More on this book
Community
Kindle Notes & Highlights
At the same time, Westerners’ immune systems are being exposed to a vast array of potentially hazardous chemicals in our environment, the amount of which has risen precipitously since 1950.
Poignantly, breast milk has been shown to contain dry-cleaning chemicals, paint thinners, and flame retardants, among other chemicals.
these chemicals may have what she calls an “autogenic” effect on our bodies, triggering self-attack the way carcinogens trigger cancer.
trichloroethylene (TCE), a chemical used in paint and stain remover, now found in groundwater and soil, causes an autoimmune response in the T cells of genetically susceptible mice.
Less than 6 percent of the NIH budget is devoted to exploring environmental effects of chemicals on humans.
Chemical regulation in the United States is abysmal: the 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 and set the bar very low for future regulation.
Chemical companies in the United States are not compelled to disclose whether the substances they work with c...
This highlight has been truncated due to consecutive passage length restrictions.
the United States continues to use chemicals and pesticides banned by Europe as known carcinogens and pollutants.
some viruses never go away—that, rather, they enter a latent period during which they live in our body for years, reactivating when the immune system is unable to contain them, perhaps because it is busy fighting other infections or because of the decline in immune cell production associated with aging.
how the microbiome may influence chronic inflammatory diseases.
that the body is teeming with organisms, not just in our gut but in our tissues. “We are always only partly human,” Proal said. Those organisms release chemical by-products that can affect many aspects of what we take to be our “self,” from mood to physical well-being.
the microbiome (whether in our gut or in other organs and tissues or, indeed, in our mouth) and our immune system are like a kindergarten class and a teacher.
Women generally have a stronger immune response to infections and vaccines than men do.
Studies suggest that estrogen interacts with the adaptive immune system’s B and T cells in ways that predispose it to become more “autoreactive.”
the reproductive years, medical school teaches, put women at risk for autoimmune disease, perhaps due to the hormonal changes during and after pregnancy.
During the decade surrounding menopause, studies show that women are at higher risk for developing some kinds of autoimmune diseases.
the idea that the events of one’s life can shape the genetics of one’s child runs counter to all that we memorized for tests in high school biology. Epigenetics, though, does not refer to changes in the DNA code but to changes that can turn a gene “on” or “off.” And these changes, it turns out, can be passed from generation to generation.
Smoking, working night shifts, infections, stress, famine—all have been shown to cause epigenetic changes in the body, some of which can be passed on.
impacting the relationship between the sympathetic and parasympathetic nervous systems and affecting our hormones.
trauma and stress, by driving the body into a frequent cycle of alert, can kickstart a chain of processes that may manifest as “autonomic dysregulation,” or dysregulation of our unconscious nervous system, in which small deviations in a complex chain of events lead to symptoms for the patient that are often seen as purely psychosomatic.
These invocations by healthy people imply a kind of solution to the terrifying reality of complex chronic illness: the individual is ultimately responsible for their illness, not the polity.
the pressure of modern life in late capitalism, with its pollution, its insecurities, its degraded food system, its overreliance on antibiotics, its endless stressors, and its weak safety nets
In each generation we compromise our microbiomes and environment and hand them off to our children, whose microbiomes and environment became further compromised by diet and chemicals.
“Negative Capability,” as he termed it, is the quality “of being in uncertainties, Mysteries, doubts, without any irritable reaching after fact & reason.”
his formulation of negative capability seemed to be a key to living well in the face of pain. It was a profound insight of the sort that comes from witnessing loss and suffering up close. (As the chronically ill know, to be alive is to be in uncertainty.)
doctor friend told me that in med school he was explicitly taught never to say “I don’t know” to a patient. Uncertainty was thought to open the door to lawsuits.
I lived in a culture that promotes the importance of triumph over adversity— a culture that insists on recovery.
in the meantime, I might become one of those people lost on the way to answers, treatments, cures—lost in the knowledge gap. There is one certainty for those of us at the edge of medical knowledge, though: we live in the gap together.
I now knew, without a doubt, that there was such a thing as selfhood, because I had lost it. It existed only in the form of dim memory, an intuition that I used to be different.
if you have an autoimmune disease, what are you fighting against? Do you fight against your own immune system? Are ‘you’ your immune system? Are you the organ under attack? Who are you?”
we turn poorly understood illnesses into symbols of other things. Autoimmunity invites patients to psychologize their own symptoms like almost no other contemporary pathology does, because the fact of the immune system attacking the very body it is designed to protect seems itself metaphorical.
popular culture and medical science alike have come to frame the immune system as a valiant force deployed to protect us.
