The Invisible Kingdom: Reimagining Chronic Illness. Megan O’Rourke, New York, NY: Riverhead Books, 2022. 336 pages, $18 paperback.
Review by Cristina De León-Menjivar (she/her/ella)
Old Dominion University
Date posted: June 2023
De Leon-Menjivar, Christina. (2023) “Book review: The Invisible Kingdom: Reimagining Chronic Illness,” Rhetoric of Health & Medicine: Vol. 6 : Iss. 3.
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Using her own experiences battling contested, chronic illnesses, Meghan O’Rourke’s The Invisible Kingdom: Reimagining Chronic Illness (New York Times Bestseller, Most Anticipated Book of 2022 by Vogue, Oprah Daily, Lithub and Kirkus and a Best Nonfiction Book of 2022 by Esquire) is an exploration of the personal, cultural, and social consequences of chronic illness. While the text is mostly autoethnographic, she uses her experiences to examine the medical realities as well as the philosophical implications of the disease experience; she considers both how patients navigate these conditions and how providers from various branches of medicine address (or do not address) complex cases, while arguing that illness is never individual. O’Rourke explains that after spending years knowing that something was wrong but unable to find answers, she was eventually diagnosed with Hashimoto’s, endometriosis, Lyme, POTS, and Ehlers-Danlos syndrome. These conditions contributed to a complex web of mysterious symptoms that came and went with unpredictably varied intensity. Although O’Rourke teaches writing at the university level, her book is not one that is aimed exclusively at academics: it works to educate persons both in and out of the medical community about the issues surrounding autoimmunity and chronic, contested conditions. The book is a work of advocacy that highlights this community’s issues through a multifaceted lens.
While the book is framed with her own personal story, O’Rourke weaves socio-cultural and medical conversations regarding autoimmunity throughout the work, educating the reader on the history of and issues surrounding autoimmunity and contested conditions. Rhetoricians of health and medicine would be interested in many of the topics she examines in the book, such as autoimmunity as metaphor, the doctor-patient relationship, tensions between allopathic and complementary and alternative medicine, and the cultural narratives we create regarding the chronic illness experience. Her writing weaves personal story, research, and interviews with top doctors and health officials to consider the wider socio-cultural consequences of dismissing chronically ill patients and leaving them to figure things out for themselves. Notably, O’Rourke also considers how the mystery surrounding long-COVID offers the opportunity to highlight and potentially help existing issues surrounding autoimmunity and chronic conditions.
O’Rourke divides her book into three sections with small chapters within those sections. Section one is titled “Obstacles” and provides an autoethnographic account of the emergence of her symptoms and how they began to affect her personal and professional life. In this section, she examines how established norms in the medical system contributed to the complexity of her medical issues. For example, she addresses how contemporary doctor-patient relationships in allopathic medicine do not mesh well with the realities of autoimmune disease. Autoimmune diseases are usually chronic and require years of management; however, modern physicians “don’t like to manage; they like to fix,” she argues (p. 63). Adding to this issue is what O’Rourke terms “the woman problem.” Using her own research, she states that 90% of women with an autoimmune disease had been told to seek treatment for mental health issues and that nothing was physically wrong with them (p. 103). Themes and topics such as these are generally known and understood by the rhetoric of health and medicine (RHM) community, but what makes O’Rourke’s work stand out is how she weaves historical and contemporary research with her own disease experience, adding a contemplative––and, at times, gut-wrenching––view of the reality that these socio-cultural norms and practices help create.
Section two is titled “Mysteries” and describes how her conditions continued to elude herself and her providers. She describes how to jump from provider to provider, desperately trying to find some solution for her ailments and even agreeing to questionable treatments such as UV and ozone therapy. Her efforts eventually take a physical and mental toll on her, causing disturbance in her work and rifts in her relationship with her partner. In this section, O’Rourke also begins to take a more philosophical approach to describing her disease experience, and the section begins with a look at how the concept of autoimmunity serves as a metaphor. Her chapter titled “Autoimmunity as Metaphor” will be of particular interest to scholars who wish to understand how the psychological and cultural implications of autoimmunity as a concept fails patients because it undeservedly ascribes these failings as individual, when they are in fact social. Her research and meditations on autoimmunity results in a comprehensive theory about why this issue continues to evade understanding. She follows up this discussion with a look at how the mind/body debate in chronic illness exacerbates patients’ symptoms and cultural experiences with disease. O’Rourke does not subscribe to Cartesian dualism, understanding that the mind and body are intricately connected and stress can contribute to immune responses (for better or worse). However, for people navigating chronic illness this cycle can result in an endless loop, and as O’Rourke’s partner astutely notices, “this seems like one of the hardest things about being sick […] being sick makes you stressed. But being stressed makes you sicker” (pp. 152-153). In the “Positive Thinking” chapter, O’Rourke argues that what complicates this cycle is that patients are often told to weather their symptoms with grace, yet to demand this of people robs patients of grace, as the advice fails to acknowledge the psychological implications of a chronic disease experience.
