“Dear Spoonie Mom:” Digital Open Letters as Counter Narratives for Chronically Ill Mothers

by Cristina De León-Menjivar, Old Dominion University

I was recently asked to find a photo that captures my struggles as a mother with chronic illness. I spent hours scrolling through the hundreds of photos on my phone. I scrolled, scrolled, and scrolled. Nothing I saw seemed to fit. All I saw were photos of me and my two daughters smiling, happy, and making good memories. None of the photos captured my struggle. That struggle to pretend I’m ok when I’m not ok, the struggle to move when my body so desperately needs rest. Then, I realized why I could not find what I was looking for. I have spent years trying to fake it, faking that I can keep up with all my family wants to do (only to pay for it dearly the following day). And I certainly did not want any photos I took to disrupt the narrative I was trying to create. The photo on the right was taken in 2018, and although it was taken many years ago, I can still remember that day and how difficult it was for me. In 2018, I was at the height of my struggles with hypothyroidism and endometriosis. My symptoms affected me on a daily basis; the only variance was the intensity of them. As I looked through my photos, I realized this photo is the one that captures my struggles as a mother with chronic illness, in particular because it looks like a very normal photo of a mother and her child. On this day, my husband made plans to take our family to a beach. The beach was quite rocky and steadiness was required to navigate the terrain. Yet on this day, I felt an incredible fatigue and debilitating brain fog. The brain fog was so intense I felt dizzy and my vision blurred off and on. My youngest daughter (who is with me in the photo) was not yet steady on her feet, so I tried to carry her. After a few minutes of walking through the rocky beach, I realized I could not do it; I was either going to drop my daughter or make myself fall down. I felt overcome with frustration as I watched my husband and oldest daughter make their way down the shore. “What is wrong with me? Will it be like this forever?” I thought to myself. Not wanting to spoil the day, I told my youngest daughter that “mommy needs to sit for a little while,” so I let her play in a small tide pool as I sat on a nearby rock. Then, I asked her to take a photo with me; we took the picture and I smiled as if everything was fine. Mommy is fine. So this is the photo that captures mothering with chronic illness. It is a photo that captures the invisibility of the struggle, the narrative I tried to keep up, and the “all is well” image I so desperately want my daughters to have of me.

Introduction

For chronically ill mothers, feelings of guilt, helplessness, and frustration can take over their worlds. Many chronically ill mothers that I know say that they feel overlooked by society, and sometimes even by their own families. These feelings may be part of the reason why there is a growing community of chronically ill mommy bloggers who use the public forum provided by the Internet to voice their experiences for the chance that they might be not just heard but also understood, and perhaps even find others like themselves. Acknowledging the cultural difficulties surrounding motherhood and chronic illness, mommy blogger Britt Clark writes, “a lot of people do not like to talk about how hard it is to raise children and fight a chronic illness because maybe they don’t want to come off as being unappreciative, or seem like they don’t love their children as much as any other mom, or that they simply can’t get it together.” As she states, despite the fact that a person is literally forced into this situation, being a chronically ill mother may induce an unimaginable guilt. As a chronically ill mother myself, I understand the desire to display a certain image and narrative. Yet, I never questioned this impulse until I became a rhetorical scholar. Part of rhetoric’s inquiries is looking into how cultural narratives are created and maintained; it can look at how we perpetuate expectations about what is acceptable to discuss and how we use communication to construct our realities. But this is just one side of the proverbial coin. 

Through strategic uses of rhetoric, we can also disrupt cultural narratives, expectations, and stereotypes. We can become rhetors in our own right and wield that power to combat harmful discourses; we can create counter narratives that redefine our existence. As a feminist scholar of rhetoric, I believe that acknowledging and highlighting the rhetorical practices of chronically ill mothers is important to help reveal the cathartic and democratizing power of language, especially as it relates to populations that grieve. For this reason, this essay focuses on public blog posts published by The Mighty, an interactive online health community, and written by chronically ill mothers in an epistolary style whose aim is to redefine motherhood in a way that is reconciled with chronic illness. The Mighty is an interactive online health community for people dealing with chronic illness and/or disabilities which focuses on publishing first-person narratives from people in this community to empower one another. In its own words, The Mighty’s goal is to “make health about people:” That’s why we’re building the biggest and most diverse collection of first-person stories about health and disability on the internet. When you share your story or write for The Mighty, you’re helping to break stigmas, foster connection, and let others know they’re not alone in their experiences (The Mighty).

