The Invisible Kingdom: Reimagining Chronic Illness

In Chapters 3-5, O’Rourke shifts her focus by connecting her experience of illness to the flaws of the American medical system. She explains society’s paradigm shift from defining health as an issue of holistic “balance” to seeing it as a specific problem needing to be solved, or a microbe needing to be eliminated. When narrow-minded solutions of the medical system don’t work for patients like O’Rourke whose illnesses cannot be “solved,” severe isolation and loneliness are often the result for the patient. O’Rourke juxtaposes descriptions of her own loneliness with an emerging argument that illness does not have a single solution; instead, it manifests differently in each individual body. By following this thread with her research, O’Rourke is inevitably utilizing her own biographical, lived experience to advocate for change in the American medical system at the most fundamental levels.

Without a clear diagnosis from the medical system, O’Rourke doesn’t have language for her illness that is accessible to others. She thus offers a quotation from the scholar Christina Crosby: “Whenever you offer an account of yourself to others, you labor to present yourself as coherent and worthy of recognition and attention, as I am doing right now” (107). With this quotation, O’Rourke claims her book to be a labor and acknowledgment of her own coherence, despite the ways her illness defied that experience in her recent history. A diagnosis, for O’Rourke, would provide its own narrative: a cause, a solution, and a conclusion. Lacking such linear cohesion, she must write her own narrative and glean her own meaning from the chaos of her inexplicable suffering. Near the end of Chapter 4, O’Rourke’s social isolation leads her to find solace in books, particularly narratives about illness, and uses her reading to create a map linking her own experiences to those of other writers about chronic illness, which not only builds authority for her own project, but also gives her company in her own experiences of loneliness. Books seem to say: you’re not alone, and you have the power to craft your own story.

In Chapter 5, however, O’Rourke builds a pattern of storytelling that reflects the resistance she encounters in her own quest for knowledge; thus the cycle of seeking answers, getting none, and then questioning herself mirrors the maddening circles of autoimmune patients’ real-life search for answers from a medical system that constantly fails them. She writes:

The pattern is this: A patient goes to the doctor to explain that something seems very wrong. When tests turn nothing up, the patient is told she is fine, and emerges without answers, questioning everything she thought she knew about her body and her perceptions (116).

By articulating the ways in which her own authority on the topic of her illness is subverted by the system and its representatives, both of which inevitably pathologize her experience, O’Rourke invites an inquiry into why this happens, and how the individual is left so alone at the end of a failed diagnosis.

Her narrative also refuses to flinch away from the uncomfortable truth that the outcomes of an experience of healthcare vary tremendously based on not only a person’s illness, but also their race. O’Rourke faces this issue head-on in her narrative and actively links the systemic failures of the medical system to the systemic failures of society at large in order to emphasize the ways in which the healthcare system refuses to see patients as people. However, she also maintains the balance of her narrative by refusing to adopt an “us versus them” mindset and deliberately including doctors in the long list of those who are harmed by the failures of the American medical system. In support of both doctors and the patients they strive but fail to help, she closes with this image: “Their day was full of tests to order, bureaucracy to cut through, an education that taught them not to say, ‘I don’t know what’s wrong with you.’ And so we stood together in a tiny, antiseptic room, the doctor and the patient, a world apart” (136). Thus, her conclusion emphasizes the unnatural isolation imposed upon both doctor and patient, who, were they not trapped by a broken system, would ideally function together as a team to pursue healing.