May Shell Exchange
Invisible Illness, Mental Health, and Autism - Oh, My!
Welcome to the May 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.
While it IS Fibromyalgia Awareness Month, it’s also Mental Health Month and Autism Acceptance Month, so (no surprise) you’ll see that reflected here.
1. “I Tried to Forget My Whole Life. I’m Glad I Failed.” by John Paul Scotto from Longreads
“The difference between me and that guy was that he could control his emotions. I had meltdowns. I’d get heated about bad hands or I’d want to win faster. Then I’d break my betting rules, bluff hugely, and get called on it. I’d often spend weeks methodically earning thousands of dollars, and then, during a meltdown, I’d put all of my winnings on a single table and lose it in an instant. I couldn’t account for why I was doing this. Some nights—at the height of my addiction, which corresponded with periods of extreme social isolation—I’d try to stop gambling and sleep, but my arms and legs would flex and quake at the thought of playing cards, and I’d get out of bed and attach myself to the laptop until sunrise.”
2. “To Polly Atkin, ‘Diagnosis is Like a Wedding” by Jacqueline Alnes from Electric Lit
“Everybody in the entire universe who is chronically ill, will have had someone say to them, ‘Well, are you better yet?’ Having to continually deal with that and say, no, I’m not better, I’m me, an ill person and will continue to be an ill person. I wanted to write about that and what it means to reconcile yourself to that but also to live the best life you can within that paradigm of not getting better and not being cured, and finding a way for that to be okay.”
3. “Autistic Literature Will Flourish When We Stop Insisting That Writers Qualify Their Autism” by Rafael Frumkin from Electric Literature
“But lately there’s been a steady seepage of discourse into the realm of the first-person account. The digital critic has moved away from battles against autism moms and ABA therapy and has started to set their sights on other autistics: Are we to accept self-diagnosis as valid? What about a formal diagnosis, but from a doctor who doesn’t use the same set of DSM criteria as the one who diagnosed me? Does the portrayal of autism in this piece of media strike me as realistic, or dangerously problematic? Is this person even qualified to be telling a story from an autistic point of view? And the answers to these questions, time and time and time again, can typically be boiled down to four words: You’re doing it wrong.”
4. “ADHD is often overlooked in girls and women. They need help, too” by Michael Morse and Kathleen Nadeau from STAT First Opinion
“Since girls are less likely to be disruptive in class and at home, they are less likely to be identified as a problem by teachers and parents, and so less likely to be referred to a clinician for diagnosis or treatment. But the fact that girls and women with ADHD may not be a problem for others doesn’t mean that they are not suffering in silence.”
5. “Insatiable: A Life Without Eating” by Andrew Chapman from Longreads
“When my doctor gave me the option, I chose to guzzle the formula during the day to have extra hours without the tube at night (drinking the volume of formula required for nutrition would have been nearly impossible). I was also allowed to drink clear fluids, so my parents kept the fridge stocked with lemon-lime soda and JELL-O. But, without that shackle of a tube, I would not have stayed alive as a preteen.”
6. “9 Books About Invisible Disabilities” by Marisa Wright from Electric Lit
“That’s why it’s so important that the publishing industry has recently started supporting chronically ill and disabled writers in sharing their stories. In the books that follow, writers with a variety of diseases and conditions depict the multiplicity of experiences that come with living with an invisible illness or disability. In doing so, they offer personal insights and unique perspectives that finally give voice to a group of people that has been ignored for too long.”
7. “Who coined the term ‘neurodiversity?’ It wasn’t Judy Singer, some autistic academics say” by Sara Luterman and Kate Sosin from The 19th
“In an email to The 19th, Singer said she did not coin the concept of neurodiversity or neurological diversity, but that she only coined the word ‘neurodiversity’ itself. She also accused Dekker of not understanding the academic process.”
8. “Other Mother” by Coleen Baik from The Audacity
“It was as if she’d been blasted, churned in a storm, then flung over an unfriendly landscape before being hastily recollected and reassembled. The pieces were mostly in the right place, but the edges didn’t quite line up, a darkness visible where small fragments had gone missing.”
9. “After My Autism Diagnosis at 47, I Revisited My Life With New Eyes” by Mask Off from The Doe
“My initial reaction was one of relief. Suddenly, decades of struggles and awkward moments made sense. I wasn’t stupid or incapable, as I’d often told myself. I was just autistic. I felt validated and seen in a way I’d never been previously. I thought, “Now I can explain myself to others and they will understand me.” I was unprepared for the rollercoaster of emotions that would follow, including frustration with a world that doesn’t understand autism.”
10. “I Struggled As a Young Mom. I Had No Idea I Had Autism” by Alexandra Nevermind from The Doe
“Some people close to me didn’t really know how to react to my news. My mother said, ‘No, I don’t think you are,’ but she also said that when I came out as gay. My brother didn’t seem too interested. Of course my Gen Z daughters were great about it. They were like, ‘Congratulations, mom. This is awesome. This is going to really change your life to to have this information and this insight about yourself.’”
11. “Am I ‘Blue”? by Eva Tenuto from First Person Singular
“If she said the word blue again, I thought I'd kill myself. Of course, that’s hyperbole. But I did fantasize about it. Sometimes I thought of little else. In fact, I came up with 365 unique ways to do it -- one for each day of the year.”
12. “People like me with bipolar disorder must help shape research and clinical care” by Kay Redfield Jamison
“Humans are a storytelling species; if we hear the stories of those who have been depressed or who have experienced mania, we get a more visceral sense of what psychological suffering means. This can not only bring personal understanding and empathy, but influence medical practice, government policy, philanthropy, and research priorities.”
13. “The Curl of Time” by Sarah Stankorb from Longreads
“Families often follow patterns, and although it was too soon, it was my turn to start enacting my mother’s roles. When her own mom had gotten too frail to live on her own, my mom had taken her in, giving her my childhood bedroom. I couldn’t do the same with my parents—I would not subject my children to formative years with my father in their space, his voice whipping lasting pathways into their minds.”
14. “For Too Many Mothers, Anxiety Is a Constant State of Mind” by Carrie Mullins from Electric Lit
“After my son was born, I pickled vegetables, froze coffee, and kept our pantry stocked with enough chickpeas to last five years. I hid my fear under the pretense of the pandemic, but I continued to hoard even after supply chains were back to normal, even though I knew I wasn’t preparing for lockdown but something else, something still to come. One day, I assembled a go-bag, then stuffed it under the couch and didn’t mention it for weeks, flushed with embarrassment at my precaution. I finally blurted out its existence to my husband when I became worried that something might happen to me and he wouldn’t know we had one or where it was.”
15. “I Don’t Know How to Live if My Anorexia Dies” by Billy Lezra from Electric Lit
“I won’t disclose my anorectic methods here, because I don’t want this essay to double as a manual/weapon. This is not an essay about redemption: it’s about resisting recovery the way someone resists drowning—so violently I might drag my rescuer underwater, too.”