Blog posts written as open letters represent a significant portion of the website’s published content — a simple search of “dear” reveals pages and pages of results written to various “addressees” including: anorexia, cancer, congress, preschool teachers, and more. Like with all the blog posts on The Mighty, users are able to post comments on the blogs, creating an interactive space to engage not just the intended addressees but any reader. This feature transforms the blog post from an open letter into a communal space that creates an environment for understanding. All of these characteristics and features create a genre which I call digital open letters, a term which aims to capture the rhetorical-techno-activist qualities of this growing way to share one’s story and grow a community. Using an approach that combines counter narrative theory and cultural rhetorics, I argue that these digital open letters are counter narratives, as they present motherhood and chronic illness not as mutually exclusive; in these open letters, motherhood and chronic illness are compatible and even empowering. This redefinition is not just rhetorical word play that challenge dominant cultural discourses and beliefs, but these posts can and do have the potential for community-building and changing how chronically ill mothers see themselves and choose to mother.

While chronically ill and disabled-mothers have been studied (Thorne; Mitton et al.; Filax and Taylor; Prilleltensky; Lappetelainen et al.), extant scholarship on mommy blogs (Lopez; Scheinbaum et al.; Van Cleaf; “Mommy Blogs”; Abetz and Moore) has not included this group as a focus population, especially as it relates to their use of the epistolary style. Yet chronically ill mothers using this style of writing in digital open letters represents a growing community of women who relate their experiences through online health communities or on personal blogs. For readers who are also chronically ill mothers, this writing practice can have a significant outcome on how they view their everyday experiences, which leads to the following questions: 

1. What do the digital rhetorical practices (blogs) of chronically ill women reveal about the dominant discourse concerning motherhood and chronic illness? 
2. How do these writers use blogging and an epistolary style to create agency, community, and challenge the dominant discourse regarding their identities? 

By unraveling how these women use writing and the rhetorical space afforded by digital open letters to understand their experiences and challenge beliefs, chronically ill mothers—as both authors and readers of these posts—can discover ways to manage conflicting demands and develop a deeper understanding of their own bodily knowledge. Also, able-bodied, non-mothers are afforded insight into the experiences of chronically ill mothers, which constructs a bridge to understanding and support.  

Deconstructing the Motherhood Ideal

The dominant cultural ideal surrounding motherhood conjures up images of a woman in her prime, in her element, and living out her entire purpose and being. While this presentation of motherhood represents and reinforces a persistent gendered ideal that is informed by white middle-upper class culture and upholds patriarchal systems and structures, this “ideal” is hardly challenged, even by women themselves. In Rhetorics of Motherhood, Lindal Buchanan writes, the Mother, I maintain, operates as a god term within public discourse and connotes a myriad of positive associations, including children, love, protection, home, nourishment, altruism, morality, religion self-sacrifice, strength, the reproductive body, the private sphere, and the nation (8).

However, what happens when a woman fails to embody these ideals? Inevitably, this vision of motherhood is perilous for women who do not meet these standards and stereotypes and results in “serious rhetorical consequences” (Buchanan 21). These rhetorical consequences can be seen in digital open letters written by chronically ill mothers. Because these mothers are at odds with many of the qualities associated with motherhood, their writing often tackles how to still maintain the identity of “mother” while missing a number of (what they see as) key qualities. 

Key to understanding the life of a chronically ill person is learning about the “The Spoon Theory.” This theory was created by Christine Miserandino to describe what it is like to live with chronic illness (Miserandino). The idea is that a chronically ill person only has a finite amount of energy and this amount of energy is represented by a certain number of spoons. For example, someone with fibromyalgia might only have six spoons a day, while someone who has a milder illness might have eight spoons. Each activity or task costs a certain amount of spoons; suppose that a shower costs one spoon and cleaning the house costs four. For the chronically ill person, these spoons quickly run out, which means nothing else can be accomplished that day. Now, imagine chronic illness coupled with the demands of motherhood. Being a “spoonie mom” means you also have to deal with and track symptoms, remember medications and their refills, go to numerous doctor appointments, and monitor endless tests. For the woman who is both a mother and dealing with chronic illness, there is an unimaginable pressure to perform: to be a “good” mom, to “deal” with her illness in a way that does not burden those who surround her and, especially, those who depend on her. As a result of these pressures, she is in a constant fight to silence her own embodied knowledge because it conflicts with the demands of the dominant discourse about motherhood. Inevitably and ironically, her mind and body can deteriorate in an attempt to be who she thinks she should be. One way that contemporary, chronically ill mothers are negotiating this conflict is through blogging, which provides a powerful platform where they can use writing and communication to create a community that confronts oppressive discourse and redefines their experiences. 

