Home > Work > The Invisible Kingdom: Reimagining Chronic Illness
21 " Ethical loneliness is what happens when wrongs are compounded by going cruelly unacknowledged. "
― Meghan O'Rourke , The Invisible Kingdom: Reimagining Chronic Illness
22 " one scholar puts it, “if a physician cannot identify the cause of a disease, it means that it is procured by the Devil. "
23 " The word “inflammation” comes from the Latin verb “inflammare,” or “to set on fire, "
24 " Another person posted this to the group Hashimoto’s 411: I can’t do this any more, I am beside myself and can’t stop crying. Today, I received a disability denial letter from Social Security stating that my condition is not severe enough to qualify. . . . I don’t know what to do, I feel like I am no longer living but just existing and miserable because I feel so sick. My unemployment extended benefits are going to run out and then we’ll be in big trouble if we can’t pay our bills, which include lots of medical bills because I don’t have insurance. I just don’t want to be here any more, and think my husband would be better off not having to deal with me, and with my life insurance he would be much better off financially. "
25 " Waking Early Sunday Morning,” I sat “like a dragon on/time’s hoard. "
26 " These hours of aspirational longing, I now more forgivingly think, were a response to the illness. I was trying to manifest the person I wanted to be: a person who could enjoy her life, her home, a person who wasn’t about to die or disappear. 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. "
27 " But if your immune system isn’t great, and fails to monitor it, P. gingivalis starts to produce biofilm-signaling molecules, and neighboring organisms are like, wait, we can join a biofilm?” (Biofilms are slimy structures inside of which bacteria live in an organized community and communicate with one another; the spongy molecular matrix that contains them helps protect them from the immune system’s attacks.) And soon you’ve got a mouth full of cavities. "
28 " In 2019, a study of patients at a clinic in Iran found that “laughter yoga”—gentle yoga that includes laughing—was more effective than anti-anxiety medication in controlling symptoms of irritable bowel syndrome, which are worsened by stress. "
29 " The tendency in many parts of medicine is, if we can’t measure it, it doesn’t exist, or the patient is cuckoo. "
30 " On my message boards a recurrent theme was having a partner who didn’t help, who didn’t get it, who even judged and blamed. Even partners who did help often couldn’t feel the wave of need engulfing the ill person. And my god, the need. It felt shameful to need other people so much. "
31 " Their fierce response was a classic example of what is known as the “Semmelweis reflex”—the reflexive rejection of new paradigms in medicine "
32 " Furthermore, in some people the bacterial infection went on to cause stomach cancer— "
33 " felt a prickle at the special horror of being not only ill but also marginalized—your testimony dismissed because your lab work fails to match a preexisting pattern. "
34 " But medicine has not simply neglected to research women’s health; it has also failed to treat women who are sick. One study found that women in various ERs were 13 to 25 percent less likely to receive opioid painkillers (the strongest painkiller medicine has) than men were. "
35 " Alphonse Daudet observes in In the Land of Pain. “Everyone will get used to it except me. "
36 " Tolstoy said about Ivan Ilyich: “What he longed for was impossible, but still he longed for it. "
37 " be sick in this way is to have the unpleasant feeling that you are impersonating yourself. When you’re sick, the act of living is more act than living. Healthy people have the luxury of forgetting that their existence depends on a cascade of precise cellular interactions. Not you. "
38 " One does not have to be Christian to see that [John] Donne was right. To be ill is to recognize this interconnectedness -- to understand how much we are "a part of the main." But to be ill in America today is to be brought up against the pathology of a culture that denies this fact. In the worst moments of my illness, I was alone because of the ways that we have allowed ourselves to believe that the self, rather than the community, must do all the healing. "
39 " As Virginia Woolf testified in On Being Ill, “English, which can express the thoughts of Hamlet and the tragedy of Lear, has no words for the shiver and the headache. . . . The merest schoolgirl, when she falls in love, has Shakespeare or Keats to speak her mind for her; but let a sufferer try to describe a pain in his head to a doctor and language at once runs dry. "
40 " As the surgeon Atul Gawande wrote of the medical profession, “Nothing is more threatening to who you think you are than a patient with a problem you cannot solve. "