Pain and Prejudice (from 2018 about misnamed "chronic fatigue syndrome)
(this article is from 2018, but, sadly, the misogyny and sexism at the core of the medical establishment has not changed much.
I was friends with one of the first women diagnosed with ME/CFS in Lake Tahoe, and witnessed her horrific decline.
One of the best story arcs of "The Golden Girls" was Dorothy's journey trying to discover what was wrong with her--CFS)
Pain and Prejudice (from 2018 about misnamed "chronic fatigue syndrome)
3/1/2023 by Julie Rehmeyer
To pay tribute to five decades of reporting, rebelling and truth-telling, From the Vault includes some of our favorite feminist classics from the last 50 years of Ms. For more iconic, ground-breaking stories like this, pre-order 50 YEARS OF Ms.: THE BEST OF THE PATHFINDING MAGAZINE THAT IGNITED A REVOLUTION (Alfred A. Knopf)—a stunning collection of the most audacious, most norm-breaking coverage Ms. has published.
medical-sexism-women-chronic-fatigue-syndromeWinter 2018.
From the Winter 2018 issue of Ms.:
I couldn’t turn over in bed. My head would lift a bit, I could get part of a shoulder up, but even when I groaned with effort, my spine didn’t budge. My muscles weren’t responding to my brain’s requests. My brain itself wasn’t functioning so well either. It felt swollen, as if it were trying to push out my eyeballs. Speaking required spearing the words one by one before they scampered out of my head. Thinking hurt, so mostly I didn’t do it, retreating into a twilight zone, alive but not living. Until a year earlier, I’d managed to live a full if constrained life in spite of my decadelong illness. I’d applied every bit of determination I could muster to build my career as a science writer, to be a good partner, to hold on to my dreams and ambitions, despite getting stuck in bed unpredictably for days or weeks. But now I was too sick to even care for myself. I had run out of medical treatments after going to the top specialists in the world. Not only that, but I was running out of money, and I’d watched fellow patients repeatedly get turned down for disability payments. I felt as though I’d fallen off the edge of the earth.
The very name of the illness that had so totally derailed my life sounded like a joke, as if it were nothing more than ordinary life in our too-fast age, the complaint of someone too lazy to keep up. The words stung my lips with insult: “chronic fatigue syndrome.”
Though I felt like I was suffering in my own private hell, more than a million Americans shared my fate. Worldwide, the number is estimated at between 17 and 30 million. Though the disease has been characterized as the “yuppie flu,” it is more common in poor people. It occurs in all racial groups and ages but most of us are women—around 80 percent.
Hidden in these numbers is astonishing suffering. Patients with chronic fatigue syndrome (CFS) have the lowest quality of life and greatest disability of any disease tested, including lung disease, rheumatoid arthritis and heart disease. A quarter of us are homebound. In 2014, a quarter of Canadian patients had less than $20,000 a year in income, and more than a quarter lived with food insecurity, the highest rate of any disease. Because CFS can disable people for decades, its economic impact is huge: In the U.S., it accounts for between $18 billion and $24 billion per year in medical costs and lost wages.
But public health agencies have treated chronic fatigue syndrome as if it were the jest the name suggests. The Centers for Disease Control and Prevention (CDC) chose and promulgated that insulting name even though internationally the disease is more commonly known as “myalgic encephalomyelitis” or ME—literally meaning “muscle pain and inflammation of the brain and spinal cord.” The CDC then worsened its mistake by using absurdly broad definitions of the disease that include many people who are chronically tired but don’t have CFS at all, scrambling the research and confusing doctors. In particular, their definitions don’t require the hallmark symptom of the illness: Even slight exertion can exacerbate all the other symptoms of the disease. And medical schools rarely train doctors about ME/CFS at all, so few patients can get skillful medical care. The very name of the illness that had so totally derailed my life sounded like a joke, as if it were nothing more than ordinary life in our too-fast age, the complaint of someone too lazy to keep up. The words stung my lips with insult: ‘chronic fatigue syndrome.’
Julie Rehmeyer wrote a memoir in May 2017, Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand, which describes navigating the science and politics of poorly understood illnesses, based on my experience with chronic fatigue syndrome. (Kerry Sherck)
. . . . .
medical-sexism-women-chronic-fatigue-syndrome(Jason Frank / Shella Films)
. . .
Katie Steward was once a serious horse rider. Now she’s too ill to even eat. Light, sound and touch can be unbearable for her.
https://msmagazine.com/2023/03/01/medical-sexism-women-chronic-fatigue-syndrome/