One way that women push back on idealized, patriarchal notions of motherhood is through “mommy blogs,” which are defined as online journals that document “the experiences of motherhood and motherwork” (“Mommy Blogs” 2). Through blogging, mothers create their own spaces where they can meditate on and reframe their experiences without the stifling voice of the dominant discourse. Mommy blogs emerged in 2005 and since then have grown exponentially (Lopez). Although most mommy bloggers are diverse in terms of race, ability, class, and sexual orientation, there are significant groups of mommy bloggers from other social locations; despite any differences in social location, though, most mommy blogs focus on the idea of “maternal ambivalence” (O’Reilly 4). Notably, scholars such as Lori Kido Lopez and Kara Van Cleaf argue that mommy blogging is a political, radical act. This act makes the private public by depicting the realities of motherhood: mommy bloggers are creating a different picture of motherhood to what we see in the mainstream media. Instead of the vision of the loving mother, we see women who are frazzled by the demands of their newborn baby, who have no clue what to do when their child gets sick, who suffer from postpartum depression and whose hormones rage uncontrollably (Lopez 732).

By presenting images of motherhood that are less than ideal, women create a resistance that is difficult to ignore. Most blogs by mothers outside of the dominant groups (e.g. class, race, or ability) remain on the margins of the mamasphere, yet online communities like The Mighty represent a way to centralize the voices of these mothers so that there is increased exposure to their blog posts.

Scholarship on mommy blogs centers on how women use blogging as a means to negotiate meanings and expressions of motherhood. For example, in Scheibaum et al.’s 2017 study on mommy blogs written by working moms, the authors illustrate that women use this space to discuss issues such as working through feelings of sacrifice and dealing with employers who do not support moms who need to pump breast milk. In these blogs, the authors write, mothers can discuss “darker side issues” (239), issues which perhaps are typically reserved for more private writing genres, such as journals or diaries. Yet scholars also view mommy blogs as a bridge between these more private writing genres and public discourse. Historically, women’s writing was circumscribed to diaries, journals, and letters (Lopez; Delafield). For example, in the nineteenth century, letter writing widely became a culturally accepted space where women could create and wield rhetorical agency otherwise denied to them; in these letters, women could express concerns against the established order but also use them as a means of reflection (Delafield). Although the posts in this essay are not private correspondence, they do reflect a merge between blogging and the epistolary tradition by employing an epistolary style in a blog post. Regardless of the era, an epistolary style affords an opportunity to recreate the narratives of their lives, which may result in catharsis and healing. By merging this style with blogging, chronically ill mothers transform both genres into a new genre that can facilitate deeper connections with their readers.

Mothering While Ill: Building a Community

The struggle to create a sense of community when one’s very existence is being oppressed is not a new concept to the chronically ill and disabled community. Yet this sense of community is key to establishing any kind of sense of well-being as one endures daily mental and physical struggles. Leah Lakshmi Piepzna-Samarasinha, a disability activist who lives with fibromyalgia, chronic fatigue syndrome, and PTSD, addresses this need for community in her book, Care Work: Dreaming Disability Justice. In her work, she explains that foundational to a disability justice framework is the idea of resistance through community, a community that is “born out of collective struggle, drawing upon the legacies of cultural and spiritual resistance within a thousand underground paths, igniting small persistent fires of rebellion in everyday life” (21). In these lines, she explains how a sense of community enables acts of resistance which affect the daily lives of those persons that community empowers. Thus, community-building is not only desired by chronically ill and disabled-persons; it is essential to personal, social, and political progress. 

However, this progress may take a different shape because, with this community, the personal is political. In Johanna Hedva’s “Sick Woman Theory,” she argues that although ill persons may not be able to participate in social and political movements like the rest of the population (e.g. marches, protests, etc.), they can still enact change. She writes, The most anti-capitalist protest is to care for another and to care for yourself. To take on the historically feminized and therefore invisible practice of nursing, nurturing, caring. To take seriously each other’s vulnerability and fragility and precarity, and to support it, honor it, empower it. To protect each other, to enact and practice community. A radical kinship, an interdependent sociality, a politics of care (Hedva 13).

Piepzna-Samarasinha illustrates this idea when she writes that once she engaged in her own community-building efforts, which included caring for others who are ill by doing things such as buying fragrance-free soap and booking wheel-chair accessible hotel rooms, she became “less willing to accept ableism” and that it changed the lives of those within that community (52). 

Building on the rhetorics of care that Piepzna-Samarasinha and Hedva propose, rhetorical scholars such as Amy Vidali and Jay Dolmage acknowledge the power that rhetoric and writing can have in creating and transforming perspectives on disability, affecting subsequent cultural narratives. In fact, Vidali acknowledges that writing open letters that challenge disability representations is an effective way to operationalize critiques against oppressive cultural norms (1). Such letters offer a space to meditate on the rhetorical constructions of disability, which can question cultural ideas surrounding normalcy. Furthering this idea, Dolmage highlights the rhetoricity of disability, stating that while disability does have biomedical components, the culturally constructed rhetoric surrounding these differences is what creates false boundaries between what is “normal” and “disabled.” To recast disability in ways that “emphasize and enable embodied differences to thrive” (96) is one way to overcome monolithic definitions that marginalize. These perspectives align with the current study, as the posts being analyzed are open letters that challenge conventional representations and work to illustrate how embodied differences can thrive, even in motherhood.

