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

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Discussion Questions

Part 2, Chapters 10-12Chapter Summaries & Analyses

Part 2: “Mysteries”

Part 2, Chapter 10 Summary: “Autoimmunity as Metaphor”

Part 2 begins with an interrogation of how O’Rourke’s illness has led her to confront her own ideas of “self.” In online forums, she reads of many autoimmune patients who link their illnesses to an internal failure of the self. Since autoimmunity is characterized as the body fighting against itself, O’Rourke explains that many patients use it as an opportunity to question the nature of their internal lives, adopting faulty metaphors related to self-destruction and suicide, largely because all that mid-20th-century science can offer them is the idea that the immune system both protects against foreign invaders and tolerates the “self.” As a result of this anthropomorphizing of the immune system, O’Rourke claims that it becomes very difficult not to view autoimmune responses as a psychological metaphor: the self attacking the self. O’Rourke then invokes the idea that these metaphors work within a society that seeks to imagine the self as a project for improvement. This tendency toward self-blame causes patients to lose sight of the fact that their illness is not a problem of the self, but a problem of the collective. If autoimmune diseases are on the rise because of environmental factors, O’Rourke suggests that perhaps these illnesses are a result of society-wide failure rather than individual shortcomings.

An alternative metaphor for immunity is the “danger model,” where the immune system is thought to only react to things that are dangerous; however, even this model encourages patients to think of themselves as internally conflicted. O’Rourke claims that the link between autoimmunity and the conflicted self offers patients both an explanation for the disease and also a modicum of control: the illusion that they can “fix” themselves. However, this idea implies that people with autoimmune diseases must therefore solve their own problems and are not entitled to any societal help on this front. In a personal demonstration of this dynamic, O’Rourke reflects on the beginnings of her own illness and wonders about the links between her mother’s death and her own experience with autoimmune disease. Though she is clear that her mother’s death did not cause her illness, she does consider how her extreme exhaustion might have intermingled with the viruses that have kept her so ill. She concludes the chapter with the image of being trapped in a funhouse mirror: an entangled distortion of self and disease that she fears she may never escape.

Part 2, Chapter 11 Summary: “Mind/Body”

In Chapter 11, O’Rourke focuses largely on the role that stress plays in her life and her experience of her disease. Many of her alternative medicine practitioners often point to O’Rourke’s ambition and her taxing life as inhibitors to her healing. Accordingly, she diligently adheres to a life designed to reduce stress but feels resentful of the suggestion that she somehow caused her own illness. O’Rourke refocuses on the ways that just being alive in our contemporary world cause increased stress. She then cites the research of Hans Selye, who links animals’ stress to their susceptibility to disease and states that ongoing stress can contribute to hormonal dysregulation, ulcers, kidney disease, and high blood pressure.

Today, O’Rourke points out that the idea that chronic stress makes us sick is a widely accepted one. For some, increased and maintained stress levels get stuck in the body, causing autoimmune disorders. O’Rourke cites this as being true in her own life, asserting that stress often brings about increased symptoms. As her husband, Jim, points out, O’Rourke is trapped in a situation where stress makes her sicker, but the sickness brings about stress: a vicious cycle. At the close of the chapter, O’Rourke explains the research proving that socioeconomic disadvantages and systemic insecurities lead to a higher allostatic load among Black women: another reminder that a patient’s life story is inextricably linked with the state of their immune system.

Part 2, Chapter 12 Summary: “Positive Thinking”

In Chapter 12, O’Rourke tackles the counterpart to the idea that stress causes illness, which is the notion that positive thinking can heal. She begins by sharing her experience of reading a book by Norman Cousins and cites his success with using laughter as a means of healing. Like him, she tries watching comedies and having “fun” but realizes wryly that her way of having fun (writing) looks more like being productive. O’Rourke also cites the research of David Spiegel, a Stanford researcher whose study found that positive thinking led to longer lifespans among women with metastatic breast cancer. Positive thinking, just like controlling stress, gives patients the sense that they can control their experience. O’Rourke claims she would love that, but also is also skeptical of the idea that positive thinking can lead to absolute healing. (Studies after Spiegel’s failed to replicate his same results, suggesting that positive thinking might not actually lead to better outcomes with breast cancer.)

