Link Roundup: January 11th, 2019

Hi all! It’s Jay. I do a link roundup (almost) every Friday. If you encounter a 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

One night in bed she had what she calls a peak experience, or spiritual vision. Pearson decided to walk away from her business and devote her life to improving public awareness of trichotillomania. “I was scared shitless. Me: I’m a drug addict, I’m a small-business person, I’m in sobriety, I have an eighth-grade education, and I’m going to get out there and change the world and some weird pathological disorder?” says Pearson. “I just was terrified.”

Sara Talpos and Mosaic write about trichotillomania–compulsive hair-pulling–for The Atlantic.

*

We usually do a breast exam? the nurse at Planned Parenthood says. I’ve moved to small town, a thousand miles away from where I cracked up my Philadelphia midwife by shouting, I’m not pregnant anymore! seconds after giving birth. We usually do a breast exam? It’s said like that: a question I’m supposed to answer. I still have them, I say. I motion towards my layers: a binder, a tee shirt, another tee shirt. They’re under here somewhere. She’s relieved at the joke; I said it like that for her.

“Breasts: A History” is a personal essay in Granta in which Krys Malcolm Belc goes on a winding exploration of his experiences with breasts and the body. We see everything from the gender dysphoria he experienced when developing breasts, a high school teacher having a breast removed due to cancer, his mother getting implants, his wife birth and breastfeed a child, his experience doing the same, and finally, top surgery and hormones.

*

For early-career academics, the caregiving role can be particularly challenging. Graduate students who take over the care of a sick relative are forced to balance the ever-present uncertainties of doctoral study with the new instability at home. Caregiving is no easier for new faculty members, either. Academics already struggle to create boundaries between work and home, often using evenings and weekends to grade, draft lesson plans, and write. When nonwork hours are consumed with familial responsibilities, it can be nearly impossible to meet the ever-increasing expectations for publishing and service.

Manya Whitaker writes to and about academics caring for sick family for the Chronicle of Higher Education in “How to Be a Caregiver While Caring for Your Own Career.”

*

Women in the United States have long lagged behind their counterparts in other high-income countries in terms of access to health care and health status…

U.S. women report the least positive experiences among the 11 countries studied. They have the greatest burden of chronic illness, highest rates of skipping needed health care because of cost, difficulty affording their health care, and are least satisfied with their care.

Oof. The Commonwealth Fund compared women’s health and medical care in the US and ten other countries (hat tip to Forbesfor bringing the report to my attention). We came in 11th on most indicators, have the highest rates of maternal mortality and breast cancer.

*

We talk frequently about “the disability community” in grand, sweeping terms: The disability community thinks this, the disability community does that. It’s a bit of a misleading thing to say, though, because there is no singular disability community, just as it is impossible for me, a particular disabled person caught up in a particular moment, to speak for every disabled person…

It should come as no surprise that disabled people disagree with each other on things that, to the outside world, may seem straightforward, basic, obvious. What to call ourselves. The language we like to use. Our own personal political priorities. What it even means to be disabled.

In Catapult, s.e. smith writes about disagreements among disability activists and the disability community.

*

Four days earlier, my grandmother had called 9-1-1 on her TTY, a device for the deaf that uses a keyboard to send En­glish text over a telephone connection. “HEART HRURT,” she typed. The ambulance came to the Deaf apartment complex where she lived and took her to the hospital, where she wrote out a list of things she needed: glasses, because her vision was her only access to language; TTY, so she could call her family; water; rosary. The TTY was delivered, but the phone line was never connected. It was two days before the hospital staff contacted us, three days before we received the message.

Katie Booth wonders when hospitals will learn to serve Deaf patients better, in Harper’s.

*

People falling off the L platform and getting electrocuted on the tracks: That’s almost guaranteed during Lollapalooza…

The most common question we get asked is, “Did you take the bullet out?” We don’t take the bullets out. If they’re in our face and we find them, great, but unless they are in certain places like joints, we don’t go looking for bullets. They’re like splinters: They work their way out eventually.

Because Chicago is “one of the best places in the world to get experience as a trauma surgeon,” Chicago Magazine interviewed Chicago trauma surgeons about their experiences. This collection of quotes doesn’t directly fall under the topic of “chronic illness,” but it’s fascinating and part of the world of medicine, so I included it.

*

He’s known hundreds of people [with Paruresis] to change jobs or pass up a promotion because their existing workplace bathroom situation is safe, and the new situation involves travel or officemates. Two examples he cites: a journalist who works as a newspaper deliverer and a medical student who can’t finish a residency. He knows of a woman who can only pee late at night in her backyard…

When people have Crohn’s syndrome or colitis, their bathroom needs are episodic and urgent. Episodic because they don’t have problems, or even the same problems, all the time. And urgent because a small delay getting to a toilet can make the difference between a normal day and shitting your pants.

This Buzzfeed article by Lezlie Lowe is a deep dive into the world of public restrooms, and how their design and location affect people with a variety of disorders ranging from Peuresis (a fear of urinating where other people are) to inflammatory bowel disease.


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