Jesse explained in his essay how it felt to see their stories so misrepresented by “Afflicted”: After my first viewing of ‘Afflicted,’ I was excited that the series was out, and I still held onto the notion that it would create a dialogue around invisible illnesses. So stayed tuned! Then, so the cameras could film the minor surgical procedure, I asked my nurse to come out and insert a second midline. If you watch the entire series you’ll notice several people, mostly doctors and the subjects’ family members, also use “hypochondria” in their interviews. That’s why, perhaps out of sheer instinct, I worked extremely hard to make sure my story was told in the best possible light. It’s unfair to categorize people like this because they “become” their illness. Mine is not a simple illness. This is Nick here, Bekah's brother. “I had no idea that the ‘documentary’ would be a reality show that asks the question Is this real? It’s a medical mystery show and a medical procedure isn’t important enough to make the final cut? Netflix released the documentary series Afflicted on August 10 th of this year. Researchers from Stanford who came to draw my blood for a major ME study, My mom at her job during day and caring for me at night, Interview with Stanford Geneticist Dr. Ron Davis, Interviews with several top researchers at the 2017 Community Symposium on the Molecular Basis of ME/CFS. Many of the cast members are upset with the lack of data, research and interviews with experts on their conditions. But it’s not just viewers who have taken issue with certain elements of the series. When I asked one of them about this, he sent me this note: What exactly is going to be effective? Even our own skepticism about some of the alternative treatments we pursued (sometimes with the help or at the suggestion of the production company) was carefully edited out, all to craft the most sensationalist narrative possible. Post was not sent - check your email addresses! This guy was odd, to say the least. Some of the people in the film were hurt. There’s one sound bite from a doctor who says that studies have shown that trauma can damage the immune system, that’s absolutely true. Sorry, your blog cannot share posts by email. Now, after watching the finished product, I feel it very easily could have gone the other way. The pathology is not at all related. And now that’s what I intend to do. 1. They didn't mention we all underwent psych evals before being allowed to participate. You'll find original drama Malcom & Marie, as well as the final chapter of original series To All The Boys. If Netflix wanted “drama” and that’s all this was about, they could have had plenty of that by going after the incompetent doctors who kept these people sick for years by not addressing the real problem and forcing them to seek alternatives. Netflix is being sued for defamation, fraud and invasion of privacy by subjects of its 2018 unscripted series Afflicted about people with chronic illnesses. that there is much more to the story. The producers “would insert words into their questions that none of us would normally use and force us to incorporate them in our answers,” he wrote, adding: There is one scene in the first episode of the series where my mom says: ‘At first you’d always be questioning … the whole hypochondria … is there some psychological reason?’ In that part of the film her voice is dubbed over shots of me bathing, and it appears as though she’s saying there was a time when my loved ones thought I was a hypochondriac, but I know for a fact that’s not what she meant. But the worst part was the producers said they’d pay for the procedure and didn’t. Now that Afflicted has come out, it’s apparent that he wasn’t entirely joking. ‘Reign’ Cast: Where Are They Now 3 Years After Finale? A fair question. Like the classic sitcom Friends, Netflix’s new series Afflicted focuses on the lives of a group of attractive, well-off white people. I knew it was controversial but I felt that even if there was a 1% chance that it might work it would be worth trying. I soon learned that this producer had been on a popular reality TV show at one point, but I didn’t think much of that — he said I would be in a documentary, not a reality TV show. I passed with flying colors. Man, if only you knew how we as subjects were misled … now that is unjust. I lived like this for 2 years before finding neural retraining and retraining my brain not to go into fight or flight. 2021 Mighty Proud Media, Inc. All Rights Reserved. The video made it seem like the crew was at my house filming during the snow and winter, or at least that the video was taken during the time they were documenting my life. Baffling symptoms. Many people with illnesses that are not in the film feel it discredits there illness. They did not work. I also didn’t want to diminish the work of some truly talented and genuine people who worked on the series and just happened to land a bad gig. His “joke” immediately popped back into my mind as I watched the so-called “experts” he interviewed on the show and how they rattled off nonsensical psychobabble about physical illnesses — essentially denying that some of the illnesses portrayed on the show are physical, instead insisting they originate in the mind. The “Afflicted” cast members said the editing of the series warped their stories to such an extent that they are no longer true. The first red flag, which I should have seen but didn’t, was when one of the producers had me remove my midline IV — a foot long vein-dwelling catheter in my arm. In the spring of 2017 I was contacted by a casting producer for DocShop Productions, the production company working on Afflicted. It appears you entered an invalid email. In her opinion, producers of “Afflicted,” which premiered in August, not only misrepresented the extent of her health conditions on screen, but they pushed a