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structural problems of a late-capitalist society that values productivity more than health;
Perhaps thinking of autoimmunity as the disease itself is akin to the mistake that nineteenth-century doctors made in classifying fevers as distinct diseases rather than as symptoms of diseases,
One Harvard researcher told me that medical science’s understanding of autoimmunity lags a decade behind its understanding of cancer
studies of twins suggest that autoimmune diseases are one third genetic and two thirds environmental,
tests often show the presence of disease only when 80 percent of the organ under attack has been destroyed.
“The tendency in many parts of medicine is, if we can’t measure it, it doesn’t exist, or the patient is cuckoo.”
this new view of illness recognizes that individual immune responses to infections vary dramatically and are influenced by social and genetic determinants of health.
“Semmelweis reflex”—the reflexive rejection of new paradigms in medicine.
“Pain is always new to the sufferer, but loses its originality for those around him,” Alphonse Daudet observes in In the Land of Pain.
The patient has to hold in mind two contradictory modes, in other words: insistence on the reality of the disease and resistance to her own catastrophic fears.
Complaining of fatigue sounds like moral weakness;
(It had worked for them; therefore it must work for you—a mindset one encounters a lot.)
Knowledge brings the hope of treatment or cure. And even if there is no cure, a diagnosis is a form of knowing
the incidence of severe diabetes complications in patients of doctors who rate high on a standard empathy scale is a remarkable 40 percent lower than in patients whose doctors do poorly on the empathy scale,
“the idea that the opportunity for patients to feel heard and cared for can improve their health.”
rational doctor, presented with a patient who feels unwell and has a family history of autoimmunity, ought to think, This might be one of those patients.
How could I get better if no one thought I was sick?
“Of the FDA-approved drugs that had been pulled from the market between 1997 and 2001 because they were found to have ‘unacceptable health risks,’ ” Maya Dusenbery reports in Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick, “eight out of ten were more dangerous to women than to men.”
Autoimmunity, fibromyalgia, chronic Lyme, ME/CFS—these are today’s hysteria.
2015 study from Pediatrics concluded that babies born by cesarean section had a “significantly increased risk of asthma, systemic connective tissue disorders, juvenile arthritis, inflammatory bowel disease, immune deficiencies, and leukemia.”
Shocking information I bet most mothers don’t know.
Toxic Substances Control Act of 1976, which introduced legislation aimed at regulating the use of toxic chemicals, grandfathered in 62,000 chemicals without testing them
we are just beginning to understand that the body is teeming with organisms, not just in our gut but in our tissues.
“many autoimmune disorders tend to affect women during periods of extensive stress, such as pregnancy, or during a great hormonal change.”
Michael D. Lockshin, director of the Barbara Volcker Center for Women and Rheumatic Diseases at the Hospital for Special Surgery in New York City, writes in his book The Prince at the Ruined Tower: Time, Uncertainty, and Chronic Illness, “I now accept that uncertainty occupies a substantial part of the world in which my patients, my students, and I live. We do not need to hide it from view. It is not cause for fright. Uncertainty is just another tool that we can learn to use.”
But the immune system also does things like “aiding” cancer cells “to spread and establish new tumors throughout the body,”
The focus on personal realization obscures the fact that it is not our selves that are wrong but the very structure of our society, with its failing support systems, its poor chemical regulation, its food deserts, its patchwork health care delivery.
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.
being sick makes you stressed. But being stressed makes you sicker.”
racism exacts debilitating vigilance from Black bodies. That vigilance has an invisible physical cost.
The state of a person’s immune system is, among other things, a reflection of that person’s socioeconomic status and their history as a citizen of a flawed polis,
the American affection for positive thinking reflects a desire for illness stories to have neat resolutions and uplifting moral outcomes.
most studies have suggested that positive thinking does not lead to better outcomes with breast cancer.
thoughts are, in a sense, somatic.
our thoughts can change our health—but only if we really believe the thoughts.
exposure to antibiotics in infancy, another shows, leads to increased rates of asthma and weakened immune response.)
The FMT was so effective, the researchers stopped the trial so that all patients in it could access the procedure.
Indeed, just because a symptom is common—and subjective—does not mean that a patient cannot tell the difference between a normal version of it and a pathological one, the way we experience the difference in severity between the common cold and the flu.
This quote was about fatigue I believe. And yes, we can all be tired, but you can also recognize when it’s more than “normal.”
This is the real tragedy of our cultural psychologization of diseases we don’t understand: the ways such dismissals leave patients to suffer alone, their condition turned into a character flaw.
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.
it appears to be difficult for doctors (and the rest of us) to recognize suffering that we cannot name—why
Why do we have a system that’s so quick to distrust the very people it serves?”
“What we know from these sorts of conditions is the longer that you persist with the symptoms without having them managed, the longer it takes to eventually rehabilitate them.”
They had embraced the reassurances of a cultural narrative in which the ravages of illness are offset by the enlightening spiritual knowledge they bring with them—a
In the American pop spiritual approach, illness is a vehicle for self-improvement and hard-won acceptance, a line of thinking the sick patient quickly finds everywhere.
My narrative is not a neat one.
❤️
But I will not repeat falsehoods; I will not say the wisdom and growth mean I wouldn’t have it any other way. I would have it the other way.
Listening is hard, but it is also a fundamental moral act.”
But I cannot reassure any of us in the way we want.
not only did I suffer from a disease, but I suffered at the hands of a medical establishment that, for too long, failed to fully credit my testimony.