This is how most of us now imagine our immunity: as a kind of ethno-nationalist military enterprise, nature’s defense system. (I found I couldn’t scrub language like “vanquish” and “defend” from these pages.)
the immune system also does things like “aiding” cancer cells “to spread and establish new tumors throughout the body,”
By anthropomorphizing white blood cells (as distinct from, say, liver cells), we reinforce our belief in the special status of the immune system as an intimate defender.
When, in autoimmunity, the immune system attacks the body instead of defending it, it feels natural to experience this as a betrayal in which we are both betrayer and betrayed. Metaphors shape how we think, and so if antibodies are soldiers fighting off an incursion of germs, then autoimmune processes become cases of mistaken friendly fire. How not to interrogate the psychological implications of that?
these metaphors had profound implications for me and for the people I interviewed, many of whom saw their illness as a form of personal failure requiring self-indictment.
we are misled by metaphor into seeing personal significance where there may be merely accident—or, indeed, systemic causes.
It is, in a way, irrational to view the immunological consequence of contracting a virus at a stressful time or your body’s reaction to autogenic chemicals at the dry cleaner’s you live above as a profound comment about your identity. But this is p...
This highlight has been truncated due to consecutive passage length restrictions.
Christianity saw illness as a sign of spiritual taint—a metaphor for sin. In the Gospel, the sick are healed when they accept faith. Our word “pain” is from the Latin poena, or “penalty,” later the Old French peine, or “suffering,” as punishment. In the twentieth century, Freud and his descendants updated this framework by psychologizing illness: the body’s symptoms were now not a sign of sin but a sign of taboo or repressed emotions.
today, in our secular, individualistic nation, an amorphous illness is seen inevitably as an opportunity to uncover the authentic nature of the self and improve it, a project squarely in line with other obsessions of our neoliberal society.
Autoimmunity is internalized by patients as an opportunity for the ultimate self-management project. But in fact it is a manifestation of a flawed collective project. 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.
Wow!!!
Autoimmune disease, Matzinger thinks, happens because the system is set up to respond to chemical distress calls, some of which may come from damaged cells in the body rather than from foreign material.
In this sense, autoimmunity would not be a struggle of self against self but the expression of a body overwhelmed by modern chemicals, viruses, traumas, and a degraded food chain. An expression of a body convinced that danger was all around.
We continue to describe it as a process in which a body has started attacking its own self. This discourse almost irresistibly makes a patient feel that their own divided emotions about their life shape their symptoms.
Autoimmunity, then, is awash in the collisions and illogic of modern Western culture. At its heart is a conflict—but it is, I contend, a sociopolitical one, not a personal one. The irony is that even as the people I interviewed recognized the sociopolitical dimensions of their condition, they had also internalized the idea, as I had, that something about them was the problem, and that it rested on them alone to fix the inauthenticity that made them stressed-out and unhappy.
the idea of autoimmunity as the expression of a conflicted self could be said to serve a purpose that reinforces the societal status quo more than it elucidates biology. First, it gives the patients a story they can focus on and attempt to exert control over. It gives biographical meaning to the disease that otherwise is being described in clinical terms in fifteen-minute appointments by a physician with whom, most likely, the patient has almost no relationship. Instead, the patients tell themselves a story that, painful though it might be, offers them a modicum of control—and the promise of
...more
In doing so, it makes the illness an individual problem rather than a social issue. Second—and relatedly—it suggests to the rest of us that these patients are not our problem. The people who brought the disease upon themselves, who were, let’s say, given to disease, are their own problem. Their illness is personal. If they are stuck in negative thinking, their difficult view of life is for them to overcome—or accede to.
a kind of hyperpersonalized concern with wellness is the hallmark of twenty-first-century invalidism—a quality that lets the rest of us dismiss the invalid as fussy or oversensitive while we get back to our frenetic, endlessly connected, productive lives.
When no one can tell you exactly why you’re sick, it is surprisingly easy to tell yourself a story about the illness. Why me? Because of me. You identify with your illness and feel that somehow you have caused it.