The third section is titled “Healing,” and it details how O’Rourke was finally able to manage her conditions and provides an argument for solutions to help better treat and manage chronically ill patients. Part of her solutions argument highlights innovative medical centers specially designed for managing autoimmune diseases, such as the Allegheny Health Network (AHN) Autoimmunity Institute. This institute opened in 2018 and boasts coordinated care with same-day, in-depth appointments with doctors across seventeen disciplines. In this center, O’Rourke notes, physicians spend hours talking with patients and with fellow physicians to share insights and communicate treatment plans. The institute also performs research to help create better diagnostic tools and criteria. Centers such as these, O’Rourke states, are what autoimmune patients need. The essential idea is using the model of a cancer center, but for the chronically ill. While these kinds of centers may seem like a far-off fantasy, the AHN is not the only center of its kind. There are similar centers in Israel, such as Sheba Medical Center’s Center for Autoimmune Diseases, and Mount Sinai’s Center for Post-COVID Care; the issue remains in getting medical leaders and groups to understand the importance, value, and approaches of such centers.
As stated earlier, the discussion surrounding autoimmunity is a major theme in the book, but there are several chapters that are dedicated to defining and exploring what autoimmunity means both in a scientific sense, as well as in a philosophical sense. Few medical mysteries are as stubborn as discovering the cause of autoimmune disorders, and the issue continues to grow. O’Rourke writes that autoimmune conditions affect up to 50 million people in the United States alone (p. 5). She explores this topic by addressing how the immune system is the “nexus of radical interconnection” (p. 9), including social relations, food and chemicals, poverty, racism, and trauma. Using a collection of historical and contemporary medical research, O’Rourke describes how autoimmune disease tends to escape the grasp of modern western medicine, and in part, blames the idea of a hyper-scientific focus that distills medical practice into a basic concept: “find the microbe and kill it” (p. 38). This move, she writes, moved medicine away from man and towards disease.
O’Rourke ends the book with a discussion that appeals directly to the work of RHM scholars: the narratives surrounding chronic illness. Her last chapter, titled “The Wisdom Narrative,” scrutinizes how our culture reframes chronic illness experiences for people so that their experience is more palatable to everyone else. This chapter complements the earlier “Positive Thinking” chapter, and she writes that “onlookers often respond to the experience of chronically ill people by focusing on the supposed positives, presumably because it makes the pain of witness bearable” (p. 258). Through this rhetorical strategy, she argues, we ignore the realities of chronic illness, and it becomes yet another way these persons are silenced and dismissed. And while O’Rourke acknowledges that she is more knowledgeable as a result of her experience, what must be foregrounded in these conversations is the loss that comes with that knowledge. This new wisdom, she writes, “is knowledge coupled with the wound that comes from encountering doom” (p. 264). Acknowledging the losses that come with chronic illness is to acknowledge the person behind the mysterious symptoms; and it becomes a way our culture can slowly repair the cultural narratives that perpetuate the suffering of the chronically ill both in and outside of the clinic. As a whole, O’Rourke’s work is a complementary text that can support the work of RHM scholars by providing a first-hand account of the chronic illness experience through a lens that acknowledges the many cultural aspects and historical-social factors that influence this difficult journey.
Notes on Contributor
Cristina De León-Menjivar is a Ph.D. candidate in the Department of English at Old Dominion University. Her research focuses on the rhetoric of chronic illness, as well as ancient medicine and patient/provider discourse. Her work has appeared in Hispanic Healthcare International and Constellations: A Cultural Rhetorics Publishing Space.