A notable way that chronically ill mothers engage in community-building practices is through online means, and the online health community The Mighty is one of the largest communities of its kind. In 2018, the online community reported to have 2.5 million members and aimed to attract 10 million members by the end of 2019 (Sluis). The choice for online engagement is one that complements this community precisely because it does not require much physical effort. Many chronically ill and disabled-persons may spend a lot of time at home because of their condition/s, so engaging in any community-building efforts must be done in creative ways that do not cause extra physical or mental distress. In fact, the idea of writing from bed is “a time-honored disabled way of being an activist and cultural worker” (Piepzna-Samarasinha 15). Although the digital open letters analyzed in this essay do not disclose where the authors wrote from, the posts’ online presence does indicate a conscious choice by the authors, a choice to make their voices heard not just through the most convenient means but also a means that is as far-reaching as possible, through a medium that simultaneously creates and engages a community.

Writing for/with a community connects with one of Jacqueline Jones Royster and Gesa E. Kirsch’s key feminist rhetorical practices: social circulation. Royster and Kirsch describe social circulation as a metaphor to “indicate the social networks in which women connect and interact with others and use language with intention. These ever-vibrant, interlinking social circles connect women not just across sociopolitical and cultural contexts, settings, and communities—locally and globally—but also across generations, across time, and across space” (101). The digital open letters in this essay illustrate a desire to achieve all of these rhetorical goals and the medium of public, online blog posts conveys this intentionality. Furthermore, the counter narratives presented in the posts offer a revolutionary way of recontextualizing chronically ill mothers’ difficulties both personally and socially. New understandings that emerge from counter narratives that are both shared and engaged with can be incredibly meaningful for this community and they can create an impetus for change. Colin Cameron discusses this idea of counter narratives inciting change in the disabled community, writing: …through the development of new narratives, people with a range of impairments collectively identify as disabled on the basis of having been excluded from active participation within ordinary life, a sense of belonging and relationship emerges, as well as the suggestion of a collective response and activity (205).This “collective response and activity” establishes a foundation for significant cultural change facilitated through a rhetorical means; through these new narratives, being chronically ill or disabled is now defined by the community itself.

Methodology

The main texts used in this project are online, public blog posts (digital open letters) written by chronically ill mothers and published by The Mighty, an online digital health community that aims to support those living with or caring for others with illness and/or disability. To analyze these digital open letters, this project uses narrative analysis informed by counter narrative theory and cultural rhetorics. Counter narrative theory and analysis is considered interdisciplinary but has a particularly notable presence in disability studies (Harter et al.; Lappentelainen, Sevon and Vehkako; Gill; Cameron). This presence is marked by the desire to confront the cultural narratives about disability that uphold oppressive structures; these structures marginalize and define disability identity in ways that are patriarchal, racialized, and classed. In this rhetorical space, counter narratives function to voice different ways of living and understanding in order to challenge assumed identities. Writing about counter-narratives, Lueg Starbaek Bager and Lundholt write,

being observant of narratives represented in the social world, and of the power relations they are embedded in, can contribute to the gathering of insights on marginalized positions. Stories revealing these marginalized views can be called counter-narratives. Counter-narratives resist another narrative, this one often being, or being perceived as being, more powerful. This simple rule indicates the assumption of two narratives in confrontation and apprehension. Most affirmatively, counter-narratives can be interpreted as creative, innovative forces fostering beneficial societal change; forces holding productive potential for progress, development, as well as for ethical issues such as justice and accessible resources (4).

This methodology is useful when discussing the blogging practices of chronically ill mothers, specifically because the public posts represent a challenge to the dominant discourse regarding their identities in a way that promotes community and socio-cultural change. By presenting blog posts that are brutally honest as well as challenging, these mothers engage in counter narrative practices that confront ideas about what chronically ill mothers are or are not capable of; these narratives empower chronically ill mothers by seeing their experiences voiced instead of stifled. 

A cultural rhetorics approach complements counter narrative theory because it emphasizes research that is useful and grounded in the everyday, using stories as theory and method (Powell et al.). This lens is important for chronically ill mothers so that their competing demands are illuminated; this illumination is significant for not just the able-bodied, non-mother but also for the chronically ill mother who may not realize what she is struggling with and against. Thus, mothering and telling one’s mothering story become an important way to confront dominant narratives; mothering and storying become “both method and [a] genre of activism” (Osorio). In particular, cultural rhetorics looks at how “cultures are built around particular beliefs and practices, which lead that culture to value some things and not others” (Powell et al.), thereby creating a lens by which one can discern the meaning and value of motherhood and chronic illness as it is rhetorically presented in mainstream U.S. culture, as well as—and perhaps more importantly—how it is understood in smaller, disability-focused communities.

