The Invisible Kingdom: Reimagining Chronic Illness

Chapter 14 begins by chronicling the winter of 2013, a period of the lowest point of O’Rourke’s illness, in which she experiences a strange “blankness,” as though her very self is being annihilated and disappearing. During the winter, she experiences depression and days of brain-fog in which she feels as though her real self is trying to break free of the forces inhabiting her bodies. She feels like a ghost. She and Jim fight over money issues, and although he understands that something is physically wrong with her, he sees her actions as irrational. After the resolution of the fight, O’Rourke is committed to taking more risks in her treatment. On the dubious advice of an integrative doctor whom she had seen before, Dr. G, O’Rourke undergoes ozone and ultraviolet light therapy, in which the blood is withdrawn, exposed to UV light and infused with molecular oxygen, and then returned to her body. She admits that both the setting of his office and the sense of his character give her pause, and that she would not have trusted him in a less vulnerable moment. She does feel better for some time, but then later a nurse tells her what Dr. G did not: that the treatment carries considerable risks.

In the last section of the chapter, O’Rourke’s depression makes even her favorite poetry feel remote. She begins deleting her writing and assigning beneficiaries to her financial accounts. Her resilience continued to wear itself down over time. She then writes about a time later when she is pregnant and gets a serious rash over her body. This, she claims, is not even close to the worst she experiences with her health, but it is visible and therefore she receives the most empathy.

At the close of the chapter, O’Rourke meets up with a friend and realizes just how much life she feels like she is missing out on. She decides to pursue Lyme again, despite the risk of being labeled a “Lyme loony.”

Chapter 15 begins with O’Rourke traveling to see Dr. Horowitz, who is an expert on Lyme disease. She brings with her a stack of lab results and after an examination, Dr. H explains that the mixed test results occur because the presence of Lyme disease is ascertained by searching for specific antibodies that are produced in response to bacteria, but because the production of antibodies can take time, early detection of the disease can be difficult. To further complicate matters, sometimes antibodies last for years after treatment, which makes it hard to tell if an infection has resolved. He also explains that Lyme bacteria often come in different strains, which might explain O’Rourke’s varied symptoms.

O’Rourke then begins to explain the history of Lyme disease, beginning with its discovery in Lyme, Connecticut in the mid-1970s. After further research, a medical entomologist named Willy Burgdorfer identified the bacterium that causes Lyme. The bacteria in question were initially treated with antibiotics like any other infectious disease. When these treatments didn’t work for many, patients emerged as activists fighting for new cures. O’Rourke then documents the arguments among the Infectious Diseases Society of America that sought to discredit patients who believed themselves to be afflicted with Lyme for many years. The stand-off, she explains, is that the American medical establishment cannot agree on the criteria for diagnosing Lyme disease and debate whether or not it can be considered chronic.

After beginning her doses of doxycycline as prescribed by Dr. Horowitz, O’Rourke feels much worse before she feels better. A later diagnosis of POTS (postural orthostatic tachycardia syndrome) explains her habitual dizziness and fainting, and O’Rourke finally feels a relief and validation she had been seeking for years, and despite vast improvement in her health, she knows that she still has a long way to go before reaching anything approaching a cure. O’Rourke then explains new research that suggests the interplay of the infection and the immune system in Lyme patients, and at the close of the chapter, O’Rourke visits with Allen Steere, a Lyme expert who has long suggested that many patients are incorrectly diagnosed and don’t have Lyme in the first place. He blames other infectious agents and claims it’s likely the antibiotics are working because they’re killing something other than Lyme. O’Rourke points to the ways Steere had been fooled by Lyme earlier, thinking it was viral rather than bacterial, and points to the ways he, like many doctors, might feel threatened by a problem he cannot solve.

She concludes by grieving for the time and sense of self she has lost in the battle against chronic illness.