auto-immune diseases Archives - Longreads https://longreads.com/tag/auto-immune-diseases/ Longreads : The best longform stories on the web Fri, 26 May 2023 14:35:13 +0000 en-US hourly 1 https://longreads.com/wp-content/uploads/2017/01/longreads-logo-sm-rgb-150x150.png auto-immune diseases Archives - Longreads https://longreads.com/tag/auto-immune-diseases/ 32 32 211646052 Paging Dr. House: A Medical Mysteries Reading List https://longreads.com/2023/03/28/medical-mysteries-reading-list/ Tue, 28 Mar 2023 10:00:00 +0000 https://longreads.com/?p=188379 Half a plaster mask of a human face and a syringe — both magenta — sit against a bright blue backgroundOnce upon a time, I wanted to be a doctor. Never mind my terrible grades in all things science. Never mind that I decided this in my second year of college, after deciding that the music school that I’d wanted for years wasn’t for me. It was 2006. It was the age of Dr. Gregory […]]]> Half a plaster mask of a human face and a syringe — both magenta — sit against a bright blue background

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Once upon a time, I wanted to be a doctor. Never mind my terrible grades in all things science. Never mind that I decided this in my second year of college, after deciding that the music school that I’d wanted for years wasn’t for me. It was 2006. It was the age of Dr. Gregory House. 

I love a good medical drama. My mother, a nurse, raised me on ER and General Hospital, always pointing out all the plot lines that “would never happen in real life” but were really cool to watch on TV. My mother credits ER with pushing her toward her decades-long career in the operating room. So when I, a poor lost college sophomore who had gone to school to play French horn (French horn!) and found it wasn’t what I thought it would be, I did what I knew best to do and turned to TV. And on TV, I found House

House had it all: a painkiller-addicted doctor with a smart mouth and a slap-worthy face, medical mysteries solved via CSI-style case-of-the-week format, and a beleaguered crew of sidekick physicians whose instincts were never quite as good as House’s. I would spend each episode studying the setup and trying to unravel what the medical culprit could be before the ultimate reveal. Instead of realizing that what I might want to be was a writer with a good plot, I missed the mark and decided I wanted to be a doctor. 

Reader, I did not become a doctor. (That fizzled out after one year of biology classes and a stint working in a local nursing home.) But I remain a lifelong medical mystery buff. Here, then, are a few of my recent long-form favorites — enjoy the game of whatdunnit. 

Swamp Boy (Kris Newby, Now This News, October 2022)

One day, a 14-year-old boy with no previous physical or mental issues informs his parents that he is the “evil, damned son of the devil” and he needs to kill himself before he destroys them all. Thus begins the onset of a massive medical manhunt to uncover exactly what is causing the boy’s psychosis and physical symptoms, which include OCD, shortness of breath, chronic pain, frequent urination, intense headaches, the belief that he had green vines growing under his skin, the belief that he was a bird, and the belief that the family cat was ordering him to kill everyone around him — including the family fish. 

Complete with vivid graphic-novel-styled art illustrating some of the reported hallucinations, this piece has it all, including a father’s fight against the medical establishment and an ending you’ll never see coming. In other words, it’s about as close as one can get to a real-life episode of House

Meanwhile, back at home, now more than seven months after his son’s first psychotic breakdown, Scott could finally clear his mind, and began to focus his analytical skills on Michael’s case.

To the medical experts, his son had been a ten-inch-tall stack of paper annotated with clinical notes. Each expert had examined one piece of Michael—his brain, his stomach, his heart, his immune system, his gut, his spine, his skin, his eyes. Scott, meanwhile, was determined to analyze Michael as a whole. “I knew I had to figure out what was wrong, or I’d lose my son,” he said.

It was during one of his many conversations with doctors about Michael’s potential treatment that Scott had an epiphany: Maybe no one could help their son because they were treating the wrong illness.

What Happened to the Girls in Le Roy (Susan Dominus, The New York Times Magazine, March 2012)

On an ordinary day in Le Roy, New York, a high school cheerleader begins twitching. Another cheerleader develops tics a week later. And another after that; and another after that. It spreads past the cheerleaders and on to the art kids, a boy, kids in neighboring schools. Is there something in the water? Is it those mysterious bins labeled with hazardous waste from a nearby factory? Is it that strange orange ooze coming up from the ground on the football field? Or is it all in their heads? 

Featuring media vans, Dr. Drew appearances, familial finger-pointing, women’s least favorite H-word (hysteria), and a cameo from legal crusader Erin Brockovich, Dominus’s reporting takes us into the mystery that consumed a small Northeastern town, while still making the science accessible to lay readers. 

How could one person’s illness be reflected in another person’s neural pathways, playing a trick on consciousness, convincing the host that it originated in her own body? In the last decade, scientists have begun to explore the concept that regions in our brain once thought to activate only our own activity or sensations are also firing what are known as mirror neurons when we witness someone else perform an action or feel a sensation. Mass psychogenic illness could be thought of as the maladaptive version of the kind of empathy that finds expression in actual physical sensation: the contagious yawn or sympathetic nausea or the sibling who grabs his own finger when he sees his brother’s bleed.

