The Invisible Kingdom: Reimagining Chronic Illness

Nonfiction | Autobiography / Memoir | Adult | Published in 2022

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Summary

Background

Chapter Summaries & Analyses

Part 1, Introduction-Chapter 2

Part 1, Chapters 3-5

Part 1, Chapters 6-9

Part 2, Chapters 10-12

Part 2, Chapters 13-15

Part 2, Chapters 16-17

Part 3, Chapters 18-20

Key Figures

Themes

Index of Terms

Important Quotes

Essay Topics

Tools

Beta

Discussion Questions

Key Figures

Meghan O’Rourke

Although The Invisible Kingdom does not have characters in the way a work of fiction might, Meghan O’Rourke nonetheless features herself as the protagonist in her own life struggle and occupies multiple roles in the structure of the plot, for she is both the subject of her story and its omniscient narrator. As a result of the nature of her experience, O’Rourke’s role as narrator is also that of researcher and detective. Early in the text, she describes herself as a “co-author” to her illness, which the narrative reveals by recounting the ways in which the state of her body dictates the role she embodies at a given time. Sometimes, O’Rourke is the authoritative, clear-eyed writer who is piecing together complex research. At other times, she leans on anecdote and metaphorical writing to give readers access to her personal experience of being ill. When O’Rourke is at her worst, she describes losing a sense of self in such a way she cannot even fulfill her role as writer, and in these moments, the varying roles of her character collide and are dictated by illness itself. Thus, O’Rourke deliberately creates an awareness as to how the very creation of the book is a part of her own character development.

O’Rourke makes many references throughout the text about the ways her illness defies narrative tidiness, and in fact concludes the book with a discussion of narrative strategies, including the “quest narrative.” In a fictional quest narrative, a character states a goal, endures a journey, has successes and frustrations, and achieves the intended goal. While O’Rourke’s illness does not have a tidy “end” and no goal is met in relation to healing, her goal from the introduction onward is to find language for an experience that otherwise remains invisible, and in this, she does succeed. In this way, her own character development and “quest” require the participation of the reader as witness, and the success of her goal depends upon the world outside of the book, as clear in her call to action in the final line of the introduction: “The words that follow are dedicated to those whom, thus far, our society has failed, and continues to fail, in the hope that change may come” (29). O’Rourke has her own qualities and life experience, certainly, but through her book’s message, she strives to engage with an invisible audience of people who are suffering in similar ways. While playing with the tropes of fiction, O’Rourke makes clear that her own testimony as a patient, writer, and human has a purpose beyond the satisfaction of a tidy, clearly defined fictional narrative.

Jim

Jim is Meghan O’Rourke’s husband and the closest witness to her illness. Despite living together and sharing a life with O’Rourke, Jim cannot completely mitigate the extreme isolation and loneliness that O’Rourke experiences due to chronic illness. He becomes a symbol, as well, for the ways in which illness impacts all aspects of a patient’s home life. Their relationship serves as a means for O’Rourke to discuss logistical aspects like the financial impact of her treatment. Because O’Rourke never fully develops Jim as a character in the narrative, Jim’s peripheral presence in her quest creates the impression that no matter how close someone is, a patient really is isolated by the experience of chronic illness.

The difficulty that Jim has in witnessing O’Rourke’s struggles offers a helpful representation for the doubts and difficulties that other patients may be experiencing. There are repeated descriptions of symptoms most readers have not experienced and can’t understand, and the cyclical, recurring nature of them can feel exhausting. That a reader might not understand the nature of “fatigue” for instance, is mirrored by Jim’s inability to comprehend O’Rourke’s experience. When Jim’s own father falls ill and then dies, this event offers an opportunity for O’Rourke to emphasize her own awareness of the weight her illness can have on those around her, especially when those people are holding their own griefs and pains.

The US Medical System

If this book were to have a villain, it would likely be the American medical system. On her journey toward understanding what is happening to her body and narrating her experience into something that others can comprehend and witness, O’Rourke is repeatedly met by the resistance of the American medical system to acknowledging the reality of her illness. She describes “becom[ing] something less than a person on entering a doctor’s office” (133), and this dehumanizing experience is one that O’Rourke must resist throughout the text. The challenges to her sense of self that her illness brings her are only compounded by those of the American medical system. Of the many ways she characterizes this system, some of its central problems are the ways its doctors are incentivized via insurance to prioritize providing solutions instead of embracing the unknown. This means that patients who have difficult-to-categorize symptoms are often dismissed. Additionally, doctors are isolated from one another and labor under the intense demand to see as many patients as possible, resulting in a system that O’Rourke describes as “technologically proficient but emotionally deficient” (132).

The American medical system’s inability to care for patients with chronic illnesses is compounded when coupled with the overt racism and unconscious biases of some hospitals and practices toward people of color, women, and transgender patients. O’Rourke’s characterization of the American medical system also results in an exploration of the ways her own identity—class, gender, and race—impacts her experience as a person with a chronic illness. She creates a sense that as difficult as her experience has been, it is much worse for those who belong to a less privileged segment of society. Despite her critiques of the systemic failures of American medicine, O’Rourke does express empathy and understanding for the plight of the doctors who are trapped within a broken system. In this way, she effectively characterizes the system as a set of historical, bureaucratic, and cultural mechanisms that have a dehumanizing effect on everyone who must operate within such limited parameters.

Authors of Illness Narratives

A key element to O’Rourke’s ability to narrate her own experience of illness is her dialogue with other writers writing about illness. By frequently citing the works of Susan Sontag, Virginia Woolf, Alice James, and John Keats, among others, O’Rourke effectively characterizes herself as both a reader and a writer and increases the authority of her own testimony. O’Rourke’s life as a reader provides her access to writing that effectively makes her feel less alone. In a chapter called “Downward Spiral,” O’Rourke finds a letter written by John Keats about “negative capability. She writes: “I was grateful for his words because they reminded me that I wasn’t living off the known map of human experience” (278). When she reads the works of someone like Keats, O’Rourke is able to find not only comfort in her state of perceived solitude, but also a feeling of being seen. She knows she is not the only one who has experienced such pain, and understands that her invisibility is not real but cultivated by a culture that seeks to make her invisible. Connecting with the ideas of someone like Keats, who experience chronic illness for the majority of his short life, lends a broader sense of authority to her experience and situates her narrative as one that might be able to work against the dominant culture.