Chronic Illness and Self-Care
By: Tarah Hicks
The first time I witnessed chronic illness be included in an academic conversation was in my Intro to Women’s and Gender Studies class last fall semester. It also became one of the most eye-opening experiences I have ever had (footnote: This video, which I reference many times throughout this post, was a specific turning point. It is on the longer side, but you really just need the audio. It is so important to listen to chronically ill voices. This is a place to start.). For 20 years, I have existed in this world in a chronically ill/disabled body. For 19 of those years, I shared mainstream society’s stigma of the term “disabled,” and would have never identified myself with such a term because of the negative connotation I believed it carried. For 19 years, I tolerated rampant ableism at the hands of my educators, my doctors, my family, and my friends, mostly because it had been so normalized that I failed to recognize it as anything more than a problem within myself. Such is the nature of a society governed by larger, inherently ableist systems. It was not until I took this Women’s and Gender Studies intro class that I was exposed to the histories, knowledges, and terminologies of the very community I am a part of. If I, as an actual member of this community, lacked so much of this vital knowledge, I could only assume that those outside the community knew little to nothing, and thus actively participated in perpetuating ableism on a daily basis, even if unknowingly. Since then, I have become interested in furthering my learning about chronic illness and disability, and this Gender and Environment course has given me yet another lense to look at these issues through.
In this short research summary, I explore the relationships between this course—namely “big S” science, dualities, knowledge production, and the personal as political—and chronic illness and the self-care relating to it. I begin with problematizing the healthcare and medical systems currently in place in the West, and how they specifically marginalize, dehumanize, and invalidate chronically ill individuals through dualities and injustices. From there, I explore Spoon Theory as an alternative to medical frameworks in understanding the nuances of life with chronic illness, and how online communities have been built up and branched out in part because of this theory. I look at these communities as a type of self-care, something that should not be taken lightly when viewed in the context of chronic illness, because for certain bodies, self-care is more than doing nice things for oneself; it is a type of political resistance.
Problematizing the Doctor/Patient Duality
One of the most challenging aspects for those who are chronically ill is the general invisibility of such illnesses, prompting assumptions from people—including medical professionals—that they are not sick, or “sick enough.” Because of this invisibility hurdle, chronically ill patients must rely heavily on language to get their experience across to friends and family, but also to healthcare professionals. However, this is not a simple task.
In her paper Chronic Media Worlds: Social Media and the Problem of Pain Communication on Tumblr, Gonzalez-Polledo talks of the gaps between actual pain experiences and the language we have to communicate such pain experiences, especially within the medical world. While medical definitions and linguistics have advanced to establish differences in pain quality and intensity, “there are still multiple dimensions [of chronic illness/pain] that elude standardization under current clinical protocols” (Gonzales-Polledo, 2016). Gonzales-Polledo quotes Scarry (1985) and “her enormously influential study of pain,” in which she argues that feeling pain and sensing others’ pain are worlds apart (Gonzales-Polledo, 2016). The combination of chronically ill patients lacking the medical terminology that doctors have mastered, and doctors lacking the lived experience of their patients’ pain, often leads to what Miranda Fricker has termed “epistemic injustice” (Fricker, 2007)—that is, “a wrong done to someone in their capacity as the knower” (Carel & Kidd, 2014)—for these chronically ill individuals. While doctors tend to experience “epistemic privilege” both because of their training and expertise which places greater value on doctors’ versus patients’ knowledges of illness, and because of the norms embedded in modern healthcare that “privilege certain styles of articulating testimonies, forms of evidence, [and] ways of presenting and sharing knowledge,” chronically ill patients often experience “testimonial injustice” (Carel & Kidd, 2014). This happens when their articulations of their experiences with chronic illness and pain are met with prejudice, and their “frames to communicate about illness are deemed irrelevant, time-consuming, emotional, insufficiently articulate, or unhelpful” (Carel & Kidd, 2014 and Gonzales-Polledo, 2016). Carel and Kidd’s paper provides many such examples of such injustice, with one physician even quoted as saying “‘patients say a lot of irrelevant things like ‘when I eat lettuce my elbow hurts.’ I have to listen carefully for the important stuff and ignore the rest’” (Carel & Kidd, 2014). This idea is also visited in Lydia Brown’s talk on disability justice, in which Brown explains the stereotype of a chronically ill/disabled person being viewed as inferior, as someone whom someone else knows what is best for and that knows their body and brain better than they do, as someone that is always wrong and must be doubted not only by others but by themselves (Brown, 2015).
