The Invisible Kingdom: Reimagining Chronic Illness

by Meghan O'Rourke

Unease, dis-ease: Which is which, and does one’s unease (or dis-ease) come before the disease or follow upon the pathological processes?

I don’t think it is the case that my mother’s death caused my illness. In fact, I know it is not. But I also wonder about the ways that the disappearance of my mother, that bulwark, led to an absence, an ellipsis, into which both dis-ease and disease rushed, unbalancing an equilibrium that had more or less existed until that point. Or think of it this way: I was more run-down when she died than I had ever been. Maybe exhaustion, combined with the virus I caught, was the tipping point, one hit too many to my immune system, after which whatever was already going on snowballed unstoppably downward.

The entanglement of self and sickness became a mirrored distortion, a fun house I feared I was never going to escape, when I realized that I couldn’t tell whether my “self” was attacking “myself” without “my” knowledge or influence. Was it true that every time I got stressed about my work or had a fight with Jim “I” was making “myself” sick? Who was “I” and who was “myself,” and which had intention, and which didn’t? Did intention matter?

Chronic stress releases continual jolts of stress hormones, which can raise blood pressure and cause cardiovascular disease, leading to a hardening of the arteries. It makes gut-related illnesses like irritable bowel syndrome worse. And it can lead to dysfunction in cortisol production.

Recently, scientists discovered that they had overlooked a key step in the stress response: in the first half hour or so following a stressor, the body’s immune system becomes more active. This makes evolutionary sense—the body is preparing for a wound or possible infection, say. Then, over the following hours, the body typically tries to return immune activity to a baseline, by releasing steroid hormones to inhibit white blood cell production. But some people get stuck in the heightened

the human body responds to anticipated and imagined stress as if it is lived stress. This capacity for imagining and anticipating makes stress damaging. Our subconscious takes our conscious fears seriously, and adjusts our biology accordingly.

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.

socioeconomic disadvantages and structural insecurity lead to telomere shortening—a key measure of aging—and a higher allostatic load (wear and tear caused by stress).

The state of a person’s immune system is, among other things, a reflection of that person’s socioeconomic status and their history as a citizen of a flawed polis, I now understood.

Positive thinking in the face of illness purports to give us back a modicum of control. It suggests coherence in a chaotic world. It makes willpower and mindset meaningful again—even though willpower is one of the things that disease can prove to be a false (or at least overdetermined) construct.

the American affection for positive thinking reflects a desire for illness stories to have neat resolutions and uplifting moral outcomes.

numerous studies, including a follow-up he conducted in 2007, have failed to replicate his results or show a connection between optimism and disease outcomes in cancer.

“there may be an intimate and virtually unexplored relationship between the central nervous system and immunologic processes.”

thoughts are, in a sense, somatic. The question is what we do with that idea, and how we use it in the face of all that is uncertain about our health and our bodies.

If you sometimes feel good, it means you don’t have the disease all the time. Why is that, and how can you get to inhabit that ‘not all the time’ more frequently?”

clarified that if thoughts have any role in modulating illness, it isn’t a simple one.

evidence shows that when you give patients a diagnosis, they tend to feel sicker or more vulnerable than they did without one.

It’s scary; I want the dignity of that reality.”

To have the dignity of one’s reality: this, I realized, was why I worked so hard to find language to tell my story. I wanted to show how the emphasis on the psychological nature of chronic illness in a culture that pathologizes the failure to “overcome” robbed people of grace, while instructing them to suffer their illness with grace.

You have a feeling something in your body is trying to defeat you, that something inside you wants you dead.

Even as changes in the climate and in land use are contributing to a dramatic rise in Lyme and other tick-borne diseases, the American medical establishment remains entrenched in a struggle over who can be said to have Lyme disease and whether it can become chronic—and if so, why.

I had come to understand that there would not be one explanation, one label, one diagnosis for what was happening to me—I knew enough to know that living in uncertainty was my lot. The years of being ill had taught me that each diagnosis—Hashimoto’s, endometriosis, Lyme, POTS, and later Ehlers-Danlos syndrome—came with its own separate set of symptoms.

tick-borne illnesses—much as COVID-19 now seems to—trigger a vastly different array of immune responses in people.

One way or another, new research suggests, an intricate interplay of the infection and the immune system is at work in patients who do not get better, just as it now seems to be at work in long COVID.

Little webs of feeling that I’d ignored for years shivered in the breeze of my wide-open mind.

