Link Roundup: May 18th, 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.

A few years ago, Thunberg’s ascent to fame likely would have been framed in the media as that of an inspiring young girl “overcoming” her disability to become the leader of a worldwide movement. But Thunberg herself makes a different, more radical argument: that she became an activist not in spite of her autism but because of it.

“I see the world a bit different, from another perspective,” she explained to New Yorker reporter Masha Gessen. “It’s very common that people on the autism spectrum have a special interest. … I can do the same thing for hours.” Thunberg discovered her special interest in climate change when she was just 9 years old, and she couldn’t understand why everyone on the planet wasn’t similarly obsessed with preventing it.

Vox recently published an article by Steve Silberman about Greta Thunberg, a 16-year-old climate activist who says her autism helps her in her effort to change people’s minds and actions to save the world.

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I take perverse pleasure in telling people I was raised by a mad scientist. I was. To chronicle my father is to chronicle madness, his and mine. I’ve never really written about him in fiction or otherwise. In fiction, I take bits and pieces of everything I’ve ever seen or read, everyone I’ve ever known, and from those snippets form something new, something I can understand.

I cannot do this with my father. Yes, I’ve borrowed his shirts, his car, and some of the science projects we did. But I could not dream up so complex a man, and I find it impossible to steal him for the page. I need to know the characters I write almost better than I know myself. I’ll never fully understand my father or the way his mind worked, nor can I through fiction absolve him. Or myself.

For Lit Hub, Erika Swyler writes about her father and herself.

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The surgeon says the greatest risk factor for breast cancer is having breasts. She won’t give me the initial results of the biopsy if I am alone. My friend Cara, who works for an hourly wage and has no time off, drives out to the suburban medical office on her lunch break so that I can get my diagnosis. In the United States, if you aren’t someone’s child or parent or spouse, the law does not guarantee you leave from work to take care of them.

Anne Boyer writes about her experience with cancer for The New Yorker.

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Too exhausted to prepare home-cooked meals, we depend on nutritionally deficient, chemically laced packaged meals. Online retailers provide for our material needs with no need to venture out of our single-person residence or even for any human contact. To fend off our isolation-produced depression, we become addicted to drugs and alcohol.

In Yes! Magazine, David Korten writes about the mental health consequences of our current economic system.

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In studying mood memoirs, though, I discovered that the genre has certain limitations. Authors must meet specific reader expectations: readers expect to be inspired, to read about overcoming disability, and to read coherent, truthful narratives. Memoirs that don’t conform to these conventions of inspiration, overcoming, coherence, and truthfulness are often rejected by readers. They either don’t make it to the bookshelves in the first place due to publisher gatekeeping, or when readers don’t find what they’re looking for, they rake authors over the coals.

In “My Disability Story Isn’t For Your Catharsis,” Katie Rose Guest Pryal examines illness memoirs for The Establishment.

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When the nurse announced I’d been suffering from OCD unbeknownst to myself, I didn’t believe her. As with anxiety, I felt the way I always felt. I knew there was no good in protesting, however—arguing further cements madness in the eyes of sane. To prove how not obsessive I was, I tried not to obsess over the fact that I’d been diagnosed without my knowledge or participation. Why hadn’t anyone told me? Had I been treated for OCD without my consent? Was OCD the reason my doctor wanted me to remain on my current medication? Or had an OCD diagnosis been added but without proper treatment? I tried not to think about the power of suggestion. The harder I thought about not obsessing, the more obsessive I felt.

In The Rumpus, Sarah Fawn Montgomery writes about her experiences with OCD.

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Perhaps because of this flexibility, artists and other creatives have found in zines a judgment-free space, and for some, it’s a prime medium for discussing serious, personal issues, like mental health. This point was made late last month when an art exhibition in India, organized by one of Time magazine’s 100 most influential people, Dr. Vikram Patel, illustrated how zines can help break down the stigma surrounding mental health.

Michelle Santiago Cortés shares seven zines that have helped people deal with mental illness in Artsy.

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In the fall of 2008 my friend Olivia called me in tears from a bathroom stall inside a bus station. She was in total distress. She told me that for some reason it was incredibly painful for her to pee. Bewildered, I suggested that she might be experiencing a UTI. That, or a yeast infection. I’d had both; they seemed like the obvious causes of vaginal pain. She shot down both ideas instantly, assuring me that what she was going through was totally different.

In 2015, Amy Pedulla wrote “One-third of Women Are Living with Sexual Pain That’s Ruining Their Lives” for Vice.

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Unless you are the physician of record, keep your goddamn medical opinions to yourself. It is not your job to determine what, if any, treatments are appropriate. Especially when said treatments are painful, debilitating, and expensive, and the other choice is pushing up daisies, kindly remember that it is not your life on the line. Even if you feel absolutely sure you would make this or that choice were you in the patient’s shoes, those are in fact the patient’s feet in there, not yours. You don’t know what you would do. Nobody does.

Well, this is fun! It’s not often I share satire here. Check out “How to Talk to a Cancer Patient without Being a Complete Twit” by Paula Lalish in McSweeney’s Internet Tendency.

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Imagine this: You go to the doctor and routinely feel unseen, unheard, misunderstood. Sometimes you fear you’ve been misdiagnosed. But your concerns are brushed off. You aren’t apprised of the full range of treatment options—the doctor seems to assume they don’t apply to you, or that you can’t take in all the information. Your local hospital is underfunded, the equipment outdated, frequently nonfunctional.

Erika Stallings explains how the American healthcare system is failing black women in O Magazine.

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

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