In this way, the bodies of chronically ill patients are not only marginalized and disabled within the institutions of medicine and healthcare, but are co-opted and turned into bodies of information, into “data gathering instrument[s] [used] to gauge the viability and efficacy of care interventions” and treatment (Gonzales-Polledo, 2016).
This is where self-care comes in, in forms including new and inventive ways to articulate the nuances of life with chronic illness, and through community-building with others who have similar lived experiences of illness and pain. Because as previously discussed, experiencing pain first-hand and hearing about another’s pain are far from the same thing, “perhaps certain extreme and unique experiences cannot be communicated in any direct, propositional manner, and so are only shareable with persons whom one recognizes to have had similar experiences—those with whom one shares a standpoint or a sense of solidarity” (Carel & Kidd, 2014). Once such way of doing this is through “spoonie” culture, which has formed around the concept of the Spoon Theory by Christine Miserandino. Spoon Theory plays an extremely central role in the lives of those who are chronically ill or disabled, and serves as an exceptional jumping off point to delve into communities and self-care for those who are chronically ill, so I will begin with an in-depth explanation of Spoon Theory and its origin:
The terms spoon and Spoon Theory were initially coined in 2003 by Christine Miserandino in her essay “The Spoon Theory” on ButYouDontLookSick.com. The idea first emerged when Miserandino was in college. One night she was out at a diner with her best friend, who was very aware of her chronic illness, Lupus. Miserandino details at the beginning of her essay how this friend “came to doctors with [her]… saw [her] walk with a cane… throw up in the bathroom… [and] had seen [her] cry in pain” (Miserandino, 2003). Yet, as they were sitting in the diner, Miserandino’s friend suddenly asked her “what it felt like to have Lupus and be sick”; not what it felt like in the context of medicine and healthcare, but what it felt like specifically to Miserandino to be sick (Miserandino, 2003).
After taking a moment to think, Miserandino collected a handful of spoons from hers and other surrounding tables, handed them to her friend, and said, “‘Here you go, now you have Lupus’” (Miserandino, 2003). She explained to her friend “that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted” (Miserandino, 2003). Miserandino explains that healthy people, for the most part, start each day with an unlimited amount of possibilities, with the energy to do whatever they want, without the need to worry about their actions (Miserandino, 2003). To convey this point to her friend, Miserandino used these spoons she had gathered to represent such units of energy, because she wanted something that her friend could physically hold and that she could physically take away from her, “since most people who get sick feel a ‘loss’ of a life they once knew. If [Miserandino] was in control of taking away the spoons, then [her friend] would know what it [felt] like to have someone or something else, in this case Lupus, [be] in control” (Miserandino, 2003).
Miserandino asked her friend to count her spoons; she explained that a healthy person would start the day with an unlimited number of “spoons,” but someone with a chronic illness such as Lupus who needs to plan out their day needs to know exactly how many “spoons” they are starting out with (Miserandino, 2003). (Number of “spoons” can vary day-to-day for a single individual, but also varies across individual, illnesses, and disabilities.) Miserandino also reminded her friend to “always be conscious of how many [spoons] she had, and not to drop them because she [could] never forget she [had] Lupus” (Miserandino, 2003).
