The Cast of 'Afflicted' Speaks Out Against the Show's 'Unethical' Handling of Their Stories
Since premiering on August 10, Netflix’s docuseries “Afflicted” has been the subject of much debate and controversy in the chronic illness community. But it’s not just viewers who have taken issue with certain elements of the series. Several people featured on the show have spoken out about the problematic way the show handled their stories, and expressed their dissatisfaction with the overall message “Afflicted” conveys.
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.
Man, if only you knew how we as subjects were misled … now that is unjust.
— Jamison Hill (@NotTheWhiskey) August 13, 2018
i regret unleashing my frustration on you. the series has distorted my story, crafted a narrative full of factual errors, and painted an unflattering picture. i had hoped for better. had i not funded the work on the house my partner would have had to sell it.
— jill maxi edelstein lcsw (@attunedtherapy) August 14, 2018
Unfortunately, you're being lead to misinformation because of the documentary. It's not your fault. They didn't mention we all underwent psych evals before being allowed to participate. Also, the psychiatrist I saw when I first became ill gave me a clean bill of mental health.
— Jake Sidwell (@jakesidwell) August 16, 2018
Jake I am with you! They did not tell my story either! I have been bullied and harrased since #Afflicted came out! They corrupted our stories!
— Pilar Olave (@PilyOlave) August 16, 2018
Hi, Terrible Cupcake. This is Nick here, Bekah's brother. You raise a very good question here: "why aren't they showing it and why aren't they talking about it". Believe me, we did talk about it. They didn't show it.
— Nick Dinnerstein (@ComposerFocusMA) August 14, 2018
Some of the people in the film were hurt. Misled, misrepresented, the editing was unethical… the list goes on. Many people with illnesses that are not in the film feel it discredits there illness. They are in full support of the subjects but angry at the fillm makers.
— Jesse Bercowetz (@bercowetz) August 15, 2018
Jake Sidwell, one of the seven people featured, also shared an hour-long YouTube video on Thursday in which he explains what the documentary process was like, how “Afflicted” misrepresented those with chronic illness as well as the “medical proof” the docuseries left out.
On Sunday, a Medium article titled “The Truth Behind Netflix’s ‘Afflicted‘” was published by several of the cast members, including Jamison, Bekah (as well as her brother, Nick, and partner, Jesse), Jake, Pilar (her story is “coming soon”) and Jill (as well as her partner, Janine). 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.
These are the cast’s primary allegations against “Afflicted”:
1. They were misled regarding the content and intentions of the show.
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. “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.”
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. Instead, it cast doubt on the validity of their conditions.
“I had no idea that the ‘documentary’ would be a reality show that asks the question Is this real? Are they crazy? Had I known, I would never have signed up. I am heartbroken and furious,” Jill wrote in her essay.
“In many ways, [‘Afflicted’] has added more skepticism to the conversation,” Jamison added. “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.”
2. Their physical illnesses were falsely portrayed as psychiatric or psychosomatic.
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. However, the show continuously asks the question of whether the subjects are truly sick, or if it’s “all in their heads.”
In his Medium essay, Jake wrote:
‘Are these people really sick?’ is the undercurrent narrative of the entire series, with full episodes even being named after that premise. A fair question. 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.
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?’
Actually, ‘Afflicted’ didn’t really pose it as a question. 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.
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.”
3. The show excluded critical information about the cast’s medical history as well as interviews with relevant medical specialists.
While some of their health issues are discussed in the series, the cast has revealed in their follow-up tweets, videos, essays, etc. that there is much more to the story. Their collective essay stated:
Many of our concrete diagnoses and test results are excluded from the series. Our conventional medical doctors were not consulted during filming. 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.
For instance, “Afflicted” reveals that Jake and his doctors believe he has chronic Lyme disease, and are working to treat that. What the series doesn’t reveal, and what Jake explained in his essay, is that he also experiences a wide range of other symptoms, including chronic low white blood cell count, low red blood cell count, positive Epstein-Barr virus, tachycardia, tinnitus and Bell’s palsy, for which he sees a hematologist/oncologist, infectious disease doctor, neurologist, cardiologist, primary care doctor, psychologist, alternative medicine practitioners and so on.
Instead of showing that evidence, they used precious time in the series to espouse dozens of out-of-context quotes from unrelated medical ‘experts’ who had never spoken to us, met us, or evaluated us in an way — used as an underhanded tactic to present an armchair diagnosis of mental illness.
Many of the cast members are upset with the lack of data, research and interviews with experts on their conditions. 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.
In his essay, Jamison also provided a list of things he said were filmed (information about his personal health as well as his conditions) but were omitted from “Afflicted.”
I want to specifically mention the lack of ME/CFS researchers featured in the series, as well as limited references to my medical records. 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. 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. But none of that was mentioned, nor was my diagnosis and treatment of Lyme disease and the MTHFR gene mutation. All of this information was provided to DocShop Productions.
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. Montoya told us that although he was contacted by the “Afflicted” crew, he does not recall being interviewed. He said the crew was finishing up production and did not have time for him. They insisted he travel to examine a patient in a state where he holds neither a medical license nor malpractice insurance. For that reason, he declined.
4. During the editing process, their stories were severely distorted and pieced together to create a false narrative.
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. 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.”
‘Afflicted’ took our story and made a work of fiction. 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. It really is completely shocking.
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.
Jill and Janine, for example, have taken issue with the emphasis the series places on their financial issues, and the incorrect information “Afflicted” has suggested about their financial status. 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. The show suggests they need $90,000 for their house by winter and that Dr. Nagy is selling Jill on a $30,000 treatment plan — neither of which, Jill says, is true.
Many also claim their loved ones were asked pointed, leading questions (largely surrounding the notion of doubting their illnesses), and their responses were edited and framed to suggest they were skeptical, even when they weren’t.
According to Jamison, when he and his mom were interviewed, their answers were manipulated. 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.
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. That lasted about a day as it sank in the degree to which they had hacked apart our scenes and pieced them back together to fit their narrative. Bekah and I were totally devastated; we felt betrayed and defeated, misled, lied to, manipulated, and completely misrepresented. The editing was straight-up unethical and damaging, not to mention exhibiting downright ignorance of the illnesses.
The Mighty has reached out to DocShop Productions and Netflix for comment, and has yet to hear back.
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. The #MEAction Network has also posted several calls to action on its Facebook page.
“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.