archived 21 Feb 2020 13:36:27 UTC
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On Oct. 8, Anelise Dao posted a picture to Instagram of herself smiling in the sunshine. She’s wearing a black crop top, and her purple ombré floats to her left shoulder. Intricate black tattoos and long pink nails decorate her fingers, which hold a delicate white rose. At first glance, she could be at Coachella.
But below the smile, the shirt, the nails, and the rose, several large white bandages cover Dao’s stomach. A feeding tube protrudes above her navel. Her bracelets are a mix of dangling silver charms and white hospital bands.
“I am beautiful,” she wrote, “Lines, tubes, scars and all.”
The post, a mashup of the bleak reality of illness and the motivational conventions of Instagram, nails the aesthetic of social media’s latest conquerer: the chronic illness influencer.
Instagram and YouTube accounts dedicated to long-term medical conditions are gaining hundreds of thousands of followers. They share grim, and sometimes glamorous, pictures from the hospital, detailed health confessionals, and words of inspiration.
Instagram users have tagged posts with #chronicillness 2.6 million times. YouTube
videos from patients about changing feeding tubes rack up millions of views. Hospital-bed snapshots like Dao’s accrue thousands of likes.
The explosion reflects an increase in chronic illness. The majority of people in the United States—60
percent, according to the U.S. Centers for Disease Control—now suffer from one such sickness, up from 50 percent a decade
ago. Just under half the population has been diagnosed with multiple
conditions. Ongoing illnesses already account for the majority of health care spending across the globe, and the
World Health Organization expects that to grow exponentially in the years to come.
As more people are getting sick, they’re talking about it more often online, especially on Instagram and YouTube. They’re finding community, followings, business opportunities—and skeptics and trolls.
Influencers say the chronic illness community—“
spoonies,” as they refer to themselves—has grown massively in the past
three years.
“I didn’t know what the term ‘chronic illness’ or ‘invisible illness’ meant before 2016,” said Jameisha Prescod, who runs @youlookokaytome (9,680 followers). In mid-December, she
wrote an Instagram post about meeting a fellow lupus sufferer: “Do you remember the first time you spoke to someone else with the same chronic illness as you?… It’s so hard to explain. It’s almost euphoric.”
Kassandra Shore writes about Ehlers-Danlos Syndrome, a group of disorders that produce defects in the body's connective tissues, at @just.my.genes (4,700 followers). She said she started her Instagram page as a way to update friends and family on her condition last July after a major surgery. Well-meaning relatives couldn’t understand why she would seem fine at a party but need to go to the hospital so often. The fear of publicizing such an intimate journey kept her from opening the account to the public for months. When she did, fellow EDS patients started messaging her, and her following grew.
Shore posted a
collage of her most-liked photos from 2019 in late December. All but one showed her in a hospital—standing beside an IV pole, in a hospital bed intubated after surgery, or close to the camera with half a dozen tubes curving into her chest.
“This is so fascinating to me bc all but one picture is of me at my worst possible health. This year has kicked my butt so much and I don’t share everything,” she captioned the display. She went on to give details about the difficulties the last year had posed, particularly an open heart surgery.
Dozens of commenters poured forth with support and their own experiences. “
i had the hardest in every way year whit [sic] my daughter who has cf [cystic fibrosis],” one wrote. Another: “Here’s to a better 2020. You are an inspiration to me in how you have handled everything.”
Other pages like the Chronic Love Club (@chronicloveclub, 33,600 followers) take submissions from followers and post them to showcase different experiences. Sick Sad Girlz Club (@sicksadgirlz, 7,650 followers), a similar account, featured Lena Dunham talking about her obsessive compulsive disorder, endometriosis, EDS, fibromyalgia, and chronic Lyme in
April 2019 (“I have never been well,” she wrote).
Some pages share
memes about the struggle (“Me: I’m exhausted. Fitbit: You’ve taken 11 steps today”) and
tranquil inspiration (“You can do everything right and still have a flare up”) as palliatives to the daily frustrations and anxieties of sickness. There’s no shortage of medical advice.
Melody O’Lander, who started @butyoudontlooksickofficial (4,795 followers) in October to talk about chronic inflammatory demyelinating polyneuropathy (CIDP), said her followers will often ask if she knows anyone knowledgeable about their conditions. Their doctors often don’t believe they’re sick with anything beyond anxiety, she said, so they turn to the internet for solidarity.
“My page connects people with the same diseases. If there are 15 people I find with EDS I’ll put them into a group DM. People have gotten more definite diagnoses or known what tests to run because of the group, and they end up more educated and advocating for themselves more,” O’Lander said.
Many of the influencers say they have conditions that are rare, have no outward manifestation, or have been dismissed as a true illness by some in the medical establishment.
