Welcome to the April Shell Exchange!
Midway through each month, I drop a list of recommended reads. I try to feature winning hermit crab essays (🦀) when possible. But those charming crabbies aren’t always easy to find. So I also make it a point to share pieces on invisible illness.
If you come across an essay or article I haven’t mentioned that you feel warrants attention, drop the link in the comments, and I’ll add it to the rotation next month.
1. “Her Doctor Said Her Illness Was All in Her Head. This Scientist Was Determined to Find the Truth” by Alice Callahan in The New York Times
“Yet despite the gravity of hyperemesis, as it’s colloquially called, doctors are often slow to treat it. Sometimes, they dismiss it as a temporary discomfort, or even a psychological disorder, said Dr. Jone Trovik, a gynecologist and a professor of clinical science at the University of Bergen in Norway.”
2. “How Reading ‘The Secret Garden’ With My Daughter Reframed What it Means to Live Forever” by Meaghan Mulholland in Electric Lit
“An essay I’d written about my condition some months before had appeared on Apple News, after which I received a deluge of advice from concerned readers, urging me to soak my feet in herbs, to accept Christ as my Savior, to contact this specialist in Houston or that one in the U.K. Well-meaning though they all were, my attempt to absorb their proposed solutions and to respond to each individually ended up giving me a panic attack. The truth was that there was no solution—not yet, anyway.”
3. “How I Tried to Stop Snoring, Fix My Sleep Habits, and Confront My Mortality” by Jordan Foisy in The Walrus
“We sometimes get into these little fights when I wake up. She’s had a terrible sleep and is justifiably pissed. She can’t stay mad for long, though, because who is she mad at? It wasn’t me snoring, not really. Certainly, it was my body, my lungs, my soft tissues getting flabbier with age and drinking. Those are the guilty parties. But I wasn’t even there. Ask anybody.”
4. “Christina Applegate is the Fearless Disability Warrior I Needed Growing Up” by Brijana Prooker in PopSugar
“To many nondisabled people, anger isn't an emotion deemed appropriate for the chronically ill. We're supposed to be "humbled" by illness, grateful for the "lesson" that suffering will surely teach us. But I would have loved a "Jagged Little Pill"-era Alanis Morissette type to emulate, a badass disability warrior to give me permission to be angry that my body was betraying me.”
5. “Weak Lungs” by Lily Seibert in The Audacity
“‘Well,’ she said, eyeing the vial with my test before tossing it into a vat with the others. ‘We wait for the news of tomorrow.’
It was a quote from a poem about retaining hope amidst depression, she explained, as we geared the car back into drive. Medical professionals, as I would find out, loved quoting literature.”
6. “Sick All the Time” by Elizabeth Bruenig in The Atlantic
“I thought of Henry Knighton, a medieval cleric who witnessed the Black Death’s scouring of Europe. I once read his firsthand account of the sheep and cattle that went wandering over fields where the harvest had rotted on the vine, crops and livestock returning to wilderness amid the great diminishing of human life. I now reigned over my own plagued realm, having lost this latest confrontation with nature.”
7. “Chronic Pain": The Long Road to Discovery” by Lucy Odling-Smee in Nature
“Although the pain research field is small, and fractured between different specialities, some researchers and clinicians argue that the knowledge and tools are already available to treat people with chronic pain conditions more efficiently and effectively than has been done in the past. What’s needed, they say, is the will to get there — from both the medical establishment and society at large.”
8. “The Unexpected Grief of a Hysterectomy” by Anna Holmes in The New Yorker
“I joked aloud that, with all these comparisons to fruit, my uterus sounded like it resembled a gift basket from Harry & David. The doctor didn’t laugh. Instead, she asked me the question that I’d known she’d ask from the moment I sat down at her desk: Did I want children? I shook my head no. I hadn’t wanted to have kids with my ex-husband, and I believed that, if I was ever ready to have children, I’d be ‘too old’ to have them. It was a decision I had made peace with and was comfortable talking about. I would not be someone’s mother.”
9. “I Hid the Truth About My Mom’s Bipolar Disease” by Lisa Mazinas in Shondaland
“Prior to her diagnosis, my only reference to my mom’s illness was the Jimi Hendrix song “Manic Depression.” I sang along to the lyrics without truly understanding — or caring about — their meaning.”
10. “When confronted with mysterious illness in college, ‘Chronically Catherine’ started writing” by Isabella Cueto in STAT
“‘Probably one of the most terrifying things when I first got sick was if I would ever be able to have a career, to hold a job, to make money for myself and to be independent. And it took many, many years but my column has been behind the scenes doing a lot of that work for me,’ said Ames, who will graduate in about a month.”
11. “The Diagnosis and Surgery I had to Fight For” by Sari Botton in First Person Singular
“But even more than that, innately I knew what the doctor said to be true. For my entire life, it seemed as if my uterus had been trying to self-eject. I’d tried to explain this to one doctor after another, but most dismissed or minimized my pain, including one treating me for endometriosis. He told me that since I first got my period late, at 18, I just didn’t realize that this is what periods feel like. A person with a penis, who had never personally experienced a period, told me that.”
12. “7 Books About the Scam of Wellness” by Ling Ling Huang in Electric Lit
“The illness of wellness lies in wellness that tries to exist within capitalism, participating and becoming an extension of it.”
13. “Body and Soul” by Drew Nelles in The Walrus
“Unless you’re paralyzed, it is difficult to understand the sensation of actually being paralyzed. Your brain tells your body to do something, and your body doesn’t respond. Dan tried to lift an arm; nothing. He tried to kick a leg; nothing. He saw visions of faces—his parents, Jess, maybe even me—and each face was weeping. ‘Help me,’ Dan tried to say, but his voice was weak, and he had difficulty breathing. ‘Help me.’”
As a fun head's up, Substack has started a Notes feature. (Kind of like Twitter but without certain unmentionables)
I'm including their help guide here, in case you're interested. And, yes, my Note is uo and started.
How to join
Head to substack.com/notes or find the “Notes” tab in the Substack app. As a subscriber to Invisible Inks, you’ll automatically see my notes. Feel free to like, reply, or share them around!
You can also share notes of your own. I hope this becomes a space where every reader of Invisible Inks can share thoughts, ideas, and interesting quotes from the things we're reading on Substack and beyond.