The Invisible Kingdom: Reimagining Chronic Illness

In the epigraph of The Invisible Kingdom, O’Rourke offers two quotations that helpfully frame the purpose and form of the book to follow. The first, from Susan Sontag, reads: “Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick” and the second, from Alasdair MacIntyre, reads: “We are never more (and sometimes less) than the co-authors of our own narratives” (7). The first quote speaks to the title of O’Rourke’s book and helps to declare the relevance of this text to everyone who reads it: Regardless of their current state of health, everyone will eventually experience some form of sickness and will experience a reality that is largely invisible to the “healthy” public world (7). O’Rourke’s text envisions this kingdom for readers as something that is not “distant” but just “invisible” to those who lack personal experience with chronic illness. The second quotation offers a key to how O’Rourke perceives her own purpose when writing this text. She feels that sickness has determined much of her life, and the act of writing provides her with an opportunity to co-author her narrative.

O’Rourke actively frames her philosophical discussion of illness as a “story,” continually reinforcing the idea that the progression of a sickness is at its heart a narrative. Thus despite the complex, well-researched explanations of her experiences, she seeks to situate the story of her own illness among those of other literary figures who have documented their difficulties in life. Her opening sentence, for instance, claims that her story begins “the way Hemingway says you go broke: ‘gradually and then suddenly’” (12). What follows this opening paragraph is just that—a documentation of both the gradual nature of the onset of her illness and then the experiences that felt sudden. O’Rourke thus articulates that she, as simultaneous writer and subject, will author her story using a narrative form that is true to her experience, justifying her stylistic decision to jump around in her chronology and to juxtapose relatively recent symptoms with others that she experienced in the 1990s. Seeking to understand her own experience, she writes, “Trapped in a body that wasn’t working, I embarked on a complicated and obsessive quest for answers” (14), and her narrative structure does much the same, evolving from a simple recounting of her lived experience to become a comprehensive documentation of research she acquires on her larger “quest for answers” (14) to the mystery of widespread autoimmune disease, especially in a post-COVID world.

Near the end of the introduction, O’Rourke offers a clear purpose for her book that marries this need to contextualize her own experience as a sick person, while also using her role as “writer” to give her life a clearer narrative shape. She asserts:

[This book] aims to find language for a lived experience that in some ways resists description, to show how our culture tends to psychologize diseases it doesn’t yet understand, and to explain how and why our medical system […] is ill-equipped to handle the steep rise in this kind of chronic illness (21).

The word “find” in this statement of purpose echoes the earlier characterization of her personal story as a “quest,” for this memoir is not necessarily meant to explain authoritatively, but rather to attempt to narrate an experience that cannot be fully articulated. In essence, she charges her audience to join her quest and figure out the answers along with her.

O’Rourke models this “quest” by blending a documentation of her symptoms throughout the past two decades with her attempts to find answers. Over and over, O’Rourke experiences resistance from doctors who are supposed to be able to explain what is happening inside of her body. For instance, after receiving her first clear diagnosis, she is given what is explained as a “cure” and expresses a naive relief that reflects her initial trust in “the way medicine worked in the modern world,” in which “tests told you what was wrong, and doctors told you how to fix it” (37). The ironic tone of this quotation suggests, however, that the medicine will not actually “work” in the way O’Rourke is promised. Instead of being able to trust the medicine to narrate and explain what is happening to her, O’Rourke will need to take action herself. By the end of Chapter 2, the linear solutions that modern medicine seeks to provide stand in direct contradiction of O’Rourke’s actual experience. What is to come, in both her life and the book, is thus a cyclical narrative that honors the fickle nature of her disease.