And O’Lander said she started her page, in part, to reach skeptics. “People are suffering from illness, but other people only see the benefits: a plaque, taking a test later. We’re trying to share the reality of it—the tubes and the day-to-day,” she said.
But not everyone believes that reality is, well, real.
Dao’s midriff-baring photo got 1,000 likes, but her posts don’t always receive such a warm reception.
Members of the 26,000-member Reddit forum r/IllnessFakers are doubtful the 20-year-old Illinois State University student and model—and other very public members of the chronic illness community—are sick at all. Their posts are full of claims about influencers they know only from the internet. “She pulls out tubes and gives herself infections,” one wrote of Dao in mid-November, citing no evidence. “Her goal seems to be sepsis.”
The Redditors criticized Dao for
bragging about her father’s purchase of three cars in 2019 while she simultaneously promoted an Amazon wishlist so Instagram followers could buy her gifts.
Another post on the forum speculated she sent an anonymous rude message to herself so she could clap back and solicit pity. Dao, who says she suffers from a range of conditions including gastroparesis and uses feeding tubes, declined to be interviewed. She’s previously called the Reddit posts “doxxing,” threatened police action, and indicated the public dissection of her medical status has taken a severe toll.
“I don’t know what the fuck I did. Why do you guys hate me so much?” she asked in a Jan. 3 Instagram story. “I can’t take the bullying any more—the Reddit, the mean comments… Are you guys trying to push someone to suicide? Because that’s exactly where this is going to go if this continues.”
On Feb. 15, Dao cleared her Instagram but for a single post: herself in a plain white dress saying goodbye. She told her 10,100 Instagram followers that the hate she received—skeptics ridiculing her every move, making memes about her, brigading her Instagram comments, contacting her doctors, messaging her family, calling 911 on her—had ruined her mental health. She plans to delete her account soon.
“Thank you to everyone who’s been on my side and been my friend. I hope someday I can return, as of now it doesn’t look like I can stay in this community,” she wrote. “It’s been a good run!”
She may not have truly cured herself of Instagram, though. When one fan asked if they could continue following her somewhere new, she said, “Yes I have a private Instagram.”
The Reddit forum’s description says its goal is to “address the fact that people who feign, exaggerate or even induce medical symptoms, conditions and complications do exist and, directly or indirectly, they are hurting the chronic illness community at large.”
In essence, they see themselves as digital police officers, on the lookout for examples of what University of Alabama clinical psychiatry professor Dr. Marc Feldman calls “
Munchausen by internet.” The forum cites Feldman’s research as inspiration.
“The internet offers ‘virtual support groups’ through formats such as chat rooms and newsgroups,” Feldman wrote in a
2000 paper, long before “influencer” was an actual job description.
“However, individuals may misuse these internet groups at times, offering false stories of personal illness or crisis for reasons such as garnering attention, mobilizing sympathy, acting out anger, or controlling others.”
Feldman told The Daily Beast that faking an illness can provide the approval and encouragement some people crave but don’t get from friends and family—and it can also create an identity for those who lack a clear sense of self.
“Claiming to be a patient, and a terribly complex and sickly one at that, instantly gives a definition: ‘That’s what I am. I’m a chronically ill patient with a legion of followers,’” he said.
Feldman has a medical degree and a long history of studying factitious disorders. The credentials and motives of the Redditors on r/IllnessFakers are far murkier. The moderators declined to be interviewed on the record.
The first IllnessFakers’
post appeared in February 2018 after the internet gossip forum Lolcow (named for the internet slang term for a fun target of ridicule) discontinued “Munchie” threads that discussed alleged cases of Munchausen Syndrome.
The first poster said that he himself was a patient: “I'll need one or two other moderators because ironically I’m too ill to keep up with this myself should it take off.” He ended with a first commandment: “Play nicely.”
He later deleted his account, but the forum did, in fact, take off. These days, its members spend countless hours scrutinizing “spoonie” posts and crafting highly detailed briefs on why they think one or another is fabricating, exaggerating, or imagining a sickness.
One influencer’s recent
grid of her most popular posts, all showing her in the hospital or wearing a breathing mask, drew particular scorn: “Last years top 9—notice a pattern? No wonder some of them keep this up,” one Redditor wrote. Another commented, “You know I’ve never ever seen [her] post a picture of herself with stretchy skin. That would prove without a doubt that she has EDS.”
The forum erupted in April after the death of Jacqueline Beckwith, a 23-year-old from Florida who was known to her 140,000 YouTube subscribers as Chronically Jaquie. Beckwith, who claimed to have a super-rare mitochondrial mutation that caused more than half a dozen illnesses, was a favorite subject on IllnessFakers. After she died, the Reddit
responses were simultaneously mournful and scornful.
