The Invisible Kingdom: Reimagining Chronic Illness

“As Susan Sontag pointedly observes in Illness as Metaphor, illnesses we don’t understand are frequently viewed as manifestations of inner states. The less we understand about a disease or a symptom, the more we psychologize, and often stigmatize, it.”

Citing Susan Sontag in her introduction, O’Rourke places herself in conversation with an author who writes often of illness and emphasizes the connection between Sontag and the title of the book. This quotation initiates the theme present throughout the book of how a lack of systemic knowledge of a disease leads to the punishment of the patient.

“It took years before I realized that the illness as not just my own; the silence around suffering was our society's pathology.”

This quotation marks an experience of agency and transformation in the narrative that O’Rourke creates around her own illness. Instead of allowing society’s doubts of her symptoms and experience to dominate her actions, she instead transforms the narrative claim that society itself has the pathology, not patients with chronic illnesses whom its prejudices serve to stigmatize.

“My experience of being ill led me to see that our bodies may feel autonomous, but we all live in the nexus of radical interconnection. Our bodies are always in communication with other bodies: our immune system is responsive not only to collective health policies but also to the emotions and affects of others.”

A key issue that O’Rourke names about the American medical system is the society-wide tendency to isolate the patient and abandon them to struggle with their experience of illness on their own, without support. Thus, her own illness warps her own sense of her body and herself, and she comes to see herself as something separate from the world rather than being constantly intertwined with others. By reclaiming the sense of her body as something interconnected, O’Rourke deliberately envisions a new means for treating chronic illness patients, triumphantly writing her way free of her own loneliness.

“To have a poorly understood disease is to be brought up against every flaw in the U.S. health care system; to collide with the structural problems of a late-capitalist society that values productivity more than health; and to confront the philosophical problem of conveying an experience that lacks an accepted framework.”

This succinct quotation articulates the ways in which patients who have unknown diseases must fight not only their illness, but also the flaws of the US healthcare system and the costs of a capitalistic society that ignores the ravages of long-term illness and demands constant “busy-ness” and productivity from the members of society regardless of the toll that may take on their health and well-being. Any sense of “uncertainty,” therefore, has no place in the contemporary world.

“I got used to being uncomfortable, and I internalized the idea that my mentioning my discomfort made me fussy—‘The princess and the pea,’ my mother once said, in irritation, making it clear that I was demanding too much when I complained.”

Here, O’Rourke cites one of the many ways she internalized her experience with consideration for others’ experience of her illness. Connecting her comfort to a comment her mother made during childhood is a means of demonstrating how ideas of our body—its comfort, its needs, and its health—are taught to us subliminally.

“These hours of aspirational longing, I now more forgivingly think, were a response to the illness. I was trying to manifest the person I wanted to be: a person who could enjoy her life, her home, a person who wasn’t about to die or disappear. The part of me that spent hours looking at home design sites and clothing on sale was the part of me that wanted to live and didn’t know how else to express it. The worse I felt, the less I could do what I wanted (work, think), the more I searched for beauty and for pleasure.”

Part 1 explores O’Rourke’s feelings of loneliness and isolation in depth, and here she articulates the ways that those hours were not necessarily a waste, but instead an expression of her longing. She is rewriting a story about a time when all she could do was browse the internet as a way of seeking anything that would help her regain a sense of hope for the future.

“As Susan Block, a Harvard professor of psychiatry and medicine, and a pioneer of palliative care, told me, ‘The tendency in many parts of medicine is, if we can’t measure it, it doesn’t exist, or the patient is cuckoo.”

This quotation points to the conceptual challenge that O’Rourke explores in modern medicine: her assertion that medical practitioners must get comfortable with what they do not know in order to offer the best care to their patients. Susan Block supports O’Rourke’s argument, as well, that when doctors do not know something, they have a tendency to pathologize or ignore the patient’s testimony of their illness.

“There is a loneliness to illness, a child's desire to be pitied and seen. But it is precisely this recognition that is elusive. How can you explain and identify your condition if not one has any grasp of what it is you suffer from, and the symptoms wax and wane? How do you describe a disease that's not always there?”

