Hi all! It’s Jay. I plan on doing a link roundup every Friday and this is the second one. If you encounter a link you think I might want to share, please tweet it at me or Chronically Lit.
*
Given that 117 million people in the United States live with one or more chronic illnesses, we’re more than likely encountering someone in our workplaces, our homes, and our everyday lives who is navigating the ins and outs of sickness and the pain that accompanies it. Chronic illnesses are especially pervasive among women, and thanks to medicine’s long history of paternalism and ambient sexism, doctors regularly dismiss or disbelieve women who suffer with unexplained pain.
I can’t believe I forgot to link the Bitch Media “In Sickness” series last week! I first saw this series when I was having early ideas about Chronically Lit, and the series was such an inspiration to move forward. I want our site’s essays, book reviews, and interviews to have a similar feel. The series includes articles on chronic illness in film, receiving and dealing with an endometriosis diagnosis, and more.
*
The gaps leak sound waves into my body and allow body noises to echo too loudly in my ears. To diagnose me, the doctor asked if I could hear myself blink. Yes, I said. Can you hear your heels when you walk? Yes. He rapped a tuning fork on my ankle. Can you hear that? No. That’s a good thing, he said.
Thanks to a twitter follower for sharing this Kate Lebo essay in the New England Review. Lebo describes growing up with hearing-related issues, and not realizing she had hearing loss until others told her. Her story is interesting, her language poetic. I enjoy how she chose to break up the essay into titled sections. I especially enjoyed reading about how her hearing issues foster creativity in her poetry writing.
*
Google “stock images of women with excruciating menstrual cramps,” “women having nervous breakdowns,” “women on hospital gurneys.” Make several of the women black even though your Google search will not produce these results. String them together on a chic laundry line with clothespins and hang it on your mantle, or maybe paste them into a photo collage, digital or print. Splatter the collage with blood. Untwist the women’s ovaries and take them away. Sew up their vaginal openings so their private parts look like the deformed hermetic triangles of Barbie dolls. You now have a visual rendering of life with endometriosis. It is a poor approximation.
I don’t know why seeing an essay on chronic illness in The Paris Review excited me so much. I supposed it’s because the tide seems to be turning; now that I’m looking for illness-themed publications, I’m finding them. Everywhere. That said, Nafissa Thompson-Spires’ essay on her experiences with endometriosis is relatable and beautifully written. Who wants to review her new book for us?
*
I’ll come out and say it: I have a chronic stomach condition. The kind that makes other people uncomfortable when I discuss the details. And, because I look able-bodied, it’s also the kind of condition that can create a lot of suspicion and second-guessing within the workplace.
My former colleague Nancy Roque has an article out in Her Magazine about the challenges of working with a chronic illness. While I feel so bad about what she went through with a past employer (not the employer we shared, btw), I think, unfortunately, her story is pretty common.
*
Have you seen Unrest yet? The documentary about Chronic Fatigue Syndrome is on Netflix. A friend recommended it to me, and although I cried at many parts of it, I’m grateful I watched it. I’ll probably review it soon. There’s so much to say–filmmaker Jennifer Brea makes this film while struggling with CFS/ME herself, and in addition to interviews, turns the camera on her own life, struggles, and relationship. Groundbreaking.
*
The Disability Visibility Project® is an online community dedicated to recording, amplifying, and sharing disability media and culture.
I spent some time digging into The Disability Visibility Project by Alice Wong and there’s so much, I barely scratched the surface. First, they post great things and have an extensive following on twitter. On the website, they have a podcast, a cool photo project anyone can participate in, and more.
As I sifted through the site, I kept wondering, what is the line between “disability” and “chronic illness?” Is “disability” visible and “chronic illness” invisible? Is “disability” reserved for those who can’t work full-time? Those who qualify for government disability assistance? I’d love to read a thoughtful essay on this topic. They seem to be two groups that are often talked about separately, but of course overlap, and even where there is little overlap, would probably be best off banding together.
*
The Paper Gown, powered by Zocdoc, covers health and healthcare with a focus on patient experiences — inside and outside the exam room, before check-ups and after surgery, across all states of health. We strive to tell stories that help patients feel informed, empowered and understood.
Zocdoc, sort of a Yelp for doctors, has a new publication called The Paper Gown, and some of the content is pretty good. Their “voices” category is the first-person essay section, with titles such as “Please Stop Diagnosing Me As Fat,” and “Living In NYC When You’re Hypersensitive To Sound.” Their other categories involve how-to advice (I enjoyed “How to Get Shots If You’re Terrified of Needles” as someone who has sorta-kinda overcome a syringe phobia herself), patient culture, and . Does anyone know how to pitch them? The more I read, the more I’d like to write something for them.
*
My mom was always saying I was too sick for school. When I was six and my parents divorced, I missed half the first grade because she was convinced my stomach pains were caused by something deadlier than lactose intolerance. To her, a cold was pneumonia… unless it was actually pneumonia, in which case it was something worse.
Marisa Gwidt’s essay on Munchausen by proxy in Narratively is heart-wrenching and fascinating. She walks us through growing up with a mother her always thought she was sick, and working through the intense self-doubt that caused, even into adulthood.
Jay Vera Summer is the Editor in Chief of Chronically Lit.
#bitchmedia #newenglandreview #endo #bitchmagazine #deafness #unrest #syringephobia #thepapergown #hearing #narratively #nafissathompsonspires #workplace #munchausenbyproxy #jenniferbrea #hermagazine #disabilityvisibilityproject #zocdoc #theparisreview #alicewong #nancyroque #katelebo #cfsme #chronicfatiguesyndrome #chronicillness #needlephobia #deaf #endometriosis #insickness #hearingloss #marisagwidt
Comments