaces like reddit give women the opportunity to interact with other women with related circumstances, resembling the Alexandra Hidalgo and Katie Grimes (2017) guideline of collaboration, which helps connect people to others with similar goals (who they may or may not know yet) to “bounce ideas and evaluate choices.” Women want to understand what others with PCOS are going through and what they are doing for it. These users are coming to the r/PCOS for different perspectives, for insight, and for answers to questions about issues they are facing, including health decisions that they all are making in some ways. These posts can help women who come to the space understand that they may not cure their PCOS. The posts also give women avenues to collaborate with other lay-experts who can help them navigate how to live with the illness, as well as navigate through the r/PCOS site to find the information and discussions most relevant to their own experiences with PCOS. Two dominant themes that arise from r/PCOS are women asking for advice and providing criticism of doctors.

Posts asking for advice are detailed and long, unlike typical reddit posts. As women are likely trying to give as much information as possible, they will include information such as medication, weight, diet, length of periods, length of time living with PCOS, and other information along with the specific story they are trying to tell. Including this personal information can be helpful as these details all intersect with PCOS, and women want the other women in r/PCOS to know everything so that they can help give the right advice or point them to other guidelines. It is also a form of ethos building. By including this information, they are showcasing how their illness impacts them so that they can show their membership, both to the illness and r/PCOS. These posts often read like streams of consciousness, but in trying to connect and learn more from others, women are expressing real feelings. They are not concerned that others will be critiquing their writing; they are looking for real guidance on their illness. For example, one user asked:

kiramekkie
“Hi ladies, I've been trying really hard to find what's right diet wise for my PCOS. I have regular periods and most of my issues are in remission, but I still seem to struggle with weight and feeling energetic. I tried keto, carnivore, paleo, low carb paleo...well whenever I go lower carb (mainly just eating veggies, and animal protein) I get GI issues, like stabbing pains in stomach sometimes. The past week, I lost my appetite completely, thinking of eating more veggies and protein just made me sort of sick to think about. I don't know if this is my body telling me, girl, what are you doing?! Or if its mental? My noted I shouldn't take things too far and eat a variety, so I ate some brown rice, quinoa, chickpeas, I had basically not eaten grains and legumes for months, and NO GI ISSUES?! So, I'm thinking my body might just like a bit more variety, but that leads to higher carb. I have mild insulin resistance, but I want to lose weight (thinking it's what keeps me at higher set point) and I'm just confused. I feel like I follow so many carnivore and keto women, and I see their transformations and I don't know if I'm wrong or right anymore. I hate being scared to just eat! Does anyone else have issues like this, or does my body have to like detox from carbs? I don't know...I find it weird my stomach had such a hard time with just meat and veggies...btw I'm Mexican, not sure if genetics and ancestors diet has to do with this, I remember reading that eastern european genes are suited for carnivore diets, and peruvian for higher carb (it was a famous keto doctor using him and his wife as an example.) Any insight into your experience would be great.”

This post was followed up with many replies, all explaining how they had gone through this before and what has helped them. These include advice on diets and medications. No one pointed out the style of writing or length of post. The replies suggest an active desire to help each other, taking everyday concerns seriously and working together as a group to help these women. Not only do they share their own experiences, they often point them to other resources, external of the r/PCOS, as well as previous threads shared in the subreddit. In response to a different post from a user newly diagnosed with PCOS and dealing with depression, another user responded, “I am so sorry you are going through this. If you read through some of the threads, there’s great advice about others’ experience and things they’ve done to minimize the symptoms” (LouCat10, 2017). Not only are they valuing the experience of the original post, but they are valuing other experiences within the site as worth pursuing for information.

The other prevailing theme these women are looking to connect on is their doctors’ prescription for their healthcare. The r/PCOS members are collaborating together on best practices of some of the interventions they have experienced and had success with, or those that did not work at all. PCOS may often seem overwhelming because there are many diets and medication combinations, along with mental health initiatives that can go into treating PCOS holistically, so gathering information from different people can help. While one person with PCOS is not like the other with PCOS, much of the information shared can be helpful. The increased agency can give them voice in terms of their medical care.

