Home > Work > The Invisible Kingdom: Reimagining Chronic Illness
1 " The actual encounter was always confusing, eleven minutes of liminal contact in which I tried to conduct myself in a way that would make the doctor like me, in the hope they would take some true interest in my plight. But their day was full of tests to order, bureaucracy to cut through, an education that taught them not to say, "I don't know what's wrong with you." And so we stood together in a tiny antiseptic room, the doctor and patient, a world apart. "
― Meghan O'Rourke , The Invisible Kingdom: Reimagining Chronic Illness
2 " And so it is a truth universally acknowledged that a young woman in possession of vague symptoms like fatigue and pain will be in search of a doctor who believes she is actually sick. "
3 " I know many people who are suspicious of diagnoses—they think of them as labels that reduce or stigmatize. I knew, already, that a diagnosis was not going to answer all my questions. But I craved a diagnosis because it is a form of understanding. "
4 " There is a loneliness to illness, a child's desire to be pitied and seen. But it is precisely this recognition that is elusive. How can you explain and identify your condition if not one has any grasp of what it is you suffer from and the symptoms wax and wane? How do you describe a disease that's not always there? "
5 " Autoimmunity is internalized by patients as an opportunity for the ultimate self-management project. But in fact it is a manifestation of a flawed collective project. If it is an indictment of anything, it is an indictment not of our personhood but of our impulse to see social problems as being about our personhood, instead of a consequence of our collective shortcomings as co-citizens of this place and time. "
6 " 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. "
7 " 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. "
8 " The more I talked to sick people. the more I found that what is most disturbing for many of is is that grace has become a kind of moral requirement in sickness: If you must be ill, at least be improved by your illness. And yet conditions under which grace can emerge may not be present. "
9 " This seems like one of the hardest things about being sick in the way you’re sick: being sick makes you stressed. But being stressed makes you sicker. "
10 " After all, a terrible anxiety attends chronic illness. Over time, it becomes difficult to untangle the suffering from symptoms like pain from the suffering inflicted by the anxiety over the possibility of more pain, and worse outcomes, in the future. 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. "
11 " But the fatigue of physical dysfunction, I came to recognize, is as different from normal sleep deprivation as COVID-19 is from the common cold. It was not caused by needing sleep, I thought, but by my body’s cellular conviction that it needed to conserve energy in order to fix whatever was wrong. The feeling erased my will, the sense of identity that drives most of us. The worst part of my fatigue was the loss of an intact sense of self. "
12 " To have pain is to have certainty; to hear about pain is to have doubt.” The same was true of all my symptoms, none of which could be seen. In those months I was lonely in a way I never had been before. I could taste the solitude of the human body like brine in my mouth, a taste that never left me. • "
13 " How to describe intermittent severe pain on the same scale as constant middle-range pain, which I found more debilitating? "
14 " I got used to being uncomfortable, and I internalized the idea that my mentioning my discomfort made me fussy—“The princess and the pea,” my mother once said, in irritation, making it clear that I was demanding too much when I complained. "
15 " The emotional journey has been as hard as the physical one. The fear I feel, in combination with busy doctors who don’t have time to listen, has really affected me. "
16 " Only a few friends realized at the time how much physical suffering I was undergoing. We are bad at recognizing the suffering of others unless we are given clear-cut clues and evidence. And so invisible illnesses often go unacknowledged, while less serious conditions get attention. "
17 " It is unbearable—and yet I bear it. "
18 " When I got acutely sick, I could only dream of such a scenario! Instead, I laboriously made my many appointments, trundling from doctor to doctor, trying to get them to share information and offer treatments. "
19 " don’t believe I will get better,” Daudet wrote, “. . . yet I always behave as if my damned pains were going to disappear by tomorrow morning.”) "
20 " autoimmune diseases are one third genetic and two thirds environmental "