Mounting evidence suggests that the microbiome is crucial to health and that damage to it can trigger everything from autoimmune disease to cancerous malignancies, as well as play a role in depression and anxiety.

bacteria can be both harmful and good for us, and that the absence of balance among them can lead to illness, such as Crohn’s or ulcerative colitis.

Over time, antibiotics and a Western diet high in processed foods have led to the extinction of whole species of microbiota in many people’s guts.

Gut bacteria influence serotonin and other neurotransmitters, researchers have found, raising questions about the role of our microbiome in predisposing us to a variety of illnesses. (Ninety percent of serotonin is made in the gut.)

effects of an FMT are so strong that some gastroenterologists believe we should start treating certain infections and digestive disorders by trying to rebuild the gut wall with FMTs instead of using antibiotics, even if FMTs are slower to take effect.

“What if our immune system is partially a system by which we interact with our microbiome? What if,” he said suddenly, waggling his fingers, “the microbacteria are interlocutors for the immune system? They are our interlocutors, and the conversation has gone awry.”

Perhaps all along my idea of failure had been wrong. Perhaps my body had been working hard to keep me as well as it could despite a serious, life-altering infection, and I needed to find a new story about it. A story that allowed for the contingency of identity, of health, of hope. One that saw survival of any kind as a form of strength. What I had experienced was life itself, the body straining to survive despite the odds stacked against it.

just because a symptom is common—and subjective—does not mean that a patient cannot tell the difference between a normal version of it and a pathological one, the way we experience the difference in severity between the common cold and the flu.

In this sense, PTLDS, autoimmunity, ME/CFS, and long COVID are diseases of our era, conditions that illuminate the need for a shift in medical thinking, from the model of the specific disease entity with a clear-cut solution to the messy reality shaped by both infection and genetics and our whole social history, a reality that no one yet fully understands.

My quest to find answers about what was happening in my body had taken me far away from standard medical appointments and deep into meditations on what a life should be like, how wounds could be healed, and what to do when they can’t be.

It defines health as “a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity.”

“In palliative care, healing is thought of as a sense of wholeness. It is not being cured necessarily, but feeling whole.” A patient is healed, that is, not solely by steroids or antibiotics, but also by nature, thrilling conversation, touch, empathy—being made to feel whole, rather than distraught, as she exits doctors’ appointments.

My time as a person living with an unidentified illness tore off the private mask that isolated me. It left a reminder in me that the bell tolls for all of us, that my predicament is your predicament, and your predicament mine, because I am implicated in it.

“No man is an island, entire of itself; every man is a piece of the continent, a part of the main. . . . Any man’s death diminishes me, because I am involved in mankind, and therefore never send to know for whom the bell tolls; it tolls for thee.”

My life might still be circumscribed, and ringed by sometimes debilitating fatigue and pain, but I was acutely aware of how lucky I was to have recovered even this much. I hoped that it would stay this way long enough for my kids to remember me as a mother who once could run along the beach with them.

We need a restorative whole-being approach that goes beyond what the current medical system typically offers the chronically ill patient. And we also need structural reform and a commitment to research.

“The industry I often compare chronic disease to is financial planning. People pay Fidelity and Vanguard a lot of money. What they’re paying them for is the convenience of making it easy to save for retirement. But no one has really invented that for health planning in cases like chronic illness, because it turns out that financial planning is easier,” he said.

A lot of people with autoimmune diseases would like to see the establishment of clinical autoimmune centers, where a single doctor would coordinate a patient’s care, as at a cancer center.

Clinicians need to tailor care to patients in ways that “our health care system is not set up for,” as Dayna McCarthy put it.

In the American pop spiritual approach, illness is a vehicle for self-improvement and hard-won acceptance, a line of thinking the sick patient quickly finds everywhere.

There is a razor-thin line between trying to find something usefully redemptive in illness and lying to ourselves about the nature of suffering. Until we mourn what is lost in illness—and until we have a medical community that takes seriously the suffering of patients—we should not celebrate what is gained in it.

It is difficult to look at the shadows of physical suffering clearly, because to do so, I know, is to risk inviting depression, or a terrifying apprehension that the world is made of pain.

three kinds of illness stories: restitution narratives, chaos narratives, and quest narratives.

Chronic illness, though, is hard to map onto a restitution narrative. It is almost by definition never a story of overcoming, because the disease’s trajectory never fully resolves.

the chaos narrative. As Frank notes, “events are told as the storyteller experiences life: without sequence or discernable causality.”