Throughout the book, O’Rourke seeks to articulate the experience of her illness to have her experience recognized by those around her. However, the contradiction of her situation is that she is often trying to describe something that defies description; its elusive “disappearing, reappearing” behavior frustrates her attempts to declare its reality and leads to her overwhelming feelings of loneliness. She emphasizes her resulting vulnerability by comparing her experience to that of a child’s desire for understanding.

“But the fatigue of physical dysfunction, I came to recognize, is as different from normal sleep deprivation as COVID-19 is from the common cold. It was not caused by needing sleep, I thought, but by my body’s cellular conviction that it needed to conserve energy in order to fix whatever was wrong. The feeling erased my will, the sense of identity that drives most of us. The worst part of my fatigue was the loss of an intact sense of self.”

O’Rourke experiences fatigue throughout the book, and often names how profoundly different fatigue is from just “being tired.” She uses the comparison between the common cold and COVID-19 to explain the dramatic difference in degree between the two concepts, and her descriptions serve to articulate that minimizing someone’s experience of fatigue is to minimize real and tangible suffering. She declares that fatigue is such a severe affliction that it cannot be described by mere tiredness but is elevated to a loss of self. In a world that sees “fatigue” and “tiredness” as synonyms, such an emphatic explanation becomes necessary to facilitate readers’ understanding of the true severity of this common symptom of chronic illness.

“‘To have pain is to have certainty; to hear about pain is to have doubt.’ The same was true of all my symptoms, none of which could be seen. In those months I was lonely in a way I never had been before. I could taste the solitude of the human body like brine in my mouth, a taste that never left me.”

The experience of loneliness for O’Rourke is in many ways created by her pain—invisible to others, but profoundly felt by her. The first part of this quotation names the difficulty of explaining pain to others and having them immediately doubt it. Often, O’Rourke uses the imagery of the ocean, here in the form of brine, to describe feeling out of control.

“I know many people who are suspicious of diagnoses—they think of them as labels that reduce or stigmatize. I knew, already, that a diagnosis was not going to answer all my questions. But I craved a diagnosis because it is a form of understanding.”

The tension between the relief and fear of getting a diagnosis is relevant throughout O’Rourke’s narrative. She seeks some sort of knowledge of her condition, but also worries that the naming of her condition might erase the complexity of her experience. The search for a “form of understanding” is a concern of the plot of the book and also the book itself—by writing her narrative, O’Rourke forges new understanding to combat the invisibility of her condition.

“Americans’ embrace of the ‘natural approach’ is a rebuke to the dominant social structures of our time—Big Pharma, Big Medicine, Big Tech. But in a crucial way it is also in thrall to one of the most powerful contemporary Western delusions: namely, the idea that we can control the outcomes of our lives, in this case through self-purification.”

O’Rourke vacillates between the effectiveness of conventional and alternative medicinal practices. This critique offers something different, in that we see that even the adherence to alternative medicine is rooted in a Western cultural delusion that we can control our bodies by purifying them. O’Rourke’s narrative is designed to question the underlying assumptions whose logical flaws plague both conventional Western medicine and the alternative modalities that seek to supplant it. Her quest to question and examine everything allows her to arrive at a more balanced understanding of both illness and treatment methods.

“You cannot muscle your way to health when you are chronically ill. Rather, one way of coming to terms with an amorphous systemic disease is recognizing that you are sick, that the illness will come and go, and that it is not the kind of illness you can conquer.”

Much of the book focuses on how O’Rourke and the people and systems around her deal with the uncertainty of her illness. This quotation reflects her resolve to accept the fact that she will not be able to just solve or conquer this—it will instead be a coming, a going, and a life of repetition.

“On my message boards a recurrent theme was having a partner who didn’t help, who didn’t get it, who even judged and blamed. Even partners who did help often couldn’t feel the wave of need engulfing the ill person. And my god, the need. It felt shameful to need other people so much.”

One of the key characters in O’Rourke’s book is her husband, Jim. This quotation encapsulates her practice of reaching out to invisible allies via message boards in order to comprehend and combat the paradoxical isolations she feels in the presence of the one who is closest to her in life: her husband. Her shame at needing so much support from him thus manifests in her attempts to seek support from others beyond the immediate circle of their home.

