First, in order to even get in the documentary, I had to do two rounds of interviews via Skype. A fair question. Two subjects in particular seem like total BS to me. Though I had high hopes for the series, and some parts were accurate, it has ultimately caused damage to the chronic illness community, portraying many of the participants as hypochondriacs and the illnesses they face as psychosomatic rather than their true physical nature. Plus, there was something about having my story seen on Netflix that I felt would make its complicated nature easier for people to understand. That’s why, perhaps out of sheer instinct, I worked extremely hard to make sure my story was told in the best possible light. I did not enjoy having this guy in my space; he started walking in on me with a camera while I was using the “bathroom,” a very private part of my daily routine that I explicitly told the crew they could not film. Mental illness is serious and devastating, and were that an explanation for our symptoms, we would gladly pursue treatment. Had I known, I would never have signed up. New Movies on Netflix . Now, after watching the finished product, I feel it very easily could have gone the other way. 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. Some of the cast members (including those with illnesses as well as their partners, family members and friends) took to Twitter in the days following the series’ release to share their initial reactions. There were some truly memorable moments to my story, glimpses into my life that I’m so grateful to have documented and to be able to revisit in the future. I have been bullied and harrased since #Afflicted came out! Rather than ask the question: ‘How can we help these canaries in the coal mine?’, ‘Afflicted’ asked over and over and over again, ‘Are these canaries crazy?’. Post was not sent - check your email addresses! 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. Here are … At one point he even asked “Does it hurt to talk this much? Many of the cast members are upset with the lack of data, research and interviews with experts on their conditions. And if they still chose to examine it, our well-documented good mental health should have been included in the narrative. You can’t correlate the same issues that people face with addiction to illnesses like Lyme disease and ME/CFS. The most frustrating part about the series’ focus on mental health is that it was never even mentioned that I’ve tried therapy and antidepressant medications. So I started watching “Afflicted” on Netflix, which is about people with unusual diseases with a slew of symptoms that make it nearly impossible for doctors to agree on a diagnosis. Either way, they asked me to do a completely unnecessary medical procedure for the cameras and it never made it into the film. The truth is the film crew spent an entire day at the 2017 Community Symposium on the Molecular Basis of ME/CFS, which was held at Stanford University, where the crew interviewed numerous ME/CFS researchers who I know had a better explanation of the disease than: ‘We don’t know what it is,’ which is a sound bite featured frequently throughout the series. In the days following the show’s release I’ve wondered why my story turned out relatively well when others did not. These researchers probably mentioned how it’s a metabolic and inflammatory disease, how it often creates low natural killer cell function and other biological deficiencies. The “Afflicted” cast members said the editing of the series warped their stories to such an extent that they are no longer true. I consider mental health a very important issue, but Afflicted should never have been about that. ‘Are these people really sick?’ is the undercurrent narrative of the entire series, with full episodes even being named after that premise. Nonetheless, through a combination of deceptive questioning and clever editing techniques, the producers created a false reality for her and me in that scene. 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. They would insert words into their questions that none of us would normally use and force us to incorporate them in our answers. For ethical and journalistic reasons, documentary subjects are never paid. But here’s the thing, nobody who has watched Afflicted knows any of this because the producers left it all out. It’s unfair to categorize people like this because they “become” their illness. Chapter 1: Toxic World 46m. that there is much more to the story. 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. I’m not victimizing myself, or anyone else, but I am incredibly disappointed with the scope and slant of the overall series. I hate that when people see how defensive I get about my illness being called psychosomatic they automatically assume it’s because I’m in denial and refuse to try therapy or SSRIs. At one point in the series the producers include an iPhone video I took the winter before they showed up to film. 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. Some of the people in the film were hurt. Also, the psychiatrist I saw when I first became ill gave me a clean bill of mental health. — Jesse Bercowetz (@bercowetz) August 15, 2018. Controversial diagnoses. I originally thought “Afflicted” was going to shed light on less-known illnesses and elevate the stories and voices of those who struggle with them, but the docuseries did the opposite. The cast members allege that the editing, whether by the omission of facts or the piecing together of different scenes, caused their stories to become untrue, and implied false things about their character as well as the character of friends and family. Videos Afflicted. The year and a half prior to that I had been too sick to chew food and had to survive on IV fluids and liquefied meals. The producers had us begin our responses by repeating the question they asked, which is fairly typical for an on-camera interview, but for these producers it was a way of putting words in our mouths. Release year: 2018. Before I convinced Dr. Gordon to come see me, that same producer got frustrated