Increased agency is important to these women as the major and persistent complaint users raise in posts about their doctors is that doctors don’t understand the full effects of the disease and don’t provide explanations as to why they are prescribing certain treatments over others. This can be why users include so much information about their medications, weight, and other important information about having PCOS in their posts. They have to present themselves in a certain way to get medical attention, but these kinds of illnesses don’t always traditionally present themselves, and this can be frustrating to a patient looking for traditional medical help. For example, one user discussed how body hair, hormones, and inconsistent periods were impacting her no matter how much she followed her doctor’s advice. She said she was told, “their [sic] was basically nothing I could do besides eating better and dieting,” even after she had lost 40 pounds (JenNJuice21, 2019). The replies to this focused on their frustrations with their own doctors, and their thoughts on how doctors don’t really understand PCOS and only treat one aspect of it—diet and weight—as that seems like the easiest advice to give, not understanding, or not recognizing, the other, very real side effects these women face. One reply stated, “I FULLY agree with you on doctors not understanding. That's why I got into this area to begin with. I was just looking for someone who understood” (mskaissar, 2019). Some women feel as though they have to enact how they are constructed as patients. As doctors were making women with an often-isolating illness feel more isolated, these women worked together to find the support and validation they know they needed. These stories, of course, are not isolated to women with PCOS. There are various studies that women are treated less aggressively than men when it comes to pain (Hoffman & Tarzian, 2003), and that women report often being discriminated against by their doctor based on gender (National Pain Report, 2014), but one way women are using this r/PCOS is negotiating and discussing the broader implications of their identities as women and what that means for their bodies. This is a clear cyberfeminist agenda: creating a space to define who they are and the voices they need to take control of their own care.

Navigating through the immense amount of information on r/PCOS has recently become easier for users as the members of r/PCOS have worked together to make the user experience as helpful as the advice given. The recent addition of flair has made finding information more efficient. Flair are tags that categorize posts for users to navigate through various topics. They act as an organizational tool, much like a hashtag does in spaces like Twitter or Facebook. Rather than reading through posts on the r/PCOS feed that can jump from topic to topic, or trying to search for specific terms, users are able to see what a post is about and decide whether it is a topic they need or want information about. The rules of the r/PCOS state that each post should have flair. At the top of each posting, there is a small note as a reminder to add flair; you can do so immediately to the left of the post and save draft buttons. This is a rule and practice on the r/PCOS that has developed over time in order to help people find pertinent information. The categories of flair were pulled from the most discussed topics or discussion types, including diet, fitness, rants, meds/supplements, and seven other categories. They are brightly colored so that members immediately understand what each post refers to. While moderators added the categories of flair, they pulled the topics from issues users continuously discussed in new posts and topics that would get the most responses, the topics that are the most common with women living with PCOS. While this is not unique to the r/PCOS, not every subreddit makes use of the flair option, but the organizational technique of reddit does help members of the r/PCOS find the information they need. Working together and engaging in information on this site takes multiple forms simultaneously; through their lengthy and informative posts with robust replies that offer conversation some women may not get elsewhere, as well as the organizational tools reddit provides, this space becomes especially dynamic for users in ways different from other subreddits.

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Reciprocity

The r/PCOS gives people the opportunity to connect and develop relationships with each other, which Alexandra Hidalgo and Katie Grimes (2017) advocated for, even if they do not know each other personally. Women with PCOS relate to others who have the same symptoms of the illness, including diabetes, infertility, or hirsutism. In the subreddit, they discuss very sensitive issues with people they do not know face-to-face because the majority of users understand issues related to the illness. The discussion board platform of reddit does privilege sharing and conversation, but there are other aspects of reddit, particularly within the r/PCOS, that help extend these connections to others into forms of self-empowerment and raw, authentic, gloves-off feminism they can translate into their offline lives.

While entering an online space where other women deal with the same issues may be of comfort to some users, for some women to feel comfortable discussing these issues, it may help to stay anonymous. As mentioned earlier, Redditors do not have to disclose their true name or any identifying element of their offline persona. Their 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 Willmott (2002) found in their study of PCOS, it often negatively impacts a woman’s perception of self, so even if women are sharing intimate information with others experiencing the same thing, the ability to do so masked can provide more comfort and 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; the reciprocity of the community makes it easy to feel comfortable exchanging this information and feel as though they are getting emotional support. 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 those who experience the same thing, the option for anonymity can be very useful. This challenges the notion that Redditors stay anonymous in order to say wild, offensive comments, which often characterize reddit. Within the r/PCOS, women may use the shield of anonymity to protect them to say whatever they want, not because it may be disrespectful, but so they may say what they need to get help. Reddit and the r/PCOS can help women play out their aggressions in ways that they would not feel authorized to in other online support spaces.