Method

The platform of The Mighty includes an open access database of members’ public blog posts about living with illness which are viewed and shared on the web and social media (The Mighty). To be included in the study, posts must have been written in an epistolary style; however, they are differentiated from the epistolary genre in that these posts are not a private correspondence between two people. The posts used are written in an epistolary style and addressed specifically to other chronically ill mothers or to the children of chronically ill mothers; they also discuss the author’s experience mothering with chronic illness. Any digital open letters addressed to mothers from children or posts about mothering a child with chronic illness are not included in this analysis. A total of twelve digital open letters from the archives of The Mighty met these criteria. Because the experiences and struggles that are tackled in this project are deeply personal, they are best captured in writing that aims to be raw and cathartic, and that is how these chosen digital open letters are constructed. These digital open letters are candid portrayals of the struggles of daily life as a chronically ill mother; these struggles are both mental and physical and the women in these texts are open about their experiences. One of the major issues chronically ill mothers face is being mis/understood. However, by using these digital open letters as the anchoring texts in this project, I give their voices the center stage, thereby not attempting to filter their words through someone else’s understanding but allowing them to voice their experiences firsthand.  

The narrative analysis specifically focuses on how the dominant discourse about motherhood and illness are portrayed and how the authors use their position as rhetors to envision their worlds differently. Narrative analysis is appropriate for this project because it aims to “interpret stories that are told within the context of research and/or everyday life” (Allen). Because my corpus is intensely personal posts that aim to convey the everyday struggles of chronically ill mothers, narrative analysis allows me to identify how these mothers understand the cultural expectations of mothers and how they perceive these expectations in relation to their own embodied knowledge as women with chronic disease/s. I also address how the digital open letters use the epistolary genre as a rhetorical means of reconciling conflicting identities and demands and how their writing encourages other chronically ill mothers to emerge more empowered.

In the children’s show “My Little Pony,” the pony characters each have a “cutie mark” that looks like a colorful tattoo on their bodies. A cutie mark can be understood as an image that illustrates something prominent about you, such as a dominant personality trait or your job. For example, Apple Jack is an apple farmer and her cutie mark is an image of three apples. One day, as I watched “My Little Pony” with my six-year-old daughter, she stopped and looked at me. Poignantly and confidently, she stated: “Mom, if you had a cutie mark, it would be a medicine bottle.” I smiled at her, and tears began to well up in my eyes. “Is this how she sees me?” I questioned myself. Guilt riddled my mind and body. “She deserves a better image of a mother,” I told myself. “Why did she not choose something more positive? What do I need to change to get her to change that cutie mark? What did I do wrong?”     

Analysis

Irreconcilable Differences: Motherhood and Chronic Illness

Cultural understandings of motherhood often create a dichotomous perception: mothers are deemed either “good” or “bad.” These “good” and “bad” images are socially-constructed and culturally-perpetuated through media portrayals and assessments, such as in movies and “best and worst moms” lists in popular magazines (Hayden & Hundley). “Good mothers” acquiesce to cultural expectations that relegate them to the domestic sphere and are selfless in their pursuit to care for their children (Kinser; Hayden and Hundley). As Lori Kido Lopez writes, “Motherhood is impossible to perform perfectly, it is all-consuming, it places women into dueling camps and forces them to decide which side they are on, and yet it is the one thing that all women are told that they must desire most out of life” (732). A woman’s fulfillment is expected to come from their roles as mother, fulfilling the institution of motherhood. Motherhood is generally understood by feminist scholars as a cultural-social construct that oppresses women and denies them agency in defining their own mothering experiences; specifically, “motherhood is primarily not a natural or biological function; rather, it is specifically and fundamentally a cultural practice that is continuously redesigned in response to changing economic and societal factors” (O’Reilly, 2004, pp. 4-5). Understood this way, the concept of motherhood is thus mutable, which means there is room for new understandings and perceptions for how society and women see themselves. Sara E. Hayden and Heather L. Hundley argue that technological media expansions help to facilitate changes in cultural understandings of motherhood, specifically through the use of “websites and blogs” (5). As chronically ill and disabled-mothers use these new mediums to relate their own experiences, their creative use of rhetoric interrogates established cultural norms that have only contributed to their difficulties.

