Endometriosis, a painful condition in which endometrial tissue grows outside the uterus, is poorly understood and hard to diagnose. In this piece for The Baffler, Jess McAllen describes what it’s like to navigate the confusing and toxic online world of endo care, especially the (mis)information found in community forums and the content shared by social media-savvy surgeon-influencers.
All told, the average time from onset of symptoms to a confirmed diagnosis is over seven years.
Seven years is a long time. In the absence of clarity or relief, what’s a patient in pain to do? Recently, a cottage industry operating mostly on social media has sprung up to address this longstanding lack, offering advice and services to thousands of sufferers who turn to the internet for answers. On Facebook, there is Nancy’s Nook, a two-hundred-thousand-member private group run by a retired nurse named Nancy Petersen—the “Nancy” referred to in the Endometriosis Summit video—who maintains an elite list of personally vetted “Nook surgeons.” Then there are the surgeons themselves, who sometimes comment on Facebook support pages, or, like Vidali, entice people via Instagram. Many of these self-identified “endo specialists” are out-of-network, which means the cost of their procedures is often out-of-pocket, without a guarantee of diagnosis. Or of relief: the recurrence rate of endo tissue after surgery can be as high as 67 percent, yet some surgeons promote their operations as a panacea in jaunty posts and videos. The incentives of social media have collided with the complexity of endometriosis to create an environment rife with false promises and conflicting information.
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