In the r/PCOS, no topic is off limits. One topic, hirsutism, is often an embarrassing issue to discuss and is a major issue with PCOS. But in the r/PCOS, users freely share what, how, and where they deal with this hair because they know many of the women on this space are having similar experiences, dealing with their unwanted hair. For example, users discuss these issues in the following two posts:

niterecora
I've had facial hair since I was 14. I agree with your points. There is nothing more masculating then having to shave every morning. I wish I had some inspirational advice but I don't. Pcos sucks. I guess it's slightly comforting knowing that when I'm shaving my face in the Morning, there's a beautiful woman like yourself shaving too.

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silentintroduction1
You are not alone. I went through 30 sessions of electrolysis which did reduce my hair a lot, but I still get very visible facial hair on my chin, neck, and cheeks. I used to shave every morning (I actually enjoyed shaving because it exfoliated my skin lol!) I stopped shaving recent and have started electrolysis treatments again.

Because so many of these women are sharing vulnerable information in the r/PCOS with others they may not know, the reciprocity of experiences can make it easy to feel comfortable exchanging this information. They feel as though they are getting emotional support, even if it is from someone they know nothing about except their PCOS diagnosis.

While anonymity can help with interactions, it is important to note that just reading these posts can be equally as important in creating relationships, according to Hidalgo and Grimes. Social media users describe this as lurk mode, where users on the platform read but do not interact. Within a space characterized by a discussion board format, with active and vigorous discussion through replies, lurking can still be an important avenue for some women to take on the r/PCOS. While the r/PCOS rules suggest lurking when a user does not have something positive or supportive to say, it can be still be an important option for those not quite ready to share their own experiences. Because women are often taught to keep our bodies secret, or that there is no place for discussions like these in public, lurking can provide an initial shield until women feel more comfortable for discussion. Unlike many Facebook groups or other online support groups for PCOS, women can come to the open r/PCOS just to learn from others. I fully admit to being more of a lurker on this space. It gave me the opportunity to learn and take in information while looking at common threads between other members and myself. While PCOS can be an illness that is hard to talk about having, lurkers are not acting passively; they are still engaging with information and experiences. And while many people may be shy in coming to reddit because of the reputation of the space, anonymity and lurking can reinforce the option to use this space for their own means.

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Respect

Respect is important for the r/PCOS. The rules encouraging respect work to help make conversations productive and give everyone an opportunity to contribute with positivity and constructive discussions. As I mentioned earlier, reddit as a whole does not always showcase a lot of respect among users. However, the r/PCOS strives to keep this space as respectful as possible. Moderators established clear discursive expectations for the community, helping to assist in this subreddit’s respectful tone. Two of its key rules include being supportive and positive, and if members can’t be those things, they must stay in lurk mode. By following these rules, members typically stay respectful in the posts and comments they leave. An example of this is when one user wrote

beepboop_throwaway
I don't really know what I want out of this post, but I am frustrated and don't know what to do. I am going to quit BC and try to work on diet and exercising more, but I am scared of falling into a depression/anxiety loop where I am too sad to cook or exercise and end up eating sugars and milk to feel better, which then causes me to gain more weight and experiencing more pain/lethargy. I am barely 23 years old, I am too young to feel so depleted of energy and down all the time! Ay, PCOS sucks.

Many users responded with sympathy:

litcritter10
I am so sorry you are suffering. It sounds awful.

cysta
TOTALLY GET YOU. I am in that loop. Stay strong.

When posters discuss their challenges or hardships, others quickly show support by replying with sentiments such as how sorry they are about what the person is going through or recognizing that this illness is hard to live with. While this may not be different from other online support groups or websites, it is important to note, as Katherine DeLuca (2015) argued, “Cyberfeminism can take many forms—from activist movements in online spaces to more mundane expectations of the relationships between gender and technology” (Cyberfeminism and Digital Civic Engagement, para 2). By even coming to this and searching for a little support, women are creating roles and meaning for themselves in these spaces, whether or not they are aware of the cyberfeminist aspect of these interactions.

