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I got sick the way Hemingway says you go broke: “gradually and then suddenly.”
had no idea then that I was living at the edge of medical knowledge.
After I reached my sickest, I dreaded waking, because my symptoms were always worse in the morning, and because I knew the day would be full of suffering without explanation.
As Susan Sontag pointedly observes in Illness as Metaphor, illnesses we don’t understand are frequently viewed as manifestations of inner states.
The less we understand about a disease or a symptom, the more we psychologize, and often stigmatize, it.
Because my unwellness did not take the form of a disease I understood, with a clear-cut list of symptoms and a course of treatment, even I at times interpreted it as a series of signs about my very existence.
Such patients, like me, find themselves citizens of an invisible kingdom.
To have a poorly understood disease is to be brought up against every flaw in the U.S. health care system;
For the medical system to diagnose patients correctly, it must not dismiss their testimony.
All these little problems—they mean something.
I couldn’t remember when I had last felt that alive.
The relief I experienced at hearing her say this was tremendous. Something was wrong: something, then, could be made right.
This was the way medicine worked in the modern world: tests told you what was wrong, and doctors told you how to fix it.
I began to suspect that whatever was wrong with me wasn’t going to be as clear-cut as a simple cold or a malfunctioning organ.
My ability to accumulate information felt like the only control I still possessed.
Intolerant Bodies: A Short History of Autoimmunity.
early symptoms can be intermittent and nonspecific.
She felt that each doctor she saw was just checking “his organ” off the list before telling her it wasn’t the cause of her symptoms and sending her on her way.
And so even though I fussed at times about my aches and pains, fundamentally I expected my body to heal itself.
My fatigue felt like a problem with me—something about my very being.
Is this my future? I wondered.
“I don’t know if I can take this anymore,” I told her. “I just want to get better. I want to go for a day without thinking about my body.”
Writing was how I made sense of the world; it kept me tethered to a key part of myself.
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.
At the time, I knew only that I was a somewhat anxious young woman with largely invisible and hard-to-measure symptoms that came and went and affected different parts of my body.
COVID-19 is a test case for this new model of thinking about infection as a trigger of immune dysfunction.
I 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.
“Pain is always new to the sufferer, but loses its originality for those around him,”
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.
sociologists talk about in connection with chronic illness, in which everything you know about yourself disappears and you have to build a different life.
To 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.
I realized that not everyone in their twenties and thirties was in pain all the time.
But its constancy was wearing. It moved around my body, changing from day to day, worse one day in my hips, the next my neck or my right thumb. My muscles were always tight; shooting pains ran from my shoulder to my neck, or down my legs.
“Burning,” “tingling,” “stabbing”—these words did little to describe pain’s reality, which ebbed and flowed according to its own logic.
I grew frustrated that so many people wanted to assume that my pain was emotional in origin without knowing anything about my medical history.
I had the sensation that I needed to find a better story to tell about my condition, because of course I had no story at all.
Too much of my own life had been spent wondering if what was wrong with me was a deficiency of character.
Yet I felt deeply that something was wrong. I can’t put this into clinical language. All I can say is that it was a bone-deep, a cell-deep conviction: that whatever was wrong was not in my head.
inflammatory and autoimmune diseases can affect the brain, causing neuropsychiatric disease along with other symptoms.
The bigger problem, though, is that all these hoops made it much more likely that I would just give up or fail to follow through.
It is difficult to be a patient for long without coming up against the hard truth that what you are searching for and what your doctor is offering are two entirely different things.
“I want to be treated as a person, but I’m only a patient to them,”
If I had not been sick, I would have felt I was, at thirty-six, in the prime of my life,
Arthur Frank, a medical sociologist, points out that the ill are busy trying to formulate a story to help them navigate their new identity.
It is up to the doctors then to say, ‘I know it’s this,’ or ‘I don’t know, but I’ll try to learn more,’ or ‘I am stumped and think we should get additional input.’ ”
This is why the doctors who took the time to acknowledge that they could see I was sick for reasons they didn’t understand made a powerful impact on me,
And so we stood together in a tiny, antiseptic room, the doctor and the patient, a world apart.
when you live outside the boundaries of known pathology, conventional medicine hesitates to intervene.
from my uncomfortable perch at the edge of medical understanding, I had to experiment.