The Pre-Pandemic Puzzle (W. Pate McMichael, St. Louis Magazine, August 2007)

No, not that pandemic. Pate McMichael looks back at the teenager who may have died of AIDS more than a decade before HIV gripped the nation. But where did the virus come from? How did a young boy who was not a drug user, had not left the state, and never received a blood transfusion contract a virus that wouldn’t be detected in the United States for another decade? Furthermore, why did the news break in the mainstream media before the scientists who first identified the strain even had a chance to understand what was in their lab?  

This piece combines two of my favorite things: a medical mystery and an ethical quandary. It pulls back the curtain on how the scientific establishment studies new diseases and how and when they release that information to the public. Add in that historical lens — doctors seeing a new and potentially terrifying disease in the 1960s, the echoes of Hurricane Katrina in Pate McMichael’s 2007 writing — and you’ve got a winner. 

A few years later, in 1973, Elvin-Lewis and Witte presented Robert R.’s case at a lymphology conference and published a journal article on his systemic chlamydia in The Journal of Lymphology. The paper they presented actually raised as many questions as it answered. Why had Chlamydia spread throughout the body, when it normally stayed near the port of entry? And why did this young man have these purplish, malignant lesions called Kaposi’s sarcoma, as the alert pathologist had discovered during the autopsy? Kaposi’s sarcoma was known as an old man’s skin disease, typically affecting Jews and Italians. The pathologist decided that Robert R. had an African variant that affected children and primarily targeted the lymphatic system. That decision suggested an intriguing question: How did a black 15-year-old from St. Louis acquire Kaposi’s sarcoma?

Doctor Donor Fertility Fraud (Kudrat Wadhwa, The Verge, June 2022)

A woman seeking her familial DNA for a clinical trial learns that not only is her father not her biological father, but her bio dad is actually her mother’s fertility doctor. All together, now: Yikes. Worse, she finds out that she is not alone; several other children conceived via fertility clinics have also discovered that their fertility doctors are their real fathers. One doctor, featured in the Netflix documentary Our Father, sired over 90 children. 

This piece grapples with ethical questions and hard-to-draw lines: Is it medical rape to inseminate someone with fraudulent sperm? Do these doctor-fathers owe their scores of children anything? Should these children, once the fathers are discovered, seek a relationship with their bio dads? And what if the bio dad wants nothing to do with them? What if these men fail to see their behavior as a violation? 

Not a mystery, but still riveting — and a good case study around the meaning of consent. 

Not everyone who is watching Our Father has a personal connection at stake, but they are drawn in regardless. Fertility fraud rivets audiences because it channels the mysterious allure of genetic inheritance, crossing it with the perverse power relations between a doctor and their patient. Conception — so often an intimate act — is made impersonal and medicalized in the context of the fertility clinic, and then made intimate again through the abuse of the doctor-patient relationship. 

Every child of fertility fraud is a baby who was desperately and deeply wanted by their parents. The exploitation of that desire is devastating; the fact that the body becomes evidence of the transgression is all the worse.

Sick To Our Stomachs: Why Does Everyone Have IBS? (Natasha Boyd, The Drift, June 2022)

If Rule 34 of the internet is that there exists porn for every possible interest, then Rule 35, according to Jo Piazza of the podcast Under the Influence, is that there exists an influencer for every topic — including diarrhea. 

Why yes, Hot Girls do have IBS, and you can hear all about it on TikTok, Instagram, and pretty much anywhere else there is to make money off of “bloating positivity.” (Truly, if there was ever a sign that we really are in late-stage capitalism, this has to be it.) But really, why do so many hot girls (and other mortals) have IBS these days? This essay takes a look at the history of digestive discomforts, all the way back to the 1700s when The Gentleman’s Magazine examined why all the “well-to-do Ladies” complain of stomach “[d]iagnosticks … neither visible or certain” and to our new era of “normalizing bowel function” (finally!).

It has a name, but not much else. IBS is a so-called “functional disorder,” meaning that it is a condition without identifiable cause. Unlike with inflammatory bowel diseases such as Crohn’s or ulcerative colitis, patients diagnosed with IBS have no medically detectable signs of damage or disease in their digestive tracts. Essentially, IBS is diagnosed when tests come back normal; it’s what’s written down on a chart when there’s nothing else left to identify. Many people with IBS struggle with the implication that their symptoms are made up — especially as IBS both relies on self-reporting and presents differently from patient to patient. It is a catch-all term for a variety of gastrointestinal ailments, including cramping, bloating, intestinal gas, diarrhea, and constipation. Statistically, it affects more women than men, and is most common in people under 50. Regular exercise, cognitive behavioral therapy, yoga, and meditation have all been shown to alleviate symptoms. Even so, “IBS is not a psychiatric illness,” says Dr. Arun Swaminath, director of the inflammatory bowel disease program at Lenox Hill Hospital in New York City, “though stress and depression can make symptoms worse.” Despite its growing prevalence — IBS is the most frequently diagnosed gastrointestinal disorder — some doctors and digestive specialists question its utility as a medical construct, since the diagnosis does not elucidate anything about patients’ physiology or the causes of their discomfort. It is, however, very profitable: in the United States, the annual medical costs associated with IBS exceed $1 billion.


Lisa Bubert is a writer and librarian based in Nashville, Tennessee. Her work has appeared in The Rumpus, Texas Highways, Washington Square Review, and more.

Editor: Peter Rubin

Copy Editor: Krista Stevens

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