In addition, many users show respect to the time others put into reading the posts. If a post is a rant where the user is sharing their dismay, or negative feelings, without any positivity or hopefulness (which is a guideline in the sidebar), they would often put “RANT” in the title to prepare the reader for the post. For instance, Cystic_Hell both warned readers about a rant and admitted they are not sure that the r/PCOS is the place to discuss the topics in their post. In a post titled, “[Possible vent]Picking a PCOS diet and remaining sane?” they begin, “I am at my wits end. I don’t even know if this is the place, but I don’t know where to go.” (Cystic_Hell, 2017). This type of signaling shows respect for their fellow r/PCOS members’ time, and when users add the rant flair, it is easier for readers to make the decision to go into the post or keep reading beyond these posts. However, when posters of the r/PCOS acknowledge the post’s length and potential pessimism, other members may feel more comfortable sharing their vulnerable feelings with others who have likely experienced similar feelings. In fact, rants have their own category of flair to accommodate the user looking to avoid this, especially as rants often go against the key themes of being positive. These posts may be triggering to people and further amplify the feeling of hopelessness. Across these various conversations, the r/PCOS increases women’s capacities to take control of their own needs and experiences within the space, and the space strategically helps to manage this; if they need to rant, they have space to do this, but women who may be sensitive to negativity have the ability to navigate around that.

Additionally, the r/PCOS has also been able to mostly avoid the “trolls” that are often found in other subreddits. Trolls are people who purposely post in communities to negatively provoke other users. Because much of reddit is not officially moderated by reddit staff, trolling has been problematic on this site and has risen since the 2016 presidential election. One subreddit moderator commented, “‘I know there’s always been a ‘dark side’ to reddit. But the dark side used to be confined to the corners…it was manageable.’” (Menegus, 2016). Now, reddit trolling is more visible in all areas of reddit. However, moderators and members of the r/PCOS work together through rules and interaction, keeping trolling a little more controlled. But some negativity does arise within the r/PCOS: The most common theme is accusing the original poster, especially if they are using the space to rant, of not wanting to get better because they are more interested in complaining than taking action. Prior to the more extensive guidelines, other users would often stand up to the negative commenters, calling them bullies and countering with supportive advice. With a few more moderators in place, many negative comments get deleted before they have time to be viewed by as many members. In these cases, users and moderators are actively working to define and enact parameters for how they want their subreddit to operate. Not content to let typical behavior of reddit have room in the r/PCOS, they are setting their own purpose and functions for their own site.

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Building Community

As the first rule in the r/PCOS asks users to be supportive, when it comes to community building and “creating an ethos of unity,” (Hidalgo & Grimes, 2017), how welcoming and inclusive the subreddit is provides an area where the r/PCOS still struggles. The r/PCOS can be welcoming in many ways for those who have PCOS, but it can also be a space for those who know or support someone living with PCOS. For instance, partners sometimes post in the r/PCOS asking for advice on how they can help:

gravity_fish
Hello, I just got off the phone with my wife...she has just left the specialist who has confirmed what she feared, that she has PCOS. She is very upset at the moment as she has suspected for several years (based on her symptoms) that she has PCOS, but she has struggled to find a doctor that will listen. I've just come here so I can get some advice from others who have some idea of what she might be going through and to see if there is anything I can/should do to help?

Still, while the r/PCOS members can be welcoming to those who do not have PCOS, it is not always easy. In the following example, the partner is complaining about the lack of sexual drive from their fiancé:

chubbyweebu
It's ruined the sexual aspect of our relationship. She doesn't want birth control because it makes her gain weight but even off of birth control she has no libido and I get so pissed we've only had sex a handful of times the past two years when her symptoms started showing up and it's gotten to the point where I just make petty remarks from time to time about it and it's causing a rift between us idk what to do. We used to have sex all the time when we first started dating 4 years ago and now it's no where to be found.

All responses call them out for not being a supportive partner, like the comment below, while some eventually do provide some information and suggestions for the poster.

squattingkathy
I have PCOS and still have an active sex life with my boyfriend. The key here is that he is not an entitled douchebag who feels that his dick is the real victim of my medical condition. Try giving a shit about her wellbeing. It’s a real turn-on.