“And so it is a truth universally acknowledged that a young woman in possession of vague symptoms like fatigue and pain will be in search of a doctor who believes she is actually sick.”

O’Rourke explores the history of systemic oppression of the American medical system based on both gender and race. Here, she names the deep, long history of a medical system that treats a woman’s symptoms as psychological rather than signs of illness.

“Ethical loneliness is what happens when wrongs are compounded by going cruelly unacknowledged.”

Loneliness is a theme of O’Rourke’s experience throughout the book, and she offers the phrase “ethical loneliness” to contextualize the experience of loneliness with a society that is failing those who are suffering. This term allows O’Rourke to relieve the person suffering of the burden of curing their own loneliness, instead focusing on the larger responsibility of society to acknowledge the invisible suffering of its citizens with chronic illnesses.

“Autoimmunity is internalized by patients as an opportunity for the ultimate self-management project. But in fact it is a manifestation of a flawed collective project. If it is an indictment of anything, it is an indictment not of our personhood but of our impulse to see social problems as being about our personhood, instead of a consequence of our collective shortcomings as co-citizens of this place and time.”

O’Rourke frequently identifies the ways in which society’s concepts of illness are internalized by patients, and here she articulates the idea of autoimmunity as a “self-management project.” Instead, though, she claims that autoimmunity is about a collective failure of social problems that have resulted in the rise of autoimmune diseases.

“This seems like one of the hardest things about being sick in the way you’re sick: being sick makes you stressed. But being stressed makes you sicker.”

Jim, O’Rourke’s husband, says this to her at the close of a chapter exploring the role of stress in chronic illness. Her experience is often riddled with these sorts of contradictions—the idea that doing one thing will simultaneously harm the patient as well as heal. Here, she explores the idea that stress induces illness and illness induces stress, a vicious cycle that leads to the repetitive experience of having a chronic illness.

“I understood certain aspects of madness better, the nearly rote repetitions that come when meaning has faltered on the inside.”

Using the outdated term “madness” to describe a decline in mental health, O’Rourke relates the intense psychological struggles that she encountered as a result of her illness and blames the flawed American medical system for the lack of support she experiences: a dynamic that causes her to internalize her uncertainty to the point that her illness unravels her innate sense of self.

“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.”

The end of the book considers how readers want to feel after reading a book like this. O’Rourke emphasizes that any desire to feel good or positive about someone’s experience of illness is only an attempt to lesson one’s discomfort at the act of witnessing such suffering, and as such, she refuses to ameliorate the emotional experience of healthy readers, for that very discomfort is the emotion that occurs when invisible struggles become visible and acknowledged within the wider context of society.

“There is a razor-thin line between trying to find something usefully redemptive in illness and lying to ourselves about the nature of suffering. Until we mourn what is lost in illness—and until we have a medical community that takes seriously the suffering of patients—we should not celebrate what is gained in it.”

Here, O’Rourke responds to the idea of the experience of illness possessing an innate “bright side.” The desire for illness to contain something redemptive, though, can lead to minimizing the experience of the one suffering. O’Rourke emphasizes here that centering the suffering is the first step to acknowledging it and understanding it.

“The more I talked to sick people, the more I found that what is most disturbing for many of us is that grace has become a kind of moral requirement in sickness: If you must be ill, at least be improved by your illness. And yet conditions under which grace can emerge may not be present.”

The book often explores what is expected of people who are sick by those who are well. Here, in the close of the book, O’Rourke names the expectation of “grace” on behalf of those who are sick, asserting that patients with chronic illnesses must be open to improvement and transformation at the hands of their illness, which is really, according to O’Rourke, about making the “healthy” person feel better.

“‘It’s bearable, and yet I cannot bear it,’ wrote Alphonse Daudet of living with syphilis. I had revised his line in my head: ‘It is unbearable—and yet I bear it.’”

Throughout the book, O’Rourke invites dialogue with other writers who describe long-term illness. She does this to situate her own writing within a larger literary tradition, and to use other’s testimony to shape her own narrative. Here, she engages in a larger conversation about her illness even as she articulates the details of her own arduous path back to health.