and wanted me to travel four hours to the Bay Area to see an ME specialist even though I was physically unable. When I asked one of them about this, he sent me this note: What exactly is going to be effective? Instead, in many ways, it has added more skepticism to the conversation. He kept referring to my mom as “Mommy” when talking to me. Even still, most of the other participants were not so lucky and the producers capitalized on their vulnerabilities. Instead, it cast doubt on the validity of their conditions. But with help of my mom and a local doctor, we figured it out. Netflix released the documentary series Afflicted on August 10 th of this year. Actually, ‘Afflicted’ didn’t really pose it as a question. I want to specifically mention the lack of ME/CFS researchers featured in the series, as well as limited references to my medical records. It out and out said they were crazy despite all of the information and diagnostic testing provided by the Afflicted Seven which said the opposite and which was omitted. Our conventional medical doctors were not consulted during filming. And now that’s what I intend to do. The subjects of the new Netflix documentary series Afflicted claim they had to prove their clinical diagnoses of chronic illness and were mental fitness before filming, but aren't portrayed that way. But he had to leave after a few days and another cinematographer replaced him. "The majority of those featured in the series have Lyme disease. According to Jamison, when he and his mom were interviewed, their answers were manipulated. The editing done on Afflicted crosses that boundary in my opinion. If you blurred our faces, altered our voices and took out our names, I would not recognize our lives as there were such gross inaccuracies, fabrications, and omissions. In fact, I still regularly take Ativan because it does help. 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. Thanks for reading! I think stress and trauma and other mental health factors can contribute to physical illnesses, but they cannot cause them. 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. In their essays, they explained the truth about their health and medical history and offered evidence they say “Afflicted” left out in order to make their illnesses look questionable. They included the video of the snow falling outside my window to show time passing. Disbelief About The ‘Afflicted’. When I was approached about being in Afflicted, I had already written several essays about my fight for survival, but having it told visually was appealing to me. It appears you entered an invalid email. In one scene he is heard saying: “This is an incredibly well adjusted young man. “Listen, any time you’re bringing cameras in the real world and aiming at disempowered people, exploitation is gonna come up.”, – Dan Partland, executive producer, Afflicted and Intervention. Sorry, your blog cannot share posts by email. Since premiering on August 10, Netflix’s docuseries “Afflicted” has been the subject of much debate and controversy in the chronic illness community. Neural retraining and ptsd therapy has allowed me to live in a more normal environment. Like the classic sitcom Friends, Netflix’s new series Afflicted focuses on the lives of a group of attractive, well-off white people. The truth is the film crew spent an entire day at the 2017 Community Symposium on the Molecular Basis of ME/CFS, which was held at Stanford University, where the crew interviewed numerous ME/CFS researchers who I know had a better explanation of the disease than: “We don’t know what it is,” which is a sound bite featured frequently throughout the series. Apparently, more than a week after it came out, some of them still haven’t seen the series. 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. One such episode was devoted to “Identity,” suggesting that those of us with chronic illnesses spend so much time in poor health we become consumed by the lifestyle and don’t know how to live any other way, which is a completely asinine point to make. If he can’t do something it’s because he can’t do it.” Now, does that sound like a quote from someone who has ever thought her son was a hypochondriac? Season 1. Ideally, psychiatrists like Dr. Richard Friedman should never have been interviewed. The Mighty has reached out to DocShop Productions and Netflix for comment, and has yet to hear back. I lived in my house with no breakers on, made people change into scent free clothing before they visited me, no cell phone, no WiFi. 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. However, they feel the docuseries did not accomplish this goal. 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. And then of course there’s the physical injuries, which may have damaged my nervous system. The car accident I was in didn’t cause ME/CFS or Lyme, but sure, the emotional trauma and stress may have weakened my immune system to the point that viruses took over my body. 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. “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… I wouldn’t even necessarily call them symptoms of it. So stayed tuned! If you’ve already ordered it or plan to, the book will be published January 2021 and all copies will be delivered then. I confronted the producer and he said he was joking, that it’s just something he says to scare people off when filming in public places (that alone is a red flag). The problem is: that didn’t actually happen. By some accounts there were no screen tests done prior to the series’ release and it wasn’t until a few weeks ago that I even learned of the date it was coming out. They didn't show it. The people living with illnesses who were profiled on the show. Some say it’s just a matter of they wanted good TV. 