Miserandino then asked her friend to list off her tasks for the day, both complicated and simple, and explained how each would cost her at least one “spoon.” Nothing could be generalized, either; “getting ready for work” was not just one task, but many small ones that might all cost a “spoon,” such as showering or getting dressed (Miserandino, 2003). Before Miserandino’s friend had even theoretically gotten to work, she only had half of the spoons she began with. Miserandino explained that she would now need to “choose the rest of her day wisely, since when [her] ‘spoons’ [were] gone, they [were] gone” (Miserandino, 2003). Borrowing against the next day’s “spoons” was an option, but a risky one, because it meant one less “spoon” the next day, making it even more difficult to navigate than today. On top of that, Miserandino explained to her friend that someone living with a chronic illness is also living with the “looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous,” so running low on spoons is always risky, because you can never quite know when you might really need them (Miserandino, 2003). Other tasks that cost Miserandino’s friend “spoons” in her hypothetical day included skipping lunch, standing on a train, typing on her computer too long, and making dinner (Miserandino, 2003). Even though all the required tasks for the day were done by 7pm, her friend only had one “spoon” remaining. Miserandino explained that even though she had the rest of the night and could hypothetically do something fun, clean her apartment, or do chores, she could not do it all (Miserandino, 2003). In this way, being out of “spoons” is not the same as simply being exhausted or disinterested.
Miserandino wraps up her short essay on Spoon Theory with some personal and insightful thoughts, and concludes that this theory is not just good for understanding Lupus, “but anyone dealing with any disability or illness,” including both physical and mental (Miserandino, 2003).
Since The Spoon Theory (footnote: Another theory I encourage people to look into is the Sick Woman Theory was published, it has been widely used by those with all types of chronic physical and mental illnesses and disabilities. Most notably, Spoon Theory has become central to the self-care of those who are chronically ill. It is one piece—but a very importance piece—of being able to get family and friends to better understand the nuances of life with a chronic illness. More importantly, it is a cornerstone of creating communities by and for those who are chronically ill.
“Spoonies,” as people who live by the Spoon Theory often call themselves, have created online communities—often times called “spoonie culture” (Gonzales-Polledo, 2016)—through the use of various social media platforms the coalesce around a different understanding of what it means to exist in this world as chronically ill. Within the constraints of modern healthcare’s doctor/patient duality, the ill person is often the “testifier” (the source of information), and the doctor is the interpreter and actor (the one who acts on the information) (Carel & Kidd, 2014). But within online communities created by and for the chronically ill, a different world emerges. Gonzales-Polledo argues that in social media, chronic illness and pain are reframed as political issues as they are transformed from individual, disabling events that have “the capacity to put life on hold,” into “inherently social, actionable, collective issue[s]” (Gonzales-Polledo, 2016). Within these social media communities, the need to “demonstrate the ‘realness’” of illness or prove that one is “sick enough” that exists within the biomedical framework effectively disappears (Gonzales-Polledo, 2016). Essentially, the burden of trying to explain what it feels like to live with a chronic illness to someone who does not, along with the risk of others not understanding and confusing inability with laziness or disinterest, disappears. A type of safe space is created, and the social pain that all too often comes along with chronic illness (because of said confusion) but is left out of clinical assessments finds a sounding board (Hess, 2016).
Gonzales-Polledo mentions the social media blog site Tumblr specifically, explaining how it offers “new forms of affective engagement with technology [that] generate a different sense of time, agency, creativity, and belonging” (Gonzales-Polledo, 2016). Across all social media, including but not limited to Tumblr, hashtags like #spoonie and #chronicillness exist as collections of diary entry-style blog posts, memes, hospital selfies, pictures of colorful pills, and photo captions that describe daily and out-of-the-ordinary struggles of chronic illness alike (Hess, 2016). In this way, social media become health devices, where the lived experiences of the chronic ill are “normalized and made newly visible” (Gonzales-Polledo, 2016). Instead of framing chronic illness as a “catastrophic life changing event,” it is framed simply as a way of being in the world; a way of being in the world with a difference (Gonzales-Polledo, 2016). Instead of subscribing to the notion pushed by an able-bodied society that those who are chronically ill or disabled should “become as indistinguishable as possible from non-disabled people, even at the expense of their own health…, well-being…, or ability to respect themselves” (Brown, 2015) and closer to the “imagined normal” (Brown, 2015), they have created “pain worlds” (Gonzales-Polledo, 2016). In the creation of these worlds, the political capacities of social media are opened, and the act of living loudly and unapologetically as a chronically ill person becomes an act of resistance against epistemic injustice and ableism, more broadly (Gonzales-Polledo, 2016).
