The Invisible Kingdom: Reimagining Chronic Illness

The chapter opens with the ways O’Rourke’s illness affects her relationship with her husband, Jim. Despite his acceptance of her illness and his belief in her symptoms, she feels like she wants more from the relationship, for she is caught between feeling needy and understanding the limits of what he can offer in terms of understanding. This internal conflict comes to a head when her husband’s father dies, and O’Rourke then travels to Los Angeles for a teaching fellowship while Jim stays at home to grieve his father’s passing.

Los Angeles greets O’Rourke with a sense of peace, and its culture of gluten-free restaurants and holistic philosophies supports her own personal healing methods. After a time, though, her physical symptoms return worse than before. They begin leaving marks on her legs, signs of an underlying medical condition. On her way to an appointment with a gynecologist to investigate the source of her abdominal pain, another car collides with hers in the middle of an intersection. Her pain gets worse and then subsides, and the gynecologist later guesses it to be a result of endometriosis. She reminds O’Rourke that “time [is] not on her side” and that she and Jim should be trying harder to get pregnant (91). She maintains hope about the future, even if she feels delusional.

What O’Rourke begins to feel during her time in Los Angeles is a loss of herself. Whatever surge of intensity that having a diagnosis can give to other people is an effect that O’Rourke lacks. When she prepares to leave LA, Jim comes to help her pack and then accompanies her on a road trip through the Southwest. On a short hike to see some Anasazi ruins, O’Rourke gets overheated and begins shivering uncontrollably. Back at home, she jokes to Jim that all she wants is a chip in her body that reveals to her, every day, what sort of error is happening.

O’Rourke introduces the chapter by explaining what she calls the “punitive fantasy” created by society to characterize women with illnesses as hypochondriacs, leading her to wonder if anyone will ever take her suffering seriously. Supporting her assertions with evidence that proves women to be largely ignored by the majority of medical research, she takes the medical field as a whole to task, emphasizing that research based only on males results in medical practices that blatantly ignore the potential impacts of drugs on the female body. Similarly, she states, the treatment of women who are sick is also riddled with neglect. O’Rourke cites several examples of this dynamic, particularly the overwhelming evidence that Black and Latinx women are even more severely undertreated for symptoms than white women are. The feelings that result from this experience can lead to “ethical loneliness,” a term that describes the isolation that comes from the injustice of enduring the invisibility of one’s identity group. O’Rourke speaks to a woman whose testimony of her own illness resulted in many, many doctors citing anxiety, and this antiquated notion that women simply invent their disorders has a long history, which O’Rourke goes on to describe.

The history of women’s illness as being rooted in psychological issues began in ancient Greek and Egyptian societies when they blamed the womb itself for causing illness. The focus on the uterus as the source of sickness led to the nebulous concept of “hysteria” being elevated to the status of a diagnosis. When women never managed to heal from the imaginary ravages of this ill-conceived “disease,” doctors turned to psychoanalysis and reimagined women’s physical illness as a manifestation of underlying emotional issues. Specialists like Sigmund Freud, for instance, believed that the body manifests the nature of the patient’s subconscious, and this false premise led inevitably to labeling women’s own reported experience as being something inherently imaginary. So, the more women insisted on their own version of reality, the more they were saddled with a diagnosis of invisible, repressed emotional distress. Ironically, these ideas were further solidified by second-wave white feminists who thought women’s distress was a result of their confining social positions. As a result of this historical gaslighting, when modern female patients go to the doctor and express their symptoms, they enter a space where her experience of her own body is still seen as largely psychological, and therefore easily dismissed.

At the opening of the chapter, O’Rourke begins to study the immune system with a student at Harvard and a friend who is a professor of biochemistry. She learns that the branches of the immune system are actually quite distinct and have different layers of defense. The first deploys killer cells that ingest or engulf foreign pathogens. The second layer is “acquired immunity,” which mounts a specific response to pathogens and then remembers what to do if they ever return. These adaptive immune cells are B and T cells. She learns that the immune system acts like a sort of college, where our adaptive cells learn how to focus on and respond to a specific substance. Autoimmunity and allergy both occur when these cells mistakenly identify harmless aspects of the body as threats.

O’Rourke explains that people feel sick when their immune system is responding because of an inflammatory response. Blood and specifically white blood cells rush to the site of infection and create inflammation to, in a way, set it on fire. However, when inflammation lasts for longer than it needs, it can make the body feel fatigued and sluggish. The more she learns about the immune system and autoimmune diseases, the more O’Rourke questions her own experience. One possibility is that her autoimmune disease is genetic. However, O’Rourke learns that while genetics might play a factor, autoimmune diseases are often instigated by a virus. Many viruses never go away, but instead lie latent, and as explained by Amy Proal a microbiologist, can often contribute to hard-to-diagnose and hard-to-treat autoimmune diseases. The question remains, though, as to why women are more prone to developing autoimmune diseases. O’Rourke offers some reasons, including the strength of women’s immune responses and the ways in which estrogen interacts with B and T cells. Epigenetics also examines how genetic material can change in the body during a lifetime and can trigger autoimmune dysfunction.

O’Rourke closes the chapter with a reflection on how the stresses of modern life in late-capitalism seem to cultivate the potential for illness. She writes about her life as a patient changed when she read a letter by poet John Keats in which he describes “negative capability,” or a quality of being inside of uncertainty without reaching for answers. O’Rourke is able to accept, with much grief, the reality of chronic illness and her life “living in the gap” between the known and unknown (253). At the close of the chapter, O’Rourke finally finds a doctor who will stay in this space of uncertainty with her and honor her experiences.