“It's surreal, after following [Beckwith] for years knowing she was OTT [over-the-top] and faking, seeing all of it. I’m so sad she passed, especially as it was so unnecessary,” one post read.
Members found renewed purpose in her death. One said, “I’m absolutely devastated by this. This is the danger. A girl has died in her pursuit of illness. This is what this sub[reddit] is about.” Moderators were forced to
ask members to stop posting videos from her funeral.
One member
wrote that Beckwith’s videos had helped him reach a successful diagnosis, but he still accused the YouTuber of exaggerating the severity of her postural orthostatic tachycardia syndrome (POTS), a blood-pressure disease which causes extreme lightheadedness when sitting or standing up, and her Ehlers-Danlos Syndrome.
“She is the reason I was diagnosed with several of my illnesses and I’m grateful for that, but I’m also not going to ignore that she chose the most invasive/complicated/dangerous treatment for each of her illnesses,” the post read.
Other forums that are obsessed with illness influencers also analyzed Beckwith’s death like it was a cold case to solve.
Members of the longstanding internet drama discussion site Kiwi Farms even speculated she’d faked her death.
The Redditors and fellow skeptics point fingers with an air of authority. But how can they diagnose fakery purely by examining someone’s social media posts?
Feldman, the psychiatrist, thinks it’s possible. His paper describing online medical catfishing details 10 warning signs of fraud, including a cycle of near-fatal flares and seemingly miraculous recoveries, a disregard for the seriousness of those crises, dummy social media accounts, posts that are too long for someone in the throes of severe illness, and resistance to phone or in-person contact. He said online fraudsters will often accuse their own support groups of providing inadequate support, whipping up more drama.
“Deception is so easy now compared to before social media,” he said. “People had to study up in university textbooks, go to the library, and fake dramatic symptoms like seizures and coughing up blood in person to convince physicians,” he said.
“Now you can just stay in your pajamas and check Wikipedia for even an esoteric medical ailment and go to any of the thousands of support groups out there. If your initial deception isn’t successful, you go elsewhere on the internet.”
At least one person has
reported IllnessFakers to Reddit for harassment, but it remains active. Moderators have written into the forum’s rules that they condemn harassment and prohibit posting a target’s personal information, like a home address or a phone number. The forum only allows discussion by pre-approved members, though how someone qualifies is unclear.
“We are NOT here to simply bash spoonies,” moderators wrote. “We are here to call out those who are either overtly faking outright, or exaggerating their problems in such an over-the-top and extreme way that it makes the whole community look bad and silences the voices of those who don’t have the most followers or feel they cannot speak because they don't have a port or wheelchair or whatever.”
The doubters infuriate advocates for the chronically ill, who say they already struggle to convince their doctors that their symptoms are real. Prescod thinks they are motivated by self-hatred.
“Most of the people who are on [r/IllnessFakers] are people who are sick,” she said. “They’ll say, ‘I have this, and this other person on Instagram definitely doesn’t.’ I think it’s sad. I assumed at first it was people who were well. Everyone presents differently.”
Nevertheless, she and other high-profile spoonies live in dread of being called out on the forum. “I tend to get scared that I’ll be on there one day,” Prescod admitted.
Shore said she actually crafts her Instagram posts with the forum in mind, making sure there’s no room to question whether she’s truly unwell.
“I share just enough to 'prove’ that this stuff is legitimate. Sharing videos and sharing photos of things as they happen can be helpful. I don’t share my doctors’ names or medication names,” she said. “What’s complicated about chronic illness is that you can be sick one day and be fine in the next couple days.”
In the war between the spoonies and the skeptics, the influencers seem to be winning so far, buoyed by their growing numbers and greater social acceptance of illness—possibly fueled by celebrities talking about their own health struggles with Lyme disease, endometriosis, and autoimmune diseases.
Even corporations are getting in on the action. Nitika Chopra (@nitikachopra, 41,800 followers) has worked with Tide and Dove on sponsored Instagram posts this year. CVS advertised a
giveaway on another influencer’s page in August, as did a
trendy breathing mask. Some influencers told The Daily Beast they’ll promote the Mighty Pack, a backpack for feeding tubes and other medical equipment, pro bono or in exchange for a pack.
In 2018, Chopra founded Chronicon, a convention for people with chronic illnesses; $150 tickets for the first one, in late October in New York City, sold out three weeks in advance, she said. Panel discussions included topics like “Am I Sick Enough?” and “Chronically Capable of Love” and “The Business of Being You,” which instructed listeners on how to build a following by sharing stories of your chronic illness and monetizing that audience.
“I felt like I was the only person who had psoriasis or psoriatic arthritis, which isn’t true, but every time I met someone else who had it, they felt the same way. Why is that the case?” she told The Daily Beast.
