The Invisible Kingdom: Reimagining Chronic Illness

Meghan O’Rourke is a bestselling author, poet, and editor whose second memoir, The Invisible Kingdom: Reimagining Chronic Illness, explores the mysterious rise of autoimmune disease and chronic illness in the United States. During her career as a journalist and teacher, she experienced her first symptoms of chronic illness. When her description of her array of disappearing, reappearing, and changing symptoms was met with skepticism from medical professionals, she began investigating her own illness and critiquing the systems that made it difficult for her to receive proper care. Her book not only documents her own experience of chronic illness, but offers a vision of how quality care might be provided for those who experience undiagnosed chronic illness and autoimmune disease.

This guide uses the 2022 eBook edition of The Invisible Kingdom published by Riverhead Books.

Summary

In the Introduction to The Invisible Kingdom, O’Rourke sets the stage for her narrative by beginning with personal anecdotes. She sees a mysterious symptom arise on her arm in 2012 with no explanation for its appearance, and she soon realizes that unlike most diseases, there is no clear beginning, end, or name for what she is experiencing. She explains that the unknowability can be one of the most painful parts of chronic illness, and that the impetus for her book is to describe something that, though invisible, is increasingly common. O’Rourke claims that her experience of illness brings to light the ways in which the American medical system and American culture at large are dismissive of “untidy” and “unknowable” narratives, and thus her book transcends the boundaries of a mere memoir to become a project designed to challenge the institutions that resist and erase the experiences of those with chronic illnesses.

The opening chapters of The Invisible Kingdom shift backward and forward in time, explaining O’Rourke’s first symptoms and then their reoccurrence, as well as establishing her family background and her dual careers as a writer and teacher. The chronology of her recurring symptoms tends to blur as she goes from doctor to doctor with little clarity as to what’s happening to her. In Chapter 2, she finally receives a vague diagnosis of “autoimmune disorder” and comes to understand that researchers believe these types of disorders to be a combination of both genes and environment. Thus, her illness does not follow the dominant medical ideology that relies on the idea that “bacteria would affect everyone pretty much the same way” (79). Early on, she establishes that everyone’s experience of illness varies, which is a reality that poses a conceptual challenge for conventional medicine. This challenge is reinforced by her own narration, which often follows a pattern of receiving a diagnosis, some type of treatment, some relief, and a reoccurrence of physical symptoms.

As O’Rourke becomes increasingly isolated by her symptoms, which include such varied experiences as extreme fatigue, fainting, fogginess, and the sensation of electric shocks, she grows more and more disillusioned by conventional medicine and turns instead to a more integrative approach. This type of care offers her new frameworks for understanding the body and how illness might be approached. However, despite the relief she feels when integrative care practitioners treat her body holistically and with careful attention to balance, this type of care isn’t covered by insurance and comes at a great financial cost. Additionally, alternative medicine encourages the patient to enact a sort of “self-management project” of diet, supplements, and self-care which can be exhausting and time-consuming. And, most importantly, this sort of mindset continually puts the responsibility on patients instead of on the people and systems meant to support them.

Throughout Part 1, O’Rourke dissects the various aspects of her experience, including the recurring theme of listening to doctors who pathologize her symptoms. She then connects her experience to the age-old trend of health practitioners who disbelieve and dismiss women’s experiences of illness. In this moment and many others, O’Rourke uses research to highlight the origins of the flaws that plague the American medical system and to advocate for change. She also expands this critique to explore the environmental factors that contribute to the types of stress that exacerbate autoimmune diseases, using the individual experience of her own illness to represent the concerns of a large, invisible collective deserving of recognition, attention, and most importantly, proper care.

Part 2 of The Invisible Kingdom expands the theme of individual versus collective responsibility in the context of illness by examining the metaphors commonly used to articulate the very concept of illness. Of particular interest to O’Rourke is the idea that autoimmunity is in some sense an example of the self attacking the self. While technically accurate, this idea of autoimmunity often results in patients feeling as though their illness is somehow theirs to bear and resolve on their own. O’Rourke experiences this dynamic both internally and externally as the people around her imply that her own stress levels or lack of positive thinking are affecting her illness for the worse. In the absence of a clear diagnosis, O’Rourke offers both rigorous research and anecdotal evidence to examine the validity of these suggestions. In the chapter, “Positive Thinking,” for instance, O’Rourke interviews researchers and specialists who have completed thorough investigations into how positive thinking affects illness. She interrogates the research from a personal and cultural lens, noting the benefits of thinking positively, while also continually arguing for the need to stop invalidating the symptoms of people with illnesses.

In Chapter 13, O’Rourke finally receives a diagnosis of Lyme disease and simultaneously rejoices at the clarity of having a name for her suffering, while pondering the uncertainties and unknowns surrounding her now-identified illness. Because of the many gaps in the research of Lyme disease, many patients have suffered as result of the disagreements in the medical community on how best to treat the disease. O’Rourke does finally pursue treatment, which requires both antibiotics and an expensive integrative medicine treatment designed to heal her gut. However, although O’Rourke does finally attain several elusive diagnoses to define her years of suffering, her health issues will never be fully resolved.

The final section of The Invisible Kingdom offers an exploration of what “healing” and “health” might mean for O’Rourke moving forward. She advocates for a new type of care for people with chronic illnesses and for those with autoimmunity—a modality that considers the health of the whole person and embraces the uncertainty inherent in having an unnamable illness. O’Rourke is careful to insist that her narrative will not end tidily, writing, “This was an important event, and it is one that keeps on happening in my life. It moves in spiral time around the linear life I sometimes think I live” (556).