editor’s book pick: The Invisible Kingdom: Reimagining Chronic Illness

Chronic illness and the quest narrative: a timely review of Meghan O’Rourke’s NYT bestselling account

By Mike Gosalia

Meghan O’Rourke’s “The Invisible Kingdom” is a timely survey of chronic illness—illnesses that are on the rise throughout the world, autoimmune diseases, and Long COVID being examples—and what it means to live with them. Misdiagnosed with an autoimmune disease (an abnormal immune response to healthy tissue) in 2012, O’Rourke’s search for acknowledgment and empathy from a medical industry that tends to stigmatize and psychologize ailments it cannot quickly understand led her on a whirlwind journey of medical trial and error that lasted nearly five years. Eventually, O’Rourke was correctly diagnosed with late-stage Lyme disease and prescribed a regimen of antibiotics that rid her of the tick-borne bacteria that causes the illness. While some symptoms remained, they became increasingly manageable, allowing O’Rourke to live normally again.

In this powerful and lucidly written account of suffering, research, and finally, recovery, O’Rourke rekindles the words of ancient Greek physician Hippocrates who once said, “It is more important to know what sort of person has a disease than to know what sort of disease a person has.” (36) This instruction is important even today because despite advances in modern medical technology, health care’s tendency to specialize and compartmentalize treatment has led instead to a “bureaucratic remove from the patient.” (61) This lack of holistic treatment is a detriment to those who suffer from chronic illness, O’Rourke contends, because the nature of these illnesses resists simple explanation. With chronic illness, there is often no easy cure or solution to a medley of incongruous and hard-to-define symptoms. Seeing that such illnesses resist formulaic treatment, it is crucial that the doctor be able to understand and get to know the patient if the correct line of handling is to emerge. The onus is on the patient’s explanation of their symptoms, not the array of inconclusive tests the physician can employ. If the doctor cannot listen and take the time to ask the right questions and assess behavioral modifications (which can be challenging, time-consuming work), the disease can go undetected and untreated for years, as was the case with O’Rourke. She writes, “When we suffer, we want recognition. Where science is silent, narrative creeps in.” (229)

As someone who suffers from a chronic illness, O’Rourke’s sheer determination and force of will to find a cure for her disease fascinated me. During the worst moments of my mental health illness, when my world had been turned upside down and I hardly knew what was happening to me, I turned to acceptance of the disease in order to recover. In other words, putting a name on what ailed me seemed less important than simply trying to live with it. Lucky for me, once I was able to shoulder my suffering, recovery seemed to follow. O’Rourke, however, never blindly accepted the uncertainty of what ailed her. She writes:

For this is the strange thing about a vulnerability that remains unseen by others, an illness that is unacknowledged by society. It is the sick person whose worldview warps, the wounded one who absorbs the idea that the most indelible aspect of her present condition is in fact a defect, a distortion of her own making (63).

Furthermore, O’Rourke’s insecurity at not being able to pinpoint her illness seemed to bring on anxiety that only made things worse—“The illness responded to stress, but at the same time the illness was a state of perpetual stress, weighing on me like a boulder. Which is one reason people hunger for a clear diagnosis.” (153)

O’Rourke’s sheer level of discomfort must be understood if her journey is to have meaning. She writes of her pain, “Pain was an empire of its own, well defended against language’s forays against it.” (51) O’Rourke did not feel as if she could explain her suffering. For her and many others like her, this is frustrating and debilitating. She was lost within her illness’s grasp:

But it’s one thing to have the symptoms for a day, or even a week. Suffered daily, they take on a meaning beyond the pain, like being shadowed by a specter. You have a feeling something in your body is trying to defeat you, that something inside you wants you dead. One bright morning I woke and felt joy—the fog is not there!—only for it to jostle through me when I sat up (171).

In Part Three (Healing), O’Rourke describes three types of narratives patients with chronic (or serious) illness tell in order to grasp and understand the changes their disease has brought upon them. These are restitution narrative, chaos narrative, and quest narrative. In restitution narrative, the sick believe they will get better, so they are more able to bear their suffering. O’Rourke observes that this is the most common type of story in today’s late-capitalist society. Then there is the chaos narrative, which “is almost never a story of overcoming, because the disease’s trajectory never fully resolves.” (260) People with chronic illness often fall into this category. It is a category where stories don’t always make sense, where there is little causality. It’s a frustrating place to be, for the patient and the physician who is trying to understand her patient’s suffering. The final mode of understanding is the quest narrative in which the patient has been able to synthesize her experience into something meaningful, usually because she has to some extent recovered. O’Rourke writes of the quest journey:

It entails a journey that forces the quester to be present in ways he or she might prefer not to be, and it does not necessarily involve triumph—although some part of me had always thought it did. Rather, it involves discovery. The quest turns the quester from a bad reader of circumstance, prone to sentimental expectations, to a good reader, alert to life’s unseen dimensions. If the object of your illness quest is simply to get better, you are not yet deep on your quest (262).

O’Rourke’s book would not have been so powerful if she hadn’t spent the time to describe her recovery in terms of gaining deeper knowledge. Because, after all, what is living if not a state of continual accruement of knowledge, of discovery? If we are to understand the world through a spiritual lens, acceptance of one’s illness is not too different from developing a deeper understanding of the universe. Who truly understands fate and the will of a sometimes seemingly negligent higher power? O’Rourke writes, “It was a painful calm: a sense of how little control we have over the course of our lives and an understanding that the deepest meanings come from our contact with that portal between control and submission,” (265-6) or in other words, between refuting and acceptance.

Perhaps learning to suffer lightly, even from the gravest of illnesses, is a clue into how we can manage them (and thereby overcome them). This, at least, was my experience with chronic illness—I have schizoaffective disorder—which I was able to live with through acceptance and psychiatric treatment. It’s a long, winding, and often treacherous road for those who suffer with long-term disease, and though the path can be dark, like so many things in life, there can be hope at the end of the tunnel if our perceptions of an often-mysterious world will allow for it. After all, who truly knows what lies beyond our suffering? 

The Invisible Kingdom by Meghan O’Rourke