We Are Still Failing People with Chronic Illnesses

Netflix’s “documentary” series Afflicted is further proof.

Following the success of Jennifer Brea’s award-winning PBS documentary Unrest, which chronicles Brea’s experience of life with a severe and mysterious chronic illness, audiences responded enthusiastically to news that Netflix would be producing a new documentary series about “[s]even people with chronic illnesses search[ing] for answers — and relief,” but the new series, called Afflicted, perpetuates outdated and harmful tropes and inadvertently mirrors our cultural penchant for dismissing that which we do not or cannot yet understand by reflecting back at us our all-too-common tendency to doubt, discount, or sensationalize that which we find mysterious or which we have not experienced ourselves. The series, from the producers of the television series Intervention, shadows: Carmen, a Spanish teacher with electromagnetic hyper-sensitivity; Jamison, a former bodybuilder who has been diagnosed with severe myalgic encephalomyelitis; Bekah, an artist and musician living in a van in the desert due to chronic mold sensitivity; Star, an athletic woman with dystonia and more than a dozen other puzzling health conditions; Jake, an aspiring film scorer with chronic lyme disease; Pilar, a young actress whose career was interrupted by severe chemical sensitivities; and Jill, a therapist who takes a plethora of daily supplements for her chronic health conditions. Like Brea’s film, the series highlights the myriad ways that we are failing those with chronic illnesses; unlike Brea’s film, Afflicted demonstrates this mostly inadvertently via its sensationalism.

The series opens with an episode called Toxic World, which draws viewers in with a statement on the rapidly growing number of people who suffer from as yet incurable and often invisible forms of chronic health conditions before slipping into a montage of talking heads: healthcare providers, patients, and carers who offer sound bites about the unrelenting obstacles those who suffer face and the frustrating lack of answers that points to woefully insufficient and inaccessible care and treatment options for the millions around the world with these conditions.

“This is now at an epidemic level.”

“I miss myself. I’m grieving.”

“The physicians are desperate…you know, clinicians, the patients are desperate.” “Millions of people are coming down with chronic diseases every year.”

From there the documentary becomes curiously reminiscent of both controversial new age documentaries and contemporary horror movies, with a dissonant soundtrack (think X-Files) and jarring special effects such as blurring, distortion, and accelerated video, presumably intended to create a heightened sense of drama. But what is scary and distressing about these conditions is the actuality of them — the fact that they exist at all — and the very real and very disturbing symptoms they create. The monologues delivered by the seven suffer from the unnecessary application of these mood enhancers and special effects.

The series also places noticeable — and alarming — emphasis on conjecture about the emotional and psychological states of the seven people it follows, dangerously insinuating that if one has suffered from anxiety or depression at any time in one’s life, for example, or been in a car accident, there is a direct correlation to falling ill with these conditions — a causation even. The series fails to acknowledge, however, that while most people by adulthood have suffered some trauma either physical or emotional, most are not afflicted with chronic illness. The series also strangely eschews the inclusion of input from those medical community experts who would have supported the veracity of these illnesses and legitimized the experiences of those featured in the series. Instead, quirky shots of alternative treatments (which are being explored by patients when successful traditional options are not available to them) take precedence. Linda Tannenbaum, the Founder and CEO/President of Open Medicine Foundation — an organization that promotes a collaborative work approach in researching and searching for a cure for conditions such as fibromyalgia, chronic lyme disease, and ME/CFS — for example, has a cameo and yet viewers are never really introduced to her or her organization’s work or to the team of Nobel laureates and National Academy of Science researchers and scientists from traditional medical backgrounds that works with her. There is no mention of other well-known researchers in the community such as Dr. Ron Davis, Director of the Stanford Genome Technology Center at Stanford University, nor are there representatives from the research centers at Cornell University, Jackson Laboratories, or the forthcoming center in development at Harvard University. Instead, viewers are granted access to alternative healers and odd-looking treatments and are, quite disturbingly, given a lesson by a medical professional who supports utilization of the placebo effect as an effective means for getting well.

The final episode, unfortunately titled Well, leads audiences to believe that those in the series are miraculously on their way to being well again with glimpses, for example, of Pilar without her surgical mask resuming her career and Jake making plans for a future with his fiancée. While these scenes may, in fact, capture authentic moments of hope or progress for the seven, choices made in the final presentation and assemblage of them insinuates that the patients have achieved these milestones because of some change not in their body but in their mind — a simple decision to finally, finally get well, despite the fact that they have expressed their wishes to get well all along. Ultimately, the episode leaves viewers with a false and faulty concept of illnesses that are well-known for their unpredictability — blips of seeming progress followed by severe and long-lasting crashes — and their inability, as yet, to actually be cured no matter how positive one’s mindset. The saving grace of the episode, if there can be one, is a scene in which Jamison Hill, rendered almost completely unable to speak by his condition, acknowledges the challenge of ever-changing nomenclature used by members of the medical community including the constant re-naming and re-classification of illnesses, re-categorization of symptoms, and ever-evolving diagnoses over time for those who are ill. “Honestly, I don’t care about how I got sick,” he says with voice technology, “as long as people recognize and legitimize what I have then it doesn’t really matter what my illness is called. All I really care about is feeling better and getting my life back.”

Despite all of its flaws, Afflicted can give clever viewers a basic glimpse into much of what afflicts those suffering from chronic illnesses: unpredictable and painful symptoms; the occasional doubt of family members, friends, and even some members of the medical community; the loss of identity and the grieving of a past way of life interrupted by unrelenting illness; the impact on long-term caregivers and, often, the loss of relationships as illness drags on; the frustrating lack of treatment options and ongoing search for accessible and legitimate treatments; and — persistent misrepresentation by those who simply do not believe in that which they have not experienced themselves.

If there is any reason to watch Afflicted, it is this:

Carmen, Jamison, Star, Jake, Bekah, Pilar, and Jill are real people and representatives of millions of people around the world so dedicated — and desperate — to bring awareness to these not yet understood conditions from which they suffer and the stunning lack of research, treatments, proper care, and cures that they will take almost any risk including making themselves wholly vulnerable in order to spread awareness and facilitate research and spur on other forms of progress. The series highlights our failure as a society to meet them in this work. The patients are forced to be their own activists and advocates while severely ill. At one point, someone in Afflicted says, aptly, that they had never realized that people in our time could even be so afflicted until they witnessed it for themselves. There is hope then that the series and the transgressions of those involved in its making may ignite a spark of recognition in others, inspiring viewers to ask, “Now that we know, what can we do?” In fact, one of the most moving and sometimes devastating features of the series is its portrait of the relationships between the patients and those who come to their aid — parents, partners, and others who care for those afflicted even as the illnesses put enormous strain on their own health and relationships and strip them of the lives they once shared, which viewers have access to via montages of photos taken of the seven before they were afflicted, in which they appear to be healthy, happy, active, and free. Still, the scene that will perhaps linger in the memory of viewers and which best encapsulates the experiences of those afflicted by both chronic illness and our chronic failure to confront chronic illness is one in which Jamison Hill, wearing an “Ask About M.E.” t-shirt and sitting up in the bed he has barely been able to leave for years, uses voice technology to tell viewers: “I’m over this shit.”

“photo of cloudy sky” by Felipe Palacio on Unsplash

has written for Vogue, The Paris Review, Granta, ELLE, Marie Claire UK, Esquire, Guernica, Electric Lit, L.A. Review of Books, & others. #ConversationsforCures

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