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December 21 - December 27, 2022
Autoimmune diseases affect different groups differently, too. For reasons that are still not well understood, approximately 80 percent of autoimmune patients are women, though a handful of autoimmune diseases overwhelmingly affect men.
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.
He talks about the strange pleasure of searching for the patient whose experience of illness is most like his own.
every morning I woke up feeling as if I had the flu—which I understood was a sign that my body was experiencing inappropriate inflammation.
“I just want to get better. I want to go for a day without thinking about my body.”
“The tendency in many parts of medicine is, if we can’t measure it, it doesn’t exist, or the patient is cuckoo.”
is a test case for this new model of thinking about infection as a trigger of immune dysfunction. One of the disease’s great mysteries is why some thirty-year-olds die from it and others don’t even notice they have it, while still others have a mild acute case but end up suffering from long COVID for months afterward, unable to walk up a flight of stairs without getting winded and dizzy. This pandemic has vividly dramatized the variability—and lingering complexity—of the human host’s response to a pathogen.
“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.”
In 2011, I started having serious hip pain and was diagnosed with a torn labrum and arthritis, for which I had surgery that I was slow to recover from.
pain was only one of my symptoms, and not even the worst. 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.
Even as a white cisgender woman, I faced indifference and incuriosity.
A patient goes to the doctor to explain that something seems very wrong. When tests turn nothing up, the patient is told she is fine, and emerges without answers, questioning everything she thought she knew about her body and her perceptions.
The most alarming fact I learned, when I began my research, was how quickly doctors’ empathy wanes.
“Patients need to be relentlessly assertive and ask their questions as many times as necessary, until they get answers they can understand. It is their body; it is their well-being; they deserve an answer.
Alternative medicine is built around the twin rituals of offering soothing care and focused attention.
When, I wondered, had I last yearned for something other than simply feeling better?
People whose illness has no name get little sympathy.
society has long held about women who are ill is that their unwellness is mainly in their heads. The 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.
More than 45 percent of autoimmune disease patients, a survey by the Autoimmune Association found, “have been labeled hypochondriacs in the earliest stages of their illness.”
and that they are notoriously hard to identify in blood work early on.
It remains remarkably challenging for women to get consistent access to first-rate care. Medicine treats women differently from the way it treats men,
And so research has failed to consider differences in male and female biology, including disparities in how people of different sexes respond to pharmaceutical drugs—due to variations in metabolism, body fat percentages, and enzyme activity. Low-dose aspirin lowers the risk of heart attack in men, but it has no impact on heart disease risk for women under sixty-five. Beta-blockers may place women with hypertension at a greater risk of heart attack,
Women have more complications from anesthesia.
Ambien, which is metabolized so much more slowly by women than by men that women were getting into car accidents the morning after taking it. In 2013, the FDA required the manufacturer to reduce the approved dose for women by a remarkable 50 percent.
The central issue is that physicians tend not to see women’s self-reports of illness symptoms as valid.
‘There’s nothing wrong with you. You’re just depressed’—well, it was so demeaning.”
“Anxiety should be the very last thing they come to, after they check out every single other thing.”
“many autoimmune disorders tend to affect women during periods of extensive stress, such as pregnancy, or during a great hormonal change.” Studies have identified links between endocrine transition states in women and the development of lupus, multiple sclerosis, rheumatoid arthritis, and type 1 diabetes, among others; the reproductive years, medical school teaches, put women at risk for autoimmune disease, perhaps due to the hormonal changes during and after pregnancy.
Many patients I communicated with seemed to suspect that autoimmunity demanded that you take a closer look at who you really were. An autoimmune disease, various women in my online support groups counseled, compelled you to face the ways you were living an inauthentic life. I encountered exhausted mothers and wives who felt they did everything for those around them and nothing for themselves; women who were trapped in abusive situations; men who, longing for premodern days, had grown suspicious of microwaves or desk jobs. Poor personal choices, they all believed, had led them to this forcing
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I could see how years of stress, poor sleep, and erratic diet could mean that eventually even a healthy body would start to show signs of exhaustion.
Sleep deprivation can impair functioning as much as alcohol consumption.
When you are chronically sleep deprived, inflammation and illness creep in.
Without quite noticing it, I had slid downward to a place where, as Styron put it, “all sense of hope had vanished, along with the idea of a futurity.”
the invisibility of my illness was one of the most challenging parts of my suffering, wearing my resilience down over time. I
it means the patient is now able to manage the illness with some degree of integrity.
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
more I talked to sick people, the more I found that what is most disturbing for many of us is that grace has become a kind of moral requirement in sickness: If you must be ill, at least be improved by your illness.