While a number of the writers in this study eventually do attempt to rhetorically balance their realities with illness and their roles as mothers, nearly all of the posts initially tackle the cultural discourse surrounding motherhood, illustrating how it has oppressed and marginalized them in their most personal and private moments. For example, in a post titled “To My Children on Mother’s Day, From Your Mother With Chronic Illness,” Kathy Soppet writes about her desires to be a “perfect mother;” “I pictured being Martha Stewart in the kitchen, having a house worthy of Better Homes and Garden magazine, and endless days of laughter, fireflies, and fun […] I wanted to be as close to perfection as possible,” she states. In these lines, the dominant discourse is in full view; this type of racialized, classed, and ableist idea of motherhood is perfection, reinforcing Buchanan’s idea of the god term. And perfection is associated with expertly planned and cooked meals, and a spotless home with all the right decor. Children are laughing and fireflies finish off the picture-perfect scene with their captivating glow. Soppet expresses that she “wanted to fulfill these goals more than anything.” Yet, the question begs to be asked, are these goals the author’s goals or what society convinces women to desire when they become mothers? Other authors shared similar feelings of guilt about who they could not be. Cindy G. even titled her post “Sorry Kids, I Wish You Had a Better Mom.” Karen Habashi started her letter to her daughter with a series of anaphoric sentences that all began with “I’m sorry.” The letter states, I’m sorry for the times I said I couldn’t play and for all the playdates you wanted to have that I couldn’t arrange. I’m sorry for the fear I see in your eyes every time I say I need to go to the hospital […] I’m sorry for this 
disappointment when we don’t celebrate a holiday or an event like other families do…(Habashi).  

In this apology letter, the mother’s discourse displays incredible guilt and grief about who she is as well as what she is not. Motherhood becomes a curated Pinterest board that does not allow for any other reality to fit in, and as a result of this discourse, these mothers feel guilty about realities they have no control over and would never have chosen themselves. However, in these open letter blog posts, mothers quite literally create their own safe space where they can dwell on the consequences of these cultural ideals and eventually push back on them.

Metaphorical notions of motherhood often depict mothers as having tentacle-like arms, with each arm holding a different item for a task that needs to be completed. For example, a mother may be depicted as simultaneously cooking, caring for an infant, cleaning, working at a computer, reading, walking a dog, and running errands. Such narratives depict motherhood as a series of endless tasks, but the dangerous assumption is that while this is difficult, it can and should be done. However, for chronically ill mothers, even entertaining the idea that this juggling act could be maintained is enough to send them into a flare; nevertheless, the guilt about not being able to perform these tasks becomes all consuming and the authors express shame about not being a mother who has it “all together.” 

The authors also create a space for counter narratives by openly acknowledging how cultural ideals affect their self-worth. In a digital open letter titled “Read This if You’re a Mom with Lupus Who is Struggling Today,” Britt Clark states that we live “in a world where we are constantly given titles and labels, [and] they often seem to be one or the other.” Here, Clark recognizes that motherhood has no room for chronic illness; she is too busy completing tasks to accommodate dealing with an illness. However, for chronically ill mothers, their illness forces them to make cuts about what can be accomplished. Clark’s letter goes on to illustrate what these cuts look like: “[I push to be] a ‘normal’ mom–you know, the ones who actually take showers and drive to a full-time job they are passionate about. Like the ones who are able to make it to every school program and PTO meeting. The ones who always seem to have their shit together” (Clark). Through a creative rhetorical construction, the author simultaneously states what she should be doing while also illustrating what she is unable to accomplish due to her illness. Thus, by her own definition, because she cannot do all of these things, she does not have her “shit together” and is not a “normal mom.” These digital open letters present these cultural ideals as having specific and immutable criteria, and these criteria make “motherhood” seem near impossible to achieve. However, by the authors saying that these are ideals they struggle to live up to, they create a safe space where other mothers are allowed to acknowledge their own feelings about the dominant cultural narratives; they are allowed a space to grieve if they need to, but eventually, this space provides the means by which they can begin to form their own counter narratives and acknowledge that ideals do not represent everyone’s reality. Once this understanding takes root, there is room for other types of mothers to be heard and acknowledged, which helps to shed that sense of guilt and start a community. 

Epistolary Style as a Rhetorical, Community-Building Strategy

Although motherhood may seem narrowly defined, writing blog posts in an epistolary style serves as a way to reinvent definitions and realities, and its use can be seen as a rhetorical strategy that invites any persons involved to share in this reimagining. This reimagination of the epistolary genre has the power to transform not only the author but also the reader. As a genre, digital open letters have the power to create a unique rhetorical environment before one even begins to read its contents. A personal salutation creates an immediate sense of intimacy, a sense that what is written is explicitly and intentionally for the reader and no one else (e.g. “Dear Lupus mom;” “Dear Anxious Mama”). Letters also convey a sense of the personal in that they are typically associated with thoughts not intended for a mass audience. 