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. If giving all of your surplus energy to try to make yourself better is “becoming” an illness, then sure we “become” it, but if we’re talking about finding some sort of clandestine enjoyment or comfort in living as a sick person because we don’t know how to live any other way, well, that’s one of the most idiotic things I’ve ever heard; that’s not us. Many years ago, when a friend with ME told me that they had been rediagnosed with Lyme and and that they were emabarking on an expressive treatment programme, it was only because the medics in my family advised me otherwise that I did not go to see the same doctor. On August 10th Netflix released Afflicted, a seven-episode series in which I appear with six other chronically ill patients. However, the show continuously asks the question of whether the subjects are truly sick, or if it’s “all in their heads.”. Hi, Terrible Cupcake. However, this question becomes problematic when the creative team intentionally leaves out the answers to that question — answers which were given by the participants, filmed, and then neglected. 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. When Netflix’s docu-series Afflicted premiered last month, it was billed as an empathetic look into the lives of seven people battling misunderstood chronic illnesses. – puffins&penguins&me, How Netflix’s ‘Afflicted’ Failed the Chronic Illness Community - Euro Journal, The Time I Bought a $2,000 Coffee Mug – Jamison Writes, The Art of (Not) Accepting Unsolicited Advice, Netflix and Hill: The True Story Behind “Afflicted”, PICC IV insertion procedure which I redid for the cameras, My low NK cell function, low cortisol, MTHFR gene mutation, active cytomegalovirus and EBV tests. If this doesn’t sound like a big deal, let me emphasize — at the producer’s request, my mom pulled out a foot of tiny plastic tubing from inside my arm and then, using a scalpel, my nurse made an incision in my other arm in order to insert the new tubing. Additionally, the other day my mom reminded me of how our answers were manipulated during on-camera interviews. They tell you they’re making the series to help people see you through a “compassionate” lens; but instead, they edit things out of context, and conveniently omit any & all medical & scientific facts surrounding these conditions. I’d get destroyed by the literary world, I’d probably never again be taken seriously in my writing. — Jake Sidwell (@jakesidwell) August 16, 2018. We exchanged the following text messages: I thought she was joking, and she probably was at the time, but shortly thereafter that same producer contacted my mom and actually suggested that she give me a tranquilizer and transport me to a doctor. — jill maxi edelstein lcsw (@attunedtherapy) August 14, 2018. I’ve done both of those things, many times, and yet I’m still as sick as I am. In her essay, Jill explained that even though the series implies that Janine is paying for everything, including the house and all of Jill’s medical expenses, Jill has actually covered 100 percent of her medical expenses and a large portion of the remediation. People with mental health conditions deserve empathy and care and the treatment they need, just like those of us with chronic physical illnesses deserve those things. The producer told me that if I made it on the series I, along with several other people, would be filmed living with a chronic illness and through a “compassionate lens.”. I’m sad and angry because I’m proud of my part in the series, but I can’t, or rather won’t, recommend it to anyone because I’m afraid people will doubt the legitimacy of my illness, or any other that deserves to be taken seriously. That is essentially what the producers tried to do with Afflicted, except it didn’t work. Baffling symptoms. Join kitty enthusiast Gabby and her sidekick Pandy Paws as they team up for a series of animated adventures. More alarming however, was how the editors of the film cut the audio and video to make comments from “experts” pertain to the illnesses on the show, which they may not have even been referring to. 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. Not when I see other sick people suffering at the hands of a film that was supposed to do right by us. 2. Misled, misrepresented, the editing was unethical… the list goes on. The #MEAction Network has also posted several calls to action on its Facebook page. 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. For starters, later in the episode she says: “Jamison’s a fighter. They insisted he travel to examine a patient in a state where he holds neither a medical license nor malpractice insurance. Now that Afflicted has come out, it’s apparent that he wasn’t entirely joking. You can’t make a reality show that is also an investigative documentary; you can’t say a physical illness is psychosomatic and expect the people with that illness to support your film; you can’t dupe a person’s family into saying he’s a hypochondriac and expect him to just be happy that the film is “raising awareness.” I realize that a creative work can’t be everything to everybody, but it should at least be the thing you said it would be to whom you said it. In realty they only filmed me during July, August, and September; no snow. For instance, “Afflicted” reveals that Jake and his doctors believe he has chronic Lyme disease, and are working to treat that. Eventually I got through the casting interviews and the producer, tantalized by the thought of me potentially being well enough to go outside for the first time in years, liked my story enough to interview my family. I binge-watched this docu-series in one sitting. Now that Afflicted has come out, it’s apparent that he wasn’t entirely joking. For that reason, he declined. Are you in pain?” to which I nodded my head, and then unsympathetically, he continued asking me questions. 