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November 10 - December 20, 2022
At first no one even believed I was ill—not even I did, exactly. Trapped in a body that wasn’t working, I embarked on a complicated and obsessive quest for answers. I was met by turns with cutting skepticism but also authentic concern from clinicians, friends, and colleagues. I eventually received an initial diagnosis of an autoimmune disease, but the diagnosis did not fully explain my symptoms.
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.
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.
It aims to find language for a lived experience that in some ways resists description, to show how our culture tends to psychologize diseases it doesn’t yet understand, and to explain how and why our medical system, for all its extraordinary capabilities, is ill-equipped to handle the steep rise in this kind of chronic illness.
To have a poorly understood disease is to be brought up against every flaw in the U.S. health care system; to collide with the structural problems of a late-capitalist society that values productivity more than health; and to confront the philosophical problem of conveying an experience that lacks an accepted framework.
I toggled between the conviction that something had to be wrong—I didn’t feel OK—and the conviction that I was to blame, and if I just stopped eating sugar, or pizza, say, I’d be fine.
I thought everyone felt this way, that I was just fighting a cold. But why was I so often on the verge of a cold—more than anyone else I knew?
I remember googling my symptoms and being struck by how much they matched those of several autoimmune diseases. I showed the results page to Jim; as the screen cast a blue light against his face, he nodded. “You are tired a lot for someone so young,” he said. But then my doctors would reassure me that my lab work looked fine, and I’d return to trying to power through.
When I woke up the next morning, I was exhausted and foggy headed. My mother knocked on the door, wanting to take a walk on the beach. Her black eyes were bright with the eagerness to live, and I found myself thinking that it seemed like my mother, despite undergoing chemotherapy, had more energy than I did.
I slipped out on a break for a double espresso, but the caffeine failed to clear the wooliness in my mind. I got headaches and felt dizzy when I ate; my throat was often sore. I kept reversing phrases—saying things like, “I’ll meet you at the cooler water.”
I wanted to work; the future beckoned. And yet I was so tired I could barely focus on my computer screen.
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.
I didn’t worry about what the diagnosis meant; I was just happy to have one.
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.
In some ways, autoimmune disease is as much of a medical frontier today as syphilis or tuberculosis was in the nineteenth century.
Many autoimmune diseases are associated with earlier mortality;
My experience of feeling unwell for years before I received a diagnosis is typical. According to AARDA, it takes an average of three years (and four doctors) for a sufferer to be given a diagnosis of an autoimmune disease.
Another difficulty in diagnosing autoimmune diseases is that they often present as a systemic illness, with symptoms occurring in different parts of the body, and yet our health care system is very siloed. Patients often end up consulting different specialists for different symptoms, with no one taking a big-picture look at the patient’s illness, unless a primary care doctor has the time to puzzle it out. One woman I interviewed told me she was referred, over time, to a dermatologist, an endocrinologist, an immunologist, and a neurologist. She felt that each doctor she saw was just checking
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My fatigue felt like a problem with me—something about my very being. I worked too hard, but without enough discipline; I exercised, but I ate junk food; I was sloppy where I should be ascetic. When I felt off, it was my fault, a sign of some internal weakness, a lack of moral fiber, a crack running through the integrity of my being.
It was a version of the autoimmune Paleo diet, which looks a lot like the so-called Paleo regimen: no gluten, no refined sugar, little or no dairy, lots of organic meat and vegetables, but also no eggs or nightshade vegetables. The goal of the diet was to fix any underlying “gut flora dysbiosis”—an imbalance of good and bad bacteria in your gut—and begin repairing the gut by allowing the mucosal wall that lines it to heal.
“Inflammation” is a word that gets thrown around a lot. Generally speaking, 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. While acute inflammation is useful in helping heal wounds and fight infections, chronic inflammation is harmful to the body and has been associated with a higher risk of cancer and stroke, among other issues.
I watched the lives of others with a sense of wistfulness.
“How are you doing?” Gina asked one morning. “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.”
(Placebo effect? I didn’t care.)
I tried to chart my symptoms, to treat myself like a lab subject.
I stared at the test tubes, wishing that the purplish red liquid filling them could yield a definitive explanation for my remaining symptoms.
Even this expert physician did not know what was happening in my body. Like many patients, I hungered for cast-iron certainty even though I realized that I was living in a morass of uncertainty—why was I always iron and vitamin D deficient? Why was it so hard to treat my disease? I found myself wishing I could have blood tests every few months, to chart my antibodies and vitamin levels.
On some days, I couldn’t open jars or sign my name on checks.
You’re not imagining it, she said kindly. We just might not be able to do anything to help you. Her kindness—and her acknowledgment that I was suffering from something—buoyed me.
In the way of things, I woke the next day in pain and found myself mourning my old robust state of health.
Why had it taken me so long to get answers in our hyperdiagnostic age, in which you can get a diagnosis for everything from shyness to sphenopalatine ganglioneuralgia (also known as “ice-cream headache”)?
fatigue. (Such an empty word: it sounded like I meant I was tired, whereas I kept imagining my body’s mitochondria were sick, like those of little Charles Wallace in Madeleine L’Engle’s A Wind in the Door.) By now, I could barely summon up the energy to walk more than a few blocks.
The HPA axis, as I learned, is a term for the interconnected systems (“an intricate, yet robust, neuroendocrine mechanism,” as one article put it) by which the body responds to and overcomes stressors, mediating the effects of everything from infections to trauma by regulating immune cells, metabolism, hormones, and the autonomic nervous system.
adrenal fatigue, a diagnosis that is not recognized by Western medicine but that many chronically ill patients consider to be a key factor in unexplained exhaustion. The notion is that the wear and tear of modern life—or the ravages of infections—have taxed the sufferer’s adrenal gland, which releases cortisol, a stress hormone, leading to disruptions in the circadian rhythm and then to insomnia and fatigue.
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.
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.
Autoimmune diseases have biological markers, but they come and go, and patients’ flares can be exacerbated by stress. Such diseases require us to think about illness in a more complex way than we usually do, a more complex way than twentieth-century medicine did, since it was, at heart, based on the idea that all bodies respond roughly the same way to infection. That perspective is turning out to be oversimplified.
Today, a doctor presented with a hard-to-identify disease will often shrug the patient off, and so patients who report lingering symptoms after an infection, for example, have long been ignored
Thinking about disease as a complex individualized consequence of genes and infections and stress and our immune systems means living with uncertainty instead of diagnostic clarity.
many of us may live in a gray area between health and disease for years, amorphously fluctuating between feeling well and being symptomatic.
modern medicine’s stigmatization of patients who lack clear-cut test results continues to be a chief shortcoming of the American health care
your testimony dismissed because your lab work fails to match a preexisting pattern.
One of the hardest things about being ill with a poorly understood disease is that most people find what you’re going through incomprehensible—if they even believe you are going through it.
“Pain is always new to the sufferer, but loses its originality for those around him,” Alphonse Daudet observes in In the Land of Pain. “Everyone will get used to it except me.”
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. On the other, 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 own catastrophic fears.
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.