For mothers with chronic illness, this style allows them to reimagine their situations because so much of what they experience is dealt with on a deeply personal level. For example, in Britt Clark’s letter she writes, “…I see you fighting the good fight. Every. Single. Day.” The use of personal pronouns is key to establishing this intimacy and connection, and every digital open letter used them in their messages, thus allowing readers to see the letters as directly addressed to them and their realities. Through this small but significant rhetorical choice, the readers can feel acknowledged and understood. This reader experience would not happen without the personal and invitational nature of the epistolary style. Through this style, readers are invited to share in the author’s experience without the need to do anything more than listen. This style serves as a rhetorical outlet for the authors to illustrate the value of their experience and allows them the opportunity to harness a self-determination that is falsely denied by the dominant discourse. In the epistolary rhetorical space, authors are allowed to make those decisions about who they are as both persons with illness and mothers. Reconciling the two identities is now possible because agency is handed back to them once they become rhetors.    

Furthermore, because the Web 2.0 affords interaction, these digital open letters help to create a more robust sense of community-building and help others to feel understood, even if the person who understands is a stranger. Through the use of a digital open letter, the authors’ writing has a far-reaching audience, and their writing can be viewed as having a newfound intentionality; in addition to providing a space for the author’s own catharsis, their work seeks that anonymous Internet user/reader who needs the support and encouragement that these digital open letters provide. In the responses to these digital open letters is where the community-building activity can be seen. Eight of the twelve digital open letters used in this essay had conversations between the authors and readers. 

In these conversations, there were three main community-building elements: 1) gratitude, 2) encouragement, and 3) shared story-telling. These elements illustrate that these digital open letters have impact on the chronic illness community in positive ways and some mothers even expressed having a shift in perspective after reading them. For example, one mother commented: “I have concerns about trying to become a mom because of epilepsy and some other health issues but now I feel better after reading your article” (Nesmith). Comments such as these illustrate the community-building power that digital open letters can achieve, which is in line with Lopez’s perspective on women’s blogging communities: “…when participating in blogrolling and commenting on one another’s posts, women are validating each other, displaying active listening and defining their own communities” (742). Part of what defines this active participation is the way that The Mighty labels these comments; in their health community, comments are labeled as “conversations.” Using “conversations” instead of “comments” conveys a more intimate atmosphere and may help to encourage readers to participate.

The overarching community-building element in the comments on these digital open letters was gratitude. Of the thirty-five comments on these letters, fifteen comments expressed gratitude in some form, whether it was through a comment such as “thank you for writing this” (Karp) or “you don’t know how much I needed those words” (Stonefield). Notably, the expressions of gratitude were usually followed up with either a comment that expressed a sense of community, such as “[this post] made me not feel so alone” (Karp). The comments also invited readers to encourage one another; encouragement, the second community-building element, was not unidirectional (author to reader); at times, the readers encouraged the authors, illustrating a connectedness in this community that is not hierarchical; mothers connect through shared difficulty, which can create an immediate sense of familiarity. The third element of community-building found in the open letters, and perhaps the most notable, is the idea of shared story-telling. Readers used the “conversation” part of the digital open letter to tell their own stories in this space. These stories often reveal struggles with judgmental family and friends or their own guilt about not being able to do what they think they should be doing as mothers. For example, one reader wrote: “it’s so hard to face the disappointment of my children and sometimes friends who I’ve made plans with—when I am too sick to carry them through” (Habashi). Thus, through the medium of the digital open letters, this community is afforded a space where they can express their frustrations, concerns, and worries; more importantly, though, it is a space where they can find others like themselves. This detail alone can be very meaningful, as one reader noted: “…knowing I’m not the only one who [loses] it and it will be better one day gives me hope that I won’t always be like this” (Rose). For chronically ill mothers, a sense of hope through shared community can mean the difference between living in constant guilt and being empowered. 

Challenging Discourses, Reconciling Demands

Although many of the authors of these digital open letters acknowledge the guilt and grief that go along with being a chronically ill mother, most of them chose to end their letters with statements that challenged dominant discourse, specifically the discourse that deemed them unfit or not good enough; the choice to end their letters this way connects their writing with counter narrative method/ology, which aims to debunk stock stories through authentic, first-hand narratives and experiences. One way the digital open letters challenge the dominant discourse is through the use of metaphors that illustrate them as actively working against an oppressive force. For example, Desiree Fortin described her days as being “in the trenches” and signed her letter in the following manner: “Sincerely, I’m in the trenches, too.” The use of language that illustrates a challenge helps to confront the dominant discourse by reframing the daily experiences of chronically ill mothers; every day, they are pushing their physical and mental limitations to meet domestic and professional responsibilities. 

Chronic illness is only stable in its chronicity, but not in any other way. Symptoms flare up, new symptoms arise, or medications may have side effects. For these women, using language that captures mental and physical struggle is a rhetorical strategy to help readers understand how they feel and help other women like them acknowledge that their situation is no easy task. In this way, their digital open letters function as a counter narrative to the idea that these mothers are simply too lazy or unwilling to do more. One author writes, “There will be so many times you feel like you’ve failed, but in the eyes, heart and mind of your child, you’re [a] supermom” (Urquhart). Kelli Rose states,No matter what society says, you are a fantastic mother because you are resilient. You are strong. You are fierce. […] Just because some days are 
harder for you doesn’t mean you aren’t trying your best. It means you put forth more effort to make your days better. You, my friend, are a superhero (Rose).   

