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By Mary Carpenter
“I’VE personally been ridiculed, heckled and coughed on for wearing my N95 [mask],” writes author Madeline Miller in a Washington Post essay titled “Long covid has derailed my life.” A “first-waver”— infected in February, 2020—Miller describes the stigma experienced over three years of debilitating fatigue with PEM, the Long Covid condition called post-exertional malaise that has made her “too tired to answer emails.”
For “contested diseases”—illnesses for which the existence and/or biomedical origin has been debated— stigma adds layers of suffering, according to a journalists’ Guide on how “to report on these “with accuracy and sensitivity.” With symptoms blamed on everything from the sufferer’s imagination to neuroses and lack of will power, the contested illnesses in recent news include post-partum depression and conditions related to obesity—along with the Guide author’s symptoms of ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) similar to those of PEM.
“The United States has always been a terrible place to be sick and disabled,” writes Miller, author of the bestsellers Circe and The Song of Achilles. “Ableism is baked into our myths of bootstrapping and self-reliance.” Miller explains that, because “long-haulers who are reinfected usually get worse,” she always wears a mask—despite friends like one who acted personally insulted, demanding: “How long are you going to do this?”
“For new mothers, relief from an old stigma” headlined the print story by physician and Washington Post health writer Leana Wen. In response to the July FDA approval of the first drug that specifically treats postpartum depression, Wen confessed that it took “months before I finally sought help…stigma was at the core of what prevented me.”
“The [new] medication…reinforces the crucial message that post-partum depression must be treated like any other medical ailment,” writes Wen. Previously, one reason sufferers hesitated to talk openly about postpartum depression was that standard treatment involved a 60-hour, in-hospital IV infusion. (Most anti-depressants in pill form, in contrast, take two to six weeks to begin working.) Although the IV regimen is arduous while caring for a new baby, zuranalone has the significant drawback that women must stop breastfeeding for those two weeks.
Issues of personal responsibility and will power especially affect conditions of overweight and obesity. Contends Chevy Chase, Maryland, health writer M.K., “If you’re fat and fatness is a disease, you are by definition defective—and fatness is automatically stigmatized. While being fat increases the risk that you will get sick from other causes, it is not a sickness itself.” The AMA, on the other hand, in 2013, recognized obesity as “a disease state requiring treatment and prevention efforts…to improve research into the causes of obesity.”
In addition, twin and adoption studies show that genetic effects contribute as much as 70% of the variation in obesity, while physiologic changes that come with weight gain also play a role. And, though controversial, the “obesity paradox” refers to the finding that some people with related illnesses such as heart disease —along with a BMI in the obese or overweight range —have better short- and long-term health outcomes than those with a normal BMI, due at least in part to the physical fitness level of the individual.
“Obesity should be treated as a serious illness given its connection to other problems…an increased risk of cardiovascular disease,” specialists told the Post, after a new study showed reduced risk of heart attack for patients taking the new weight-loss drug Wegovy. The study highlights the need for insurance reimbursement for these new drugs when prescribed to treat obesity, rather than diabetes for which they are approved and reimbursed. Meanwhile, insurance covers bariatric surgery, which has been shown to reduce cardiovascular risk.
“Notions of health are highly context-dependent,” writes British bioethicist Jackie Leach Scully. Studies show that “whether people believe themselves to be ill varies with class, gender, ethnic group and less obvious factors such as proximity to support from family members…what counts as a disease also changes over historical time.” Scully notes that osteoporosis, following official recognition by the WHO as a disease in 1994, “switched from being an unavoidable part of normal ageing to a pathology.”
The consequences of recognizing osteoporosis as a disease impacted “sufferers’ sense of whether they are ‘normally old’ or ‘ill’ but more concretely…their ability to have treatment reimbursed,” explains Scully. “Another example is homosexuality, which has travelled in the opposite direction to osteoporosis, through medical territory and out the other side.”
For me, although the disease arthritis, which is evident on scans, causes my inflammation, people continue to remind me about changes in diet I should make to counter this process. On the other hand, I still find myself instinctively stigmatizing contested illnesses: reading about the debilitating fatigue of successful authors I admire such as Miller—and before her, Seabiscuit author Laura Hillenbrand—I was surprised to feel new respect for the seriousness of these conditions. Now, still trying to staunch my tendency to stigmatize, I am focusing on the crucial next step: sympathizing with sufferers of contested diseases.
—Mary Carpenter regularly reports on topical subjects in health and medicine.
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