singular narrative that’s long haunted individuals with a variety of persistent, multi-symptomatic, tough-to-diagnose illnesses: Her sickness is all in her head. I binge-watched this docu-series in one sitting. Now that Afflicted has come out, it’s apparent that he wasn’t entirely joking. Nonetheless here we are, once again fighting to legitimize our illnesses, this time after participating in a film that many of us assumed would help accomplish that very thing. My mom can’t remember the question the producers asked in order to create that sound bite, but she probably wasn’t even talking about me, she was using the second-person, likely to describe a general scenario that other, less supported ME/CFS patients in similar situations endure. Nevertheless, I am still proud of my part in the series. — Jake Sidwell (@jakesidwell) August 16, 2018. The producer said, “mental illness.” Though it’s certainly an important topic, I do not have a mental illness nor did the producers tell me that the series was about anything mental health related. After all, the casting producer knew how sick I was, he knew it was painful for me to talk and to look at a screen, but he seemed to have no problem putting me through the physical torture. Trust me, there is nothing I won’t try if there’s even a remote chance that it could make me better. The Mighty has reached out to DocShop Productions and Netflix for comment, and has yet to hear back. “If making a film with a ‘compassionate’ look at the lives of chronically ill people and the complexities of their illnesses was the filmmakers objective, as they said it was, then they failed miserably.”, In their joint Medium essay, the group wrote that the portrayal of their illnesses as psychiatric in nature is “the most serious and central flaw” of “Afflicted.”, Several discussed having to “pass” a psychiatric evaluation before being accepted onto the show in addition to presenting medical evidence of their conditions – so directors and producers knew they were working with people who had legitimate physical afflictions. There’s a big difference between acknowledging the skeptical perspective and, say, devoting three entire hour-long episodes to psychobabble sound bites about it, which is precisely what the producers did. Perhaps I was the most debilitated participant and because I usually couldn’t speak loud enough for the microphones to pick up my voice, the producers decided to take it easy on me. Either way, they asked me to do a completely unnecessary medical procedure for the cameras and it never made it into the film. But this is the type of focus that is employed on Intervention, the reality show in which people are confronted about their addictions on camera, which at one time was made by the same producers who made Afflicted. However, she said, “In my 27 year documentary filmmaking career, on every show that I worked on about real people and real situations, extreme care was always taken to make sure we were not altering basic facts.”, The same cannot be said about “Afflicted.”. I don’t think they’re bad people, or even necessarily had cruel intentions, but I hope that this is a learning experience for them — you can’t play both sides. — Jesse Bercowetz (@bercowetz) August 15, 2018. That would have been good drama. The cast members say they agreed to participate, unpaid, because they hoped the show would bring awareness to their conditions and help others who live with similar chronic illnesses. Perhaps I should just be happy that my story was told at all and that it’s raising awareness, albeit the wrong kind, but that’s nowhere near good, or even acceptable, enough for me. The second red flag came when the film crew was filming my mom at a local restaurant and a stranger asked a producer what the series was about. Chapter 1: Toxic World 46m. I wouldn’t even necessarily call them symptoms of it. I’ll have some big announcements in the weeks and months leading up to the release of the book. “It was not going to be a reality show — rather, it would use footage from our story to help experts and scientists explain chronic illnesses like mold toxicity and chemical sensitivity that my partner Jill suffers from.” Th… They insisted he travel to examine a patient in a state where he holds neither a medical license nor malpractice insurance. Disbelief About The ‘Afflicted’. So not only did I do the psych evaluation, but after that ordeal was over I had to have my online presence analyzed by a private investigation firm. Even still, most of the other participants were not so lucky and the producers capitalized on their vulnerabilities. It’s a human safari and whether or not they are physically ill or mentally ill, I’m not so sure the series was created with the best interest of the people in mind. The Mighty reached out to Jose Montoya, an infectious disease doctor who runs the Stanford ME/CFS Initiative and was thought to be interviewed for the series. If making a film with a “compassionate” look at the lives of chronically ill people and the complexities of their illnesses was the filmmakers objective, as they said it was, then they failed miserably. It was around this time that I learned that I would not be paid for my time and effort on Afflicted. At one point in the series the producers include an iPhone video I took the winter before they showed up to film. Are you in pain?” to which I nodded my head, and then unsympathetically, he continued asking me questions. Despite having evidence to the contrary, the makers of “Afflicted” called the validity of the cast’s illnesses into question throughout the series, resulting in the “Afflicted Seven,” along with their family, friends and others in the chronic illness community, calling out the production for being “unethical.”. "The majority of those featured in the series have Lyme disease.
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