Self-Care as Warfare
This reframing of chronic illness as a problem of oppressive systems instead of problems with bodies is incredibly important. In their speech, Brown talks of the aforementioned idea of the “imagined normal.” This idea is rooted in our society’s systemic ableism, in the idea that there is one “normal” or “default” way of existing that includes, among other things (such as being white, straight, male, cisgender, and so on), being able-bodied (Brown, 2015). It puts the blame for illness and disability on the body of the ill or disabled person, not taking into account that it is often society that is effectively disabling the person. However, this reframing reverses this. Further, it changes the narrative from a chronic illness or disability as something inherently wrong that needs to be fixed, cured, or eliminated from bodies and from society, into simply another natural way of existing, one of many diverse lived experiences (Brown, 2015). Brown terms this idea as part of the “diversity paradigm;” that is, the idea that there is no such thing as one normal or default way of being, that there are “infinite ways of existing” and all should be treated as natural, normal, and as equally affirmed (Brown, 2015). All bodies, disabled or not, should be viewed “as equally valuable and of mattering,” as should their knowledges and their ways of sharing these knowledges (Brown, 2015).
Although this frame of chronic illness and disability is visible and present in the aforementioned “spoonie culture” and “pain worlds,” it is substantially lacking from the mainstream, and more importantly from the (ableist) systems that currently operate within society. This is where the idea of “self-care as warfare” comes in, an idea originally discussed by Audre Lorde, and re-examined by Sara Ahmed in her blog post “Selfcare as Warfare” (Ahmed, 2014). The basic premise is that the (ableist, racist, cis/hetero/sexist, and so on) systems that are in place in our society work to take care of some bodies, but not others. When the whole world is organized to promote the survival of some—from healthcare, to education, to safety—these people do not have become inventive to survive (Ahmed, 2014). Their welfare is often promoted by the world, thus not being seen as welfare at all; their benefits are given as entitlements, even as birthrights (Ahmed, 2014). In this way, “racial capitalism is a health system: a drastically unequal distribution of bodily vulnerabilities” (Ahmed, 2014). For the bodies that the systems do not actively support and care for, measures must be taken into their own hands. They must become creative and resourceful in their quests, and many turn to self-care. For these people who are not inherently cared for, self-care is more than self-indulgence; “‘it is self-preservation…, an act of political warfare’” (Ahmed, 2014). This is not simply self-care that is about “treating yourself” or tending to one’s happiness, but about “finding ways to exist in a world that is diminishing” (Ahmed, 2015). Because some bodies are not meant to survive within the systems in place, and have to insist that they matter in order to matter, their survival itself becomes a radical action. Ahmed ends her piece by defining self-care as follows:
“Self-care: that can be an act of political warfare. In directing our care towards ourselves we are redirecting care away from its proper objects, we are not caring for those we are supposed to care for; we are not caring for the bodies deemed worth caring about. And that is why in queer, feminist and anti-racist work self-care is about the creation of community, fragile communities, assembled out of the experiences of being shattered. We reassemble ourselves through the ordinary, everyday and often painstaking work of looking after ourselves; looking after each other. This is why when we have to insist, I matter, we matter, we are transforming what matters. Women’s lives matter; black lives matter; queer lives matter; disabled lives matter; trans lives matter; the poor; the elderly; the incarcerated, matter.”
With this idea of self-care as warfare in mind, it is important to see that the online communities that chronically ill and disabled people build around Spoon Theory, by and for each other, are more than just fun ways to connect on social media. They are communities that help to sustain the people through which they bring together, opening up channels for them to be humanized, to receive life-changing advice or even treatment that is not necessarily “medical” or “scientific,” and to be politically radical. The ableist systems that permeate in our healthcare systems and into our everyday social world do not work to care for them, and as a result their personal is inherently political. By creating these spaces and existing loudly and unapologetically in chronically ill bodies, they work to combat the injustices waged against them in healthcare, in their social lives, in the larger ableist systems the operate, and simply in their daily activities. By insisting that they matter, that their bodies matter as they are, that their lived experiences are specific and valid, and that their voices deserve to be heard, they are beginning transformations—transformations within their own lives, the lives of others in similar positions, and the lives of people the world over. And it is these lives, with these new understandings of knowledges and experiences, that can and will eventually transform systems. My hope in sharing this knowledge with you is that we can work together to slowly make these transformations possible, in the Clark community and beyond.
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