Link Roundup: March 22nd, 2019

Hi all! It’s Jay. I do a link roundup (almost) every Friday. If you encounter a chronic illness-related link you think I might want to share, please tweet it at me or Chronically Lit.

Chronically Lits link roundup
Image text: Chronically Lit’s Link Roundup: the best illness writing online

In those days, I thought of myself as healthy. Sometimes I got a little light-headed, because I often had low blood pressure and a low heart rate. Once in a while, I’d get dizzy and pass out. When I was fourteen, I had a migraine that kept me in bed for a couple of days, and in drama school I’d collapse once in a while. But it all seemed manageable, part of the stress of being an actor and of life in general. Now I think that I might have been experiencing warning signs of what was to come.

I am 100% on board with the trend of celebrities speaking openly about their illness issues. For the New Yorker, actor Emilia Clark of Game of Thrones writes about experiencing two aneurysms.

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I want to tell you about the night I got hit by a train and died.

The thing is — it never happened.

This was many years ago.

It is rare that I share fiction in the link roundup, so this is exciting! “Last Night” by Laura van den Berg in Electric Lit is about teen girls grappling with suicidal desire.

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We find statistically significant dose-response relationships between daily perceived discrimination and psychological distress, between lifetime perceived discrimination and psychological distress, and between psychological distress and chronic pain. Based on our instrumental variables regression model, we estimate that 4.1 million people in the US in 2016, aged 40 and older, experience chronic pain that is caused by increased psychological distress, where psychological stress has increased due to perceived discrimination.

It’s also rare I include scholarly articles in the link roundup, so this is exciting, too! “Discrimination hurts: The effect of discrimination on the development of chronic pain” in Social Science & Medicine is amazing. If you don’t have a university log-in, you might only be able to read parts of it, but still worth it!

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Viewed against the sobering backdrop of Western medical history, the Goop turn in female self-treatment can be seen as more than just another jaded journalistic narrative about delusional women and their soft-headed disbelief in science. In important respects, it is also an attempt to wrest control and authority back from a medical community that has mistreated women for centuries. A male-dominated medical world is no longer the authority on the female body—I am, with the help of online message boards, Goop newsletters, and random Google searches for things like “why is my discharge like this” or “how do I get rid of wrinkles” or “can a person eat nightshades and not die.” We could be regressing, then, to something like the oral medical tradition of the medieval midwife, where knowledge is come across sporadically, where anecdote is given as much credence as experimentation, and the knowledge base is decentralized.

This article in The Baffler about Goop, by Jessa Crispin, covers so much more related to chronic illness, particularly chronic fatigue syndrome and the history of Western medicine.

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To communicate “together” in American Sign Language (A.S.L.), you press your knuckles together and hold your hands close to your chest before circling them counterclockwise and bringing them to rest below your heart. Like many signs in A.S.L., it seems to convey several meanings at once: linkage, firmness, circularity. It was a sign in frequent use one day last September, in a hotel conference room outside Boston, where the Gallaudet University Bison, the country’s only college football team for the deaf and hard-of-hearing, was trying to figure out whether and how to protest during the national anthem. It had then been a year since Colin Kaepernick sat, and then took a knee, during the anthem to protest racial injustice in America.

I know I’m super late on sharing this, but it’s still worth a read. In the New Yorker, Matthew Davis writes about how the only college football team for the deaf showed their solidarity in protesting the national anthem.

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That day, she met with a radiologist. She was not due for a scan, and she was not given one. Instead, she received the vague assurance that they were going to “keep an eye” on her. The doctor said there was “nothing suspicious,” and her regular oncologists refused to see her because they deemed it unnecessary. A few months later she was able to see her chart. Of that visit, someone had written: “Rebecca continues to be paranoid.”

It’s a small note. But it is stuck into the memory of her treatment like a wedge that won’t allow a gap to close. This was not from a doctor who tossed her aside, but one who was invested in her care, had been there through her initial radiation. There’s a whiff of old “female hysteria” to it, with more than a hint of dismissal. Becky was scared, and perhaps that was the main takeaway that day. But she was also right.

Kate Beaton writes about her sister’s struggle with cervical cancer for The Cut in “Our Sister Becky: What if the doctors had listened to her?”

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I was 19 when I first had sex and found myself in the throes of what I would later find out to be recurrent cystitis. While my friends were enjoying a tour of Paris and patisserie shops, I was sitting in shallow warm water in a dirty hostel bathtub, suffering from a fever. Razor-sharp pain stabbed through my crotch and lower stomach.

In Broadly, Kara Godfrey writes “What it’s like to Get a UTI Every Time You Have Sex.”

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In the last few years, I have given up on the many medical measures—cancer screenings, annual exams, Pap smears, for example—expected of a responsible person with health insurance. This was not based on any suicidal impulse. It was barely even a decision, more like an accumulation of micro-decisions: to stay at my desk and meet a deadline or show up at the primary care office and submit to the latest test to gauge my biological sustainability; to spend the afternoon in faux-cozy corporate environment of a medical facility or to go for a walk. At first I criticized myself as a slacker and procrastinator, falling behind on the simple, obvious stuff that could prolong my life. After all, this is the great promise of modern scientific medicine: You do not have to get sick and die (at least not for a while), because problems can be detected “early” when they are readily treatable. Better to catch a tumor when it’s the size of an olive than that of a cantaloupe.

I knew I was going against my own long-standing bias in favor of preventive medical care as opposed to expensive and invasive high-tech curative interventions. What could be more ridiculous than an inner-city hospital that offers a hyperbaric chamber but cannot bestir itself to get out in the neighborhood and test for lead poisoning? From a public health perspective, as well as a personal one, it makes far more sense to screen for preventable problems than to invest huge resources in the treatment of the very ill.

Last year, Yes! Magazine published an excerpt of a Barbara Ehrenreich book in which she discusses why she’s given up on taking preventative care tests.


Jay Vera Summer is the Editor in Chief of Chronically Lit.