The Invisible Kingdom: Reimagining Chronic Illness
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model works especially poorly for autoimmunity and other chronic illnesses: no one is in c...
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health care in the United States operates predominantly on a fee-for-service basis, which rewards doctors for doing as many procedures and ordering as many tests as possible rather than for offering the best care possible.
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health care outcomes in the United States correlate to income levels.
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“Racism is a public health emergency of global concern.
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how quickly doctors’ empathy wanes. Multiple studies show that it plunges in the third year of medical school, declining when students start seeing patients on rotation and, overworked and overtired, they realize that there is too much work to be done in too little time, or end up distancing themselves self-protectively from their patients in order to survive.
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Being heard by your doctor isn’t just an emotional need but a physical one: patients benefit clinically from feeling cared for.
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the ‘care effect,’
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dysfunctional behavior toward people with the more ambiguous chronic illnesses stems from the fact that the doctor gets anxious about either missing something medical or being made a fool of by a patient who is psychiatrically ill.
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Even at the moment it seems most isolated the body remains “dyadic,” as the sociologist Arthur Frank puts it: in dialogue with the medical system, with spouses, and so on.
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Alternative medicine is built around the twin rituals of offering soothing care and focused attention.
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2016 NIH survey found that Americans were spending $30.2 billion a year on alternative and complementary medicine.
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“What the language of alternative medicine understands is that when we feel bad we want something unambiguously good,” the writer Eula Biss aptly notes
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a growing world of “integrative” and “functional” doctors: MDs who use Western medicine along with alternative practices.
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Alternative medicine also involves a strong element of touch, which is neglected in Western medicine.
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I had begun to internalize the notion that a toxic modernity was afflicting me, contaminating my body.
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It is a discourse not only of optimization but of regret, though this aspect is rarely acknowledged: regret that we cannot undo what we have done to the polluted world; that we cannot have the best of science without having the worst of it; that we live atomized, exhausted, late-capitalist lives,
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The “natural approach” appeals because it trades on notions of purity as a way of restoring health. It promises to return us to a time when our bodies were untainted by modernity, technology, and pollution, a path to a prelapsarian physical self, capable of almost anything, including self-healing.
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In this view, implicitly, illness is almost a deviation...
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at the core of alternative medicine a strangely utopian notion of health, a belief that traditional medicine is itself toxic and the body is a healing machine that tends toward health, as opposed to a system prone to glitches and major dysfunction that only tec...
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Americans’ embrace of the “natural approach” is a rebuke to the dominant social structures of our time—Big Pharma, Big Medicine, Big Tech. But in a crucial way it is also in thrall to one of the most powerful contemporary Western delusions: namely, the idea that we can control the outcomes of our lives, in this case through self-purification.
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When people get sick, they ask themselves: Are we parts or are we whole? Are we mechanisms or are we something more? And whatever we are, what do we want to feel like we are when we’re ill?
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one way of coming to terms with an amorphous systemic disease is recognizing that you are sick, that the illness will come and go, and that it is not the kind of illness you can conquer.
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stereotype of the sickly woman whose disease is strictly psychological still holds today, when examples in medical literature of “problem patients” are nearly always women.
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women are the overwhelming sufferers of autoimmune diseases, that autoimmune diseases are increasingly common, and that they are notoriously hard to identify in blood work early on.
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“We literally know less about every aspect of female biology compared to male biology.”
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In the current research system, little work is done to identify whether sex differences might mean that some drugs work well for men but not women, or to understand how they might work for transgender people in different phases of medical transitioning.
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Black and Latinx patients are undertreated for symptoms compared with white patients.
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Ethical loneliness is what happens when wrongs are compounded by going cruelly unacknowledged.
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after Freud, a patient was no longer “the best judge of what was going on with her body” and “should not necessarily be allowed the last word.”
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today, when a woman enters a doctor’s office, with its sleek antiseptic surfaces and its precise tools, she is still entering a space that views the female body experiencing intermittent symptoms like fatigue and anxiety and pain as one that is expressing something psychological.
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poorly understood diseases are routinely psychologized by doctors, patients, and laypeople.
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“immune system” is itself a metaphor for how our immune cells work.
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primary organs of the immune system, I learned, are the bone marrow and the thymus, a soft, pinkish-gray triangular gland above our heart.
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I came to see the immune system as a kind of college where so-called naïve immune cells grow up and—as if choosing a major—are trained to focus on a specific foreign substance.
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Autoimmunity and allergies occur when immune cells mistakenly identify as pathogens things that are not threats (the thyroid, the liver, pollen, cat dander) and an immune response ensues, possibly because of what is known as “molecular mimicry.”
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Immunology uses the term “regulation” to describe the body’s mechanisms for calling its army of immune cells back and turning off their destructive power.
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When the regulatory T cells aren’t working, you get an out-of-control immune response, making you sicker than you need to be.”
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One reason people feel sick when they have an infection is that the inflammatory response of the immune system itself makes them feel sick—something
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inflammation: blood rushes to the area and so do white blood cells and other immune cells.
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Inside my body, inflammation reigned, worsening at night, when the immune system’s production of pro-inflammatory cytokines and other T cells peaks.
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some researchers suggested that a percentage of autoimmune diseases were triggered by a virus’s effects on genes; others by a degraded microbiome; others by accumulated hits to the system by pathogens; and still others by exposure to unidentified chemicals with autogenic effects. Some argued that low vitamin D or the consumption of too much salt played key roles.
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studies of twins tell us that genetics are not the whole story; at most they’re a contributing factor to autoimmune disease. The other major factor is environment.
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something in the Western environment (defined broadly) is causing a major shift in how our immune system functions.
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whether the relationship between the decline of infectious diseases and the rise of autoimmune diseases is one of mere correlation or actual causation.
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researchers I spoke to put little stock in the hygiene hypothesis as it was formulated, noting that there may be as many bacteria in the New York City subway system as on a farm and pointing to evidence that infections are actually key contributors to autoimmune disease.
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the real question is not which germs we have, but what activity those germs are engaged in, and how various changing aspects of our lives may be shaping that activity.
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the twentieth century led to changes in our microbiome.
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Mounting evidence suggests that processed foods disrupt our gut flora and cause increased intestinal permeability, which allows food molecules to get into the bloodstream—the so-called leaky gut—where the immune system may mount responses to them, triggering food sensitivities and autoimmune responses.
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our lower intestines’ flora are underfed. Over time, this leads to the extinction of whole species of microbiota, an extinction that cannot be fully remedied by returning to a plant-based diet.
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babies born by cesarean section had a “significantly increased risk of asthma, systemic connective tissue disorders, juvenile arthritis, inflammatory bowel disease, immune deficiencies, and leukemia.”