The Invisible Kingdom: Reimagining Chronic Illness

Chapter 19 opens with a conversation between O’Rourke and her friend about why suffering is so difficult for others to recognize. They land on the idea that the energy required in recognizing another’s suffering is draining to the witness if they cannot find a solution. Despite the difficulty of this dynamic, O’Rourke claims that we need a restorative approach to healing within the medical system that will recognize suffering even if there is no clear answer. She then visits David Cutler, an economist at Harvard to discuss the difficulties of chronic-illness care. Cutler explains that doctors are not trained to coordinate care in a way that would help patients manage their health more holistically. O’Rourke writes about the Autoimmunity Institute, which aspires to offer in-depth, well-managed care for patients with autoimmune disease, and highlights other new technologies and approaches as well.

O’Rourke then narrates the ways in which the global COVID pandemic has forced a paradigm shift in how we think about chronic illnesses. Looked at with hope, the response of the medical field to those with long COVID suggests that these changes might also benefit those who have other types of contested illness. She praises Mount Sinai’s Center for Post-COVID Care as a place that pioneered the commitment to investigating long COVID and began providing collaborative care between specialists to help patients understand how COVID damages their bodies. Some preliminary evidence reveals that long COVID is a result of an immune reaction released by the virus, but at the writing of O’Rourke’s memoir, conflicting theories have yet to be resolved and her chief concern is that the lack of tidy classification for long-COVID patients will cause most doctors to reject these patients’ inner experiences of their illness. She argues that a holistic model of care should be offered to all autoimmune patients.

The final chapter of the book opens with a discussion of another cultural narrative about what illness means. O’Rourke describes the idea that illness might, even in all its suffering, invite a spiritual knowledge that transforms the person with the illness. She cites a play by Susan Sontag, Alice in Bed, in which Alice James, who has a chronic illness, is encouraged to “want” her way to health (i.e., to let her desire for health be the motive force in creating that health for herself). This type of response puts the burden of healing solely on the patient and reiterates the Judeo-Christian value of human pain. O’Rourke asserts that there is a fine line between trying to find something good in the experience of illness and lying about the pain of one’s suffering. O’Rourke asks herself whether she has gained anything positive from her illness. The ongoing nature of her illness denies her story a neat, tidy ending. She names all her diseases, and says they’re mostly manageable, but whatever moments of wisdom or perspective have been gained, she clearly wishes that she had been spared the experience of chronic illness entirely.

She writes, then, about the nature of the story of someone experiencing illness. Arthur Frank names three types of narratives of illness: restitution narratives, chaos narratives, and quest narratives. In the first, the sickness is bearable because the people who are ill will get better. In the second, the sickness is anti-narrative, because there are no answers. The final narrative, the quest, is a story where the patient has been able to create some meaning from her illness. O’Rourke explains that the more she speaks to people with illnesses, the more it becomes clear that finding meaning in the illness is a sort of moral requirement instilled in them by society. She writes about her own affinity for quest narratives as a child, like King Arthur’s Round Table. The lack of an easy ending to the discovery of the Grail was dissatisfying to her as a child, but now as a sick person, she has become a new kind of reader who understands that stories are not quests, and that illness is simply a type of chaos.

O’Rourke closes the chapter and the book by returning to a feeling she had when she was at her worst—the conviction that her illness would never fully abate. It did, though, and so she can now tell the story of her darkest moments. However, the conception of illness as a quest, though, disrupts the otherwise linear life that she yearns to achieve, for this quest has no conclusion, and O’Rourke makes it clear that she cannot reassure her readers. Instead, she closes by acknowledging that the US medical system has failed her and urges readers to embrace self-advocacy to effect positive changes in that system. The book closes with an image of her baby, R, and that his being real grounds her in the continued desire to thrive and live. The final image is that of illness, like an open window, allowing anything to climb into her at any time.