Positive thinking is not a method of healing that O’Rourke is ready to embrace, but her research does lead her to surprising information about the ways in which the immune system and brain are linked. She is particularly struck by Ellen Langer’s research, which demonstrates that our immune systems respond to unconscious cues that can offer potential for healing. When O’Rourke speaks with Langer, she feels resistant because she has spent so much time seeking to disentangle her mind and body. Now, someone is effectively convincing her that when we feel something in an embodied way, our body can experience measurable change.

When speaking about her own illness, O’Rourke is grateful for the ways Langer makes room for the mystery of her illness and makes clear that the role of the mind in modulating illness is not a simple one. Illness does go beyond the mind, emphasizes O’Rourke, and although drawn to the intertwined relationship between the body and mind, the chapter ends with a declaration of the fact that the insistence on pathologizing chronic illness robs those with chronic illness of grace.

Part 2, Chapters 10-12 Analysis

The title of Part 2 is “Mysteries,” which invites the reader to consider the ways in which O’Rourke becomes the detective to solve the case of her malfunctioning body, an approach that stands in opposition to her initial desire in Part 1 for traditional doctors to serve as her own personal detectives. Now, standing as the authoritative voice and the narrator of her own quest for healing, she realizes that no one has all the answers and that she must therefore continue asking questions that focus on the entanglement of “self” and sickness. In the face of an understanding of “self” deteriorated by chronic, undiagnosable illness, O’Rourke seeks to build that “self” back up through the act of writing, and thus her narration makes the invisibility of her own lived experience suddenly visible to others. In Chapter 10, O’Rourke articulates the ways autoimmunity is susceptible to metaphors, or external narratives, that cultivate a mindset of “self-management” within patients. By the end of the chapter, though, O’Rourke shifts the idea that autoimmunity is a problem of the individual to the idea that autoimmunity is a problem of the collective. In this way, despite being trapped in what she describes as a “fun house mirror” of self and illness, she implores readers to not leave her alone (278).

The first “mystery” of Part 2 is investigated in Chapter 11 and explores the relationship between stress and autoimmune disorders. Here, O’Rourke’s larger purpose is to challenge society’s common assumption that because stress causes and aggravates autoimmune diseases, the fault therefore lies with the patients themselves, who must change their lifestyles in order to cure themselves of their mysterious diseases. Thus, O’Rourke contends that connecting her illness with stress is simply a way for those without autoimmune diseases to distance themselves from her and her plight. The assumption that her experience is the result of her own mismanagement and poor life choices leaves them free to declare, “That won’t happen to me.” It’s an easy trap for a patient to fall into, because if true, it means O’Rourke’s solution is just to eliminate stress. However, the goal of approaching these “mysteries” and common misconceptions is to free herself from them by connecting her experience to the collective. She does this as well by offering a comparison between her experience and those who suffer as result of systemic racism. As she writes, “The state of a person’s immune system is, among other things, a reflection of that person’s socioeconomic status and their history as a citizen of a flawed polis” (304).

Having dealt with the problematic logic in one misconception, O’Rourke moves straight into the next and confronts the quasi-mystical idea that “positive thinking” can heal her. From the focus of these chapters, it is clear that she intends to set the record straight once and for all, and once again, O’Rourke cleverly uses the style of her writing to mirror the larger philosophical concepts that she grapples with. By taking control of her narrative, O’Rourke subtly shifts her tone to reflect the shifts in belief that her research forces her to make. For instance, she opens the chapter by scoffing at the thought of watching comedy films to laugh her way to health. However, after extensive study on the connection between the mind and the body, she finds that certain researchers have “upended [her] resistance to the idea that [mind and body] could be connected” (315). O’Rourke has thus far tried to disentangle the perceived connections between the two in order to avoid the traps of medicine and society that seek to disavow her personal experience. However, as her research increasingly lends support to the accuracy of her own narrative, she incorporates fresh nuances from her studies to adapt her approach to autoimmunity, and in doing so, creates a newer, more functional model for the ways in which patients might accept the conceptual challenge that characterizes invisible, chronic, undiagnosable illness.