The Invisible Kingdom: Reimagining Chronic Illness

by Meghan O'Rourke

I came to feel (in some unarticulated way) that if I could just tell the right story about what was happening, I could make myself better.

citizens of an invisible kingdom.

My story does not progress in an orderly fashion, because the course of my illness did not; it circled and jumped and skipped.

letting go of the American ethos of overcoming and about confronting our mutual interdependence.

Our bodies are always in communication with other bodies: our immune system is responsive not only to collective health policies but also to the emotions and affects of others.

The immune-dysregulated body, therefore, is an embodiment of our porousness to one another and of all the ways the body can be affected by personal interactions, regulation of food and chemicals, the absence of universal health care, systemic racism, poverty, trauma, and more.

My body felt like a vow that had been irrevocably broken.

In autoimmunity, the immune system has stopped “tolerating” the body’s own tissue, failing to distinguish, as some immunologists tellingly put it, “self and non-self.” (“Auto,” after all, means “self.”)

it is not known in every case whether autoimmune dysfunction is the cause of the disease or a consequence of it.

a patient can have a low autoantibody count and still feel quite sick, or a high autoantibody count and feel fine. These uncertainties add to the shadowiness of the experience.

medical science’s understanding of autoimmunity lags a decade behind its understanding of cancer

there is a genetic component to autoimmune diseases; they tend to cluster in families, and many people end up with more than one such disease.

environment plays a major role: cases of autoimmune disease are rising at almost epidemic rates i...

studies of twins suggest that autoimmune diseases are one third genetic and t...

incidence of antinuclear antibodies (ANA), a common biomarker of autoimmunity, has risen significantly in certain age groups since 1991, tripling in adolescents.

scientists attribute the dramatic rise to changes in environment or lifestyle, including diet and its effect on the microbiome.

80 percent of autoimmune patients are women,

annual cost of autoimmune diseases at more than $100 billion. (This figure, many researchers think, vastly underestimates the true costs.)

often present as a systemic illness, with symptoms occurring in different parts of the body, and yet our health care system is very siloed.

autoimmune conditions could be triggered by chemical exposure and by diet

multiple autoimmune diseases—each slowly developing, in sequence, like a garden coming into terrible bloom. Is this my future? I wondered.

an immune system thrown off by toxins, infections, stress, lack of sleep, and gut problems caused by an inflammatory diet—also known as “SAD,” or the Standard American Diet—which had led to a proliferation of “bad” bacteria and unidentified food sensitivities.

it describes what happens when immune cells detect a problem and release something known as “inflammatory mediators,” which cause blood cells and immune cells to rush, say, to a wound. This process can produce pain, irritate nerves, and damage tissues.

the intestine is basically one long organ of the immune system,”

the nature of many immune-modulated or inflammatory disorders is to attack in cycles, to flare.

Like many patients, I hungered for cast-iron certainty even though I realized that I was living in a morass of uncertainty—why

To find that I was sick in a way that made any immersion in my work impossible—this was a blow for me, too, one that I couldn’t accept yet.

The part of me that spent hours looking at home design sites and clothing on sale was the part of me that wanted to live and didn’t know how else to express it. The worse I felt, the less I could do what I wanted (work, think), the more I searched for beauty and for pleasure.

the “environment,” a term that can refer to a person’s microbiome or exposure to such things as toxic chemicals and trauma. (Both have been shown to affect the immune system.)

hope that the race to understand long COVID will advance our understanding of other chronic conditions that follow infection, transforming medicine in the process.

in some people the bacterial infection went on to cause stomach cancer—showing that an infection could be a trigger for cancer.

antibiotics to processed diets to an explosive growth of chemicals in the environment, may have contributed to a vast increase in these diseases precisely when medicine was evolving to embrace one-size-fits-all diagnoses.

to treat the growing numbers of patients living with these amorphous, system-roaming illnesses, medicine may need to return to a model of disease at the core of ancient medicine, one that sees sickness as a disruption of a particular body’s natural balance.

“allostatic load,”

the weight of the wear and tear on a body as it tries to retain equilibrium in a taxing and stressful world.

The twentieth century was, as Sontag put it, “an era in which medicine’s central premise is that all diseases can be cured.” The twenty-first century will be an era in which medicine embraces the complexity of disease triggers.

illness narratives accordingly must evolve from accounts of dramatic onset and ultimate cure (or tragic death) to subtler accounts of change.

the special horror of being not only ill but also marginalized—your testimony dismissed because your lab work fails to match a preexisting pattern.

On the one hand, she must advocate for herself, even when doctors are indifferent or ignorant, and not be deterred when she knows something is wrong.

she also must be willing to ask whether an obsessive attention to symptoms is going to lead to better health.

insistence on the reality of the disease and resistance to her ow...

This does not mean that the illness is in the mind; rather, the mind—that machine for making meaning—makes endless meanings of its new state, which may themselves influence the experience.

Healthy people have the luxury of forgetting that their existence depends on a cascade of precise cellular interactions.

I grew frustrated that so many people wanted to assume that my pain was emotional in origin without knowing anything about my medical history.

technological advances and corporatization transformed the American medical system into one characterized by silos and high-tech specialization, resulting in a bureaucratic remove from the patient.

“To speak our life as we feel it is a freedom we mostly choose not to take,” the writer Deborah Levy notes.

2004 Johns Hopkins study found that nearly two thirds of doctors surveyed felt inadequately trained in key aspects of care of the chronically ill.

basically, our current system, in which insurance companies like Aetna and UnitedHealthcare negotiate with networks of doctors to determine how much care patients get, whom we can see, for how long, and at what price.

insurance companies have set fees lower and lower, and doctors work faster and faster, especially when they are in large medical networks that require them to cram in a set number of visits per day.

health care is divided into silos, with each specialist operating individually, keeping their own records, and referring patients who need to see other...