1. You raise a very good question here: "why aren't they showing it and why aren't they talking about it". These are the cast’s primary allegations against “Afflicted”: Cast members claim they were originally told the production was going to be a documentary filmed through a “compassionate lens.”, “We were assured that this series would shine the light on misunderstood and unknown conditions and illnesses,” Janine wrote in her Medium essay. I also had to confirm every address at which I’ve ever lived. Netflix’s “Afflicted” follows a story about one patient with severe chronic mold sensitivity. I’ve tried a lot of the things people have recommended — everything from drinking celery juice while sitting in a salt bath to going to weekly therapy sessions and taking anti-anxiety medications. However, not all of the film crew was this bad — I liked the first cinematographer, he was very respectful and seemed to genuinely care about my comfort level. With Bekah, Jake, Pilar, Star. But no they went after the suffering souls. They corrupted our stories! Afflicted - (2013) - Netflix. In fact, one could argue that they gave far more air time to skepticism than the scientific research that is being done on the chronic illnesses profiled in the series. As a writer I know the power of good storytelling, but I also know the importance of telling an accurate and truthful narrative. Cast members claim they were originally told the production was going to be a documentary filmed through a “compassionate lens.” “We were assured that this series would shine the light on misunderstood and unknown conditions and illnesses,” Janine wrote in her Medium essay. I told one of the producers that because she herself had a chronic illness, she should be ashamed of how her crew misled the people in the series. Trust me, there is nothing I won’t try if there’s even a remote chance that it could make me better. Here's what's new on Netflix in February 2021, and what's leaving. “I had no idea that the ‘documentary’ would be a reality show that asks the question Is this real? However, this meant giving control of the narrative to people who, unbeknownst to me at the time, had a dishonest agenda. 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. People with mold sensitivities often experience upper respiratory problems including nasal stuffiness, wheezing, eye irritation, coughing, skin irritation, and sometimes upper respiratory infections. afflicted netflix cast where are they now For that reason, he declined.The “Afflicted” cast members said the editing of the series warped their stories to such an extent that they are no longer true.Janine, who works as a nonfiction/documentary television and film editor, explained that she’s very familiar with the editing process and the need to manipulate soundbites to create a storyline. 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. I had to accept a friend request from some random account on Facebook so private investigators could look through all my photos and posts. Many people with illnesses that are not in the film feel it discredits there illness. I can’t imagine the producers wanted to see me suffer through surgery for nothing, but maybe they did so in order to make me believe they were focusing more on the science and medical aspects of my illness when really they cared more about psychobabble. But the worst part was the producers said they’d pay for the procedure and didn’t. But none of that was mentioned, nor was my diagnosis and treatment of Lyme disease and the MTHFR gene mutation. He also had an unusual affinity for my inflatable bathtub, repeatedly telling me that he wanted to get one so he could bathe in his backyard. You'll find original drama Malcom & Marie, as well as the final chapter of original series To All The Boys. 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.”. All of this information was provided to DocShop Productions and here are the most noticeable parts left out of my story: If you’ve watched Afflicted then you know that several of the episodes focus predominantly on psychological issues, often implying that the illnesses seen in the series are created or contributed to by the mind. That was a big part of Intervention. I want to specifically mention the lack of ME/CFS researchers featured in the series, as well as limited references to my medical records. Privacy Afflicted: The Verdict. Oops! — Nick Dinnerstein (@ComposerFocusMA) August 14, 2018. Seven people suffering with bizarre chronic illnesses hunt for explanation and cures while simultaneously battling with social skepticism and abandonment. Since “Afflicted’s” premiere, both cast members and the chronic illness community have spoken out against the series and are petitioning Netflix to remove it from their platform. “We will have more to say in the coming days and weeks regarding what action we hope Netflix will take to remedy this situation, and how you can help support us,” the “Afflicted” cast said. Jake I am with you! You wouldn’t treat a cancer patient with a mental illness protocol and vice versa, so neither should you treat ME/CFS or Lyme as you would a mental illness. Post-production took almost exactly a year, during which time I heard nothing about the progress of the series. 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.”. Montoya told us that although he was contacted by the “Afflicted” crew, he does not recall being interviewed. Back With The Ex dropped on Netflix some time ago, but of recent, fans have been talking about the show (in the Love is Blind aftermath) and asking where those couples are now. “Afflicted,” a new Netflix docuseries that premiered on August 10, follows seven people who live with chronic illnesses. 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. Imagine if, in my memoir, I quoted my mom in a scene that she wasn’t actually part of or even just twisted her words around. From the producers of the Emmy-winning series "Intervention." He said the crew was finishing up production and did not have time for him. The article gives an overview of their main concerns and frustrations regarding the series, “as well as the most egregious errors, manipulations and omissions of the edit,” followed by links to each person’s story and experience with the documentary. Terms, the subject of much debate and controversy in the, documentary filmed through a “compassionate lens.”, their loved ones were asked pointed, leading questions, petitioning Netflix to remove it from their platform. 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.
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