While members want to help others understand PCOS, the departure from typical posters and typical approaches to certain topics in the r/PCOS can be a contrast to what users expect when reading posts. These conversation threads clearly indicate that members do not expect typical misogynistic behavior in the r/PCOS, and many of them are not afraid to challenge this behavior when it does arise. Again, this is where some of the anything-goes behavior reddit is known for can work with these women in the r/PCOS. It provides room for the gloves-off feminist activism that pushes back against unwanted conduct in their space.

A similar exchange occurred [TW: anti-trans bigotry] when a trans woman posted the following:

chamclowder
Hi, I just was taking a look at your subreddit and just wanted to say that I love you all and understand your struggles very well and I wish you the best of luck. I’m a trans woman and I seriously understand disliking masculinization and the mental toll that it brings. I understand the depression and anxiety and uncomfortability that ensues and just wanted to say you are strong and your struggles are valid.

This original post is immediately followed by a comment from the moderator:

anonymousdyke
“Note from moderator: Trans people are valid and welcome on this sub. Rude people less so, you have been warned. Edit: Comments are now locked

This note from the moderator is further followed by a string of deleted comments. While some people come to the site to be allies to women with PCOS, it may be hard for some members of the site to appreciate this. Dealing with these differences in the subreddit may be confusing, especially if the typical reddit response is for people to respond crudely and hide behind their anonymity. The r/PCOS rules attempt to ease this behavior and there are many on the site that do stand up to this behavior. Unfortunately, as even Alexandra Hidalgo and Katie Grimes (2017) admitted feminist spaces cannot live outside sexist and racist culture, the debate of what and who should be included in the site highlights a tension that hopefully helps the community grow in their own way outside other reddit communities. This, along with the rules that attempt to guide the community, can work to make the r/PCOS existence more manageable.

Another topic [TW: infertility] that has incurred some negative pushback among the r/PCOS members are pregnancy and fertility. To many, infertility is the most troubling side effect of PCOS, but it has not always been a leading topic of discussion on the r/PCOS in comparison to other side effects like weight gain or impacts of medication. When I first started visiting the r/PCOS, this was a major difference I found from other sites, such as SoulCysters, that focused primarily on a woman’s struggle to conceive. But as the r/PCOS has grown in membership, more users have begun to discuss pregnancy, and this has created some hostile responses from other users. A permanent post at the topic of the r/PCOS is titled, “Reminder: Pregnancy Posts ARE Allowed Here” (FivebyFive, 2019). Within the post, the author, who is a moderator, explained that some posts with the words baby, pregnant, or kids were flagged as offensive. While moderators acknowledge in this post that pregnancy is a sensitive topic among women who struggle to have children, that it can trigger many emotions, and that many users may not even be interested in infertility information, they also acknowledge that for this to be a community for women with PCOS, pregnancy posts cannot be banned. Not only have Redditors featured this information at the top of the r/PCOS, but they have also included it in the official rules, stating, “Fertility or Infertility is a very sensitive and personal matter. Please keep your personal views to yourself. Do not suggest a person adopt or have an abortion. Do not judge someone for wanting to adopt or having an abortion either. That's not our place. Explain there are options available whatever the situation may be.” Further, moderators added a fertility flair category so that users can see if the post is related to these issues and choose whether or not to continue reading.

When it comes to moderators on reddit, many believe that moderators may gatekeep the information and conversation that members want. Adrienne Massanari (2015) wrote, “moderators have a great deal of power over the kind of content that appears in their subreddits. They set explicit rules regarding sources, tone, or content of submissions and comments” (p.10). However, a large part of how the r/PCOS remains a space that is hospitable to women and focuses on their lived experiences is due to the moderators who remove content that does not follow the purpose of the subreddit. They appear to look at the needs of their fellow members and provide guidelines and incorporate reddit tools that will help with the r/PCOS user experience. As these women debate the purpose of this space and what is acceptable and unacceptable to post, this transparency highlights the cyberfeminism direction of the space. These women are creating meaningful choices—together—as to how they want their community to be as open as possible without letting the misogyny of reddit overrun it.

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