In these examples, the weighty opinions of others are substituted for self-love and the love from their children. They suggest that, to these mothers, their efforts do not go unnoticed or unappreciated and a more nuanced view of motherhood emerges. This view emphasizes the power of a mother to identify and define her agency within her unique reality and not through a lens that holds no regard for her differences. 

This power is further exemplified by the authors who chose to reframe their illness experience as not debilitating but empowering. Take, for example, the following statement: “I have several chronic illnesses [and] each illness has shaped who I have become today…and I am phenomenal, and so are you!” (Nesmith). Another author goes on to state that dealing with illness has taught her to “focus more on love than longevity, and more on feelings than frequency” (Soppet). Viewed from this perspective, these women can be seen as having a deeper appreciation for the life they have been given; although it is a demanding life, it is a life that also forces a pause for reflection, and with the right perspective, the authors argue that this reflection is one that illustrates them as a “good mother” because their heart is in the right place. Power flows not from how much a mother can accomplish but from how much love is sown. Often, the authors noted that despite their lack of confidence in mothering abilities, their children often proved them wrong, as their sons and daughters frequently demonstrated a developed sense of care and empathy that is most likely the result of the mother’s state. Nesmith writes, “us chronically ill moms have what it takes to raise amazing people who will bring brilliantly caring hearts to our world” (Nesmith). The dominant discourse surrounding motherhood deals with appearances; good mothers look a certain way; they do certain things. However, the development of a child’s moral virtue lies deeper than any number of playdates or outings; the counter narrative here is that chronically ill mothers have the ideal circumstances for raising children who approach the world with a developed sense of care that can more easily come about through this unique experience.                                                     

The fatigue I felt was so deep I could feel it in my bones. My muscles ached and my head spun with brain fog. This was a full-on flare. All I could do was lay in bed. “Mommy’s too tired to play today,” “please ask your father,” and “just give me five minutes, girls” were the phrases I muttered. I laid in the bed, frustrated. Only time helps with flares, and no amount of medication relieves these episodes. Prostrated on the bed, I wished for time to quickly pass. My eyes dozed in and out of sleep. Then, I felt a soft nudge on my head. My youngest daughter came into the room with her colorful unicorn pillow. “Here, Mom.” I gently lifted my head and rested it on the pillow. “Thank you,” I replied, overwhelmed by the gesture. A few minutes later, my oldest daughter came in with her favorite blanket. “You can sleep with this, Mom.” As I hugged her, I felt the tears coming. My children saw me in need and did what they could do to help. Their gestures might have seemed small, but to me they were exactly what I needed that day. Perhaps I am doing a better job with them than I thought.

Conclusion

This study expands existing mommy blog scholarship by focusing on how mothers with chronic illness use digital open letters as a medium to understand and redefine their world. The findings illustrate that for marginalized communities, digital open letters written as counter narratives have the potential to heal and create communities that challenge dominant discourses. It also illustrates the power of writing and rhetorical strategy to help authors and readers create new realities for themselves. Through these digital open letters, chronically ill mothers can now focus on mothering instead of “motherhood” (a concept conceived of and perpetuated by patriarchal norms), empowering them to live on their terms. Building on rhetorical and disability scholarship, these digital open letters illustrate how rhetoric both affects and is used by the marginalized communities in order to achieve outcomes that progress justice movements. In line with Hedva’s thoughts on disability justice, this movement in the community of chronically ill mothers begins with the self, specifically how self-perception and self-care either perpetuate oppressive norms or confront them head on. In these digital open letters, mothers use the power of writing to create a cultural-rhetorical transformation that begins at the most grassroots level: in an individual’s sense of self. 

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About the Author

Cristina De León-Menjivar is a first-generation scholar and PhD candidate in the Department of English at Old Dominion University. As a chronically ill mother herself, she is invested in pursuing research that works towards bettering health and medical communication for all persons and communities. Her work has also appeared in Hispanic Health Care International.

Acknowledgments

I would like to thank the faculty at the Department of English at Old Dominion University, especially Dr. Rosaleen Keefe, my wonderful advisor and mentor, and Dr. Ruth Osorio, as this work began as a project for her feminist rhetoric course. Thank you to the anonymous reviewers, constellations editors, and Dr. Sharon Yam for the feedback and encouragement. I also extend my love and gratitude to my husband, daughters, and mother—their unconditional support of me and my work are what keep me going.  

Production Credits

Managing editor: Alexis McGee

Copyedited by: Yasmine Anderson 

Posted by: Shannon Seidel

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Reviewers: Sharon Yam and Anonymous

Editor-in-chief: Alexandra Hidalgo