Is It All in Your Head?

by Helen Richard

In 2018 Netflix released Afflicted, a series following “seven people suffering with bizarre chronic illnesses hunt for explanation and cures while simultaneously battling with social skepticism and abandonment.” The conditions explored on the show are often presented as a collection of symptoms the subjects experience that lack a definitive umbrella diagnosis. For instance, Jake, who is first introduced in the third episode, currently has “chronic low white blood cell count… low red blood cell count, chronically swollen lymph nodes, positive Epstein-Barr virus, tachycardia, tinnitus and depersonalization disorder.” The list of symptoms from the duration of his illness is far longer and varied. Yet because they are not neatly sorted under the heading of, say, pneumonia, Afflicted suggests that these “bizarre chronic illnesses” are merely psychosomatic or psychiatric manifestations.

In a post on Medium, a majority of the purported “documentary’s” subjects and some of their loved ones who also took part in filming address the liberties which the series took with their stories. For a show which is supposedly about demystifying diseases like extreme mold and chemical sensitivities or chronic Lyme disease, there is a shocking lack of medical explanation, despite the amount of time spent in doctors’ offices and undergoing treatment. In their exposé, the group elucidates that there was at least one instance where filmmakers had access to scientists who were knowledgeable on the matters pertaining to their diseases and rather than use that interview footage, turned to “the skeptical voices of ‘experts’ who have no relevant professional or academic expertise in [psychosomatic] diseases.” Pilar, who has extreme chemical sensitivity, Mast Cell Activation Syndrome, Common Variable Immune Deficiency, Mold Sensitivity and EMF Sensitivity, said in her account of filming that producers manipulated her relationship with her estranged husband to create more tension. She describes her first scene much differently than the way it plays out on the show. Her husband brings a case of water up to her apartment and she tells him that he needs to “change his clothes, so as to prevent [her] body from reacting later [to contaminants].” This is not something he was doing for her and only happened because the camera crew told him to do it. Not only was it a manufactured representation of Pilar’s reality, but it also posed a threat to her wellbeing. Nick Dinnerstein, brother to subject Bekah, provides a detailed account of instances where the timeline portrayed is egregiously falsified. In the first episode of the show, Bekah is driven by her boyfriend to receive Ozone Therapy. In actuality, Nick was the one who accompanied her. Afflicted is already fabricating its story on the most superficial level. How could the series possibly get the medical and scientific aspects of these conditions right when it was based on lies from the start? Similar emotional and cinematic manipulations and omissions are commonly referenced across each of the statements linked to the main post.

Another open letter on Medium, this time to Netflix executives, was written by a cadre of writers, filmmakers, physicians, scientists and others expressing their concerns about the series. They provide even more evidence of the unethical practices that took place during the making of the show. For instance, subjects felt pressured to continue their participation in the project in order to get otherwise unaffordable treatment and were encouraged to take unnecessary risks by changing their health care regimens. They cite research from sources including the New England Journal of Medicine which evidences both the validity and gravity of the subjects’ conditions. Effectively, Afflicted’s own subjects managed to do a lot of the work producers claimed they wanted when the show was in development. The letter was attached to a petition calling for Netflix to remove the show from the platform altogether which as of March, 21, 2019 has over 6,800 signatures and counting.

It is clear from the issues raised by the subjects themselves, professionals in a variety of fields and the public that Afflicted is deeply unethical and presents a severe case of misrepresentation. The material which made the final cut is intended to be as emotionally impactful as possible. This is not to say that documentaries cannot be both objective and emotional. However, it is interesting then to consider the way in which Netflix tags the show. When looking at the “Details” page, viewers are told outright that the show is “emotional.” Clicking on the tag takes you to a page of other programming that is similarly labeled. Here, movies like Schindler’s List and shows like Grey’s Anatomy are suggested far before other documentaries. It is hard to ignore the associations the platform is creating. Afflicted is intended to pull on the heartstrings of its audience in the vein of a Shondaland production, not educate viewers on what they are seeing. Netflix is more likely to describe the genre of the show as being “Reality TV” than a “Documentary.” Indeed, the editing strategies and baiting techniques employed by the filmmakers, mentioned by virtually all the subjects, are quintessential in the making of The Bachelor, but are unlikely to be found in any of the nominees for best documentary at the Academy Awards. Jill, who suffers from Multiple Chemical Sensitivity, envisioned the project she was getting into as a “serious documentary… with science… graphs, interesting animations, respected, cutting edge scientists and doctors across specialties as well as alternative practitioners.” These practices are ultimately responsible for much of the backlash subjects faced following the show’s release.

Lacking important information which would give legitimacy to the subjects’ illnesses, many viewers interpreted the series as a cry for mental treatment. Arguably, one of the most important omissions made by the show is that each of the seven individuals had to “pass a psych evaluation to participate in filming.” But if that information was available, all the controversy which surrounded the film would be gone – or at least significantly diminished. The subjects initially believed that their struggles with chronic illness would be shown through what they refer to as a “compassionate lens,” and that their openness might lead to greater awareness of their conditions. While the latter certainly happened, it did not have the positive outcome Bekah, Jake, Pilar, Jill and Jamison, who penned the group’s letter, hoped for. Instead they were met with doubt and hostility which impacted them and others who suffer similarly. The letter to Netflix and individual subjects’ testimonies provide links to research and primary doctors’ notes which back up their diagnoses.

In a time when viral fame is increasingly pursued through spectacle and controversy, Afflicted is a reminder that science can be warped suffer when packaged for mass media consumption. There must be a direct intention to depict truth, rather than using creative editing and other unethical means to transform the pain of others into a vehicle for internet notoriety and capital gain. The last year has been a milestone year in calls for accuracy in representation in film and the reaction to Afflicted is yet another indication of the growing call for conscientious filmmaking.