Chopra, a beauty blogger and former talk show host, geared the event towards a younger, Instagram-savvy crowd. The event’s
website was awash in millennial pink, as were the name cards emblazoned with the slogan “Breaking the cycle of isolation.” Attendees could partake in hair health consultations and load up their plates under a banner reading “Fight the good fight with good food.”
Speakers’ titles ranged from “board certified OBGYN” to “wellpreneur + teacher.” Former What Not To Wear host Stacy London gave the keynote, calling the event “the community I’ve always hoped for.” A “Chronically Conscious Celebration”—also known as a party—followed. The media company Healthline sponsored the event, and Chopra said Chronicon turned talking about her health into a full-time job.
Ardra Shephard, a blogger and Instagrammer (@MS_trippingonair, 7,000 followers) who writes about her battle with multiple sclerosis, has inked a deal for a show based on her material with the Canadian production studio Shaftesbury, she told The Daily Beast. Since she went public four years ago, blogging and social media have become her livelihood, she said. WebMD made a short film about her, “
Tripping On Air: My Trip Through Life With MS”. She also sells merchandise, though she said revenue from it was minimal.
Shephard believes the movement will only grow.
“We don’t see those stories of young people with chronic illness in media,” she said. “We still leave out disability in inclusion. It’s the next big social justice movement.”
“It’s the next big social justice movement.”
— Ardra Shephard
Peer-reviewed studies have
shown that support groups help chronic illness patients rely less on their doctors and increase their activity levels, and researchers at the National Institute of Health
observed that some doctors found social media an effective tool for working with chronic patients on self-management of their own illnesses.
But there’s no guarantee that connecting with fellow sufferers will be good for someone.
The Mayo Clinic
warns that patients gathering in support groups may exacerbate each other’s symptoms if they fall prey to “conversations dominated by griping,” “inappropriate or unsound medical advice,” or “competitive comparisons of whose condition or experience is worse.” The online analogue poses similar risks. Writers have
described how joining Facebook groups dedicated to chronic illnesses
held their focus hostage to the worst possible outcomes that others had suffered.
The American Chronic Pain Association (ACPA) runs support groups across the country. There’s no online component to them at all, said founder and CEO Penney Cowan. “You don’t have the same amount of control in an online group as you do in person,” she told The Daily Beast.
Cowan said talking about physical symptoms during ACPA support group sessions is prohibited in order to redirect participants’ attention to the things they can control and empower them.
Dr. David Stukus, a pediatric allergist with Nationwide Children’s Hospital in Columbus, Ohio, has seen his patients benefit from online communities.
“If you can find others out there that know what it’s like to go through what you’re going through, that’s extremely powerful, and there is a lot of benefit in the emotional support patients get and in tips for daily living that they’re not going to get from your doctor,” he said.
“That said, nobody should be giving out individual specific medical advice online, period,” he cautioned. “Whether you're a qualified doctor, patient, or anybody else, there are too many important nuances that can influence somebody’s care management that you can’t get from a direct message or a Facebook group.”
Stukus—who corrects false and exaggerated health claims through his Twitter and Instagram accounts—agrees that influencers can hold outsize sway over struggling followers.
“It’s a lot easier to trust somebody who tells an emotional story as opposed to somebody who’s spouting science in a professional way that maybe doesn’t relate to people,” Stukus said. “But somebody’s personal anecdote is really just their own story, and it may have no bearing whatsoever on anybody else in this world.”
Feldman thinks the potential for misinformation is great. That’s why, even though he has never even visited Reddit, he believes a forum like IllnessFakers is a net benefit to society.
“The stuff in real life, the doxxing—that I would have much more trouble with,” he said. “You want to confront the behavior, you don’t want to destroy a person’s life or stalk them. If you do, you want to ask yourself why this has become such a powerful mission.”
But, he added, “it seems like the number of vague ailments that people are reporting is increasing so massively that it’s actually a public service to nip these in the bud.
“Some make no medical sense—after decades of medical intervention, they never get better, and a cause is never found. Yet despite chronic fatigue syndrome, people still manage to fly across the world and give talks and write books. They seem to have enviable energy.”
That kind of comment angers the influencers, who say they are constantly grappling with the tension between appearance and reality. Are they obligated to perform their illnesses? Does looking beautiful in a selfie mean you’re not sick?
“I parked in a handicapped spot two weeks after one of my major spine surgeries, and a woman and her husband yelled at me that I should be ashamed of myself,” Shore said.
“Part of what people like about these Instagram accounts is that they can see someone on a train sitting in handicapped spot, and previously they would have said, ‘Oh, they’re young. They don’t deserve to sit there,’” she added.
“But the more they see of us, the more they understand you can look totally OK on the outside and still have health issues that are very limiting.”
I have a few different recent things I need to post about, but bear with me because I’ve never actually been a part of a forum before so idfk how any of this works 
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