As a person living with ME (myalgic encephalomyelitis) for over a decade now, I eagerly awaited the release of the Netflix docuseries “Afflicted.” A beloved member of the ME community named Jamison Hill would be featured throughout it. Everyone believed it would be another platform used to contribute to the change we’ve all been striving for.
I watched the entire series from start to finish. It follows the lives of Bekah, Carmen, Jamison, Jake, Star, Jill and Pilar, who, according to the IMDb description, live with “bizarre” chronic illnesses. The episodes were filmed in a reality TV style, with each person searching for answers and pursuing various treatments.
I related strongly to the emotional oscillations between loss, grief, isolation, desperation and uncertainty portrayed in many of their stories. This connection I felt was unfortunately overshadowed by the very palpable undercurrent of skepticism throughout the entire series. It was clear “Afflicted” was made about the chronically ill, but it was not made for us. In a nutshell their thesis was: Can we really believe these people? The mind is capable of anything, look at how sick these people are because of it!
While “Afflicted” introduced ME to a greater audience, it did so deliberately for viewers to question the validity of it, for entertainment purposes. It held people’s suffering up for debate and scrutiny without any context or education. This brought our community exposure, but in the worst possible way. Here are just few quotes taken from the series:
“I had a few patients who identified so much with their illness that they really weren’t willing to be cured.”
“What your reality in your mind is your reality in our physical world. The mind is where it starts. It’s very, very powerful.”
“They don’t want to be sick, but in an attempt to solve the problem, they’ve taken on the sick role and they’ve crowded out everything else in their life.”
“If you see somebody has a chronic illness… and if actual symptoms seem to only appear in certain contexts, let’s say, when it benefits them, it does make you wonder what is the role of the symptom.”
“You can be deluded that you are sick. You can believe you’re sick when in fact you’re not sick.”
To say these remarks are deeply problematic would be an understatement. They blatantly ignore the lengthy history of nearly every invisible illness being attributed to variations on the rhetoric “it’s all in your head”— until science proved otherwise. They are a painful reminder of the ever-present distrust surrounding invisible illness, in a world of able-bodied people. History is simply repeating itself but with a new crop of illnesses. You can now watch an entire series of chronically ill people at the mercy of others “believing them.”
Why Being Believed Matters
On the surface, one could argue, who cares if others believe you? With regards to chronic illness, the stakes are too high and we have to care. Being believed could mean the difference between having a roof over your head, versus being homeless. Not being believed could give rise to, or escalate, emotional abuse in relationships. Spousal abandonment is a real thing and is far more common when the spouse affected is a woman (ME affects four times as many women as men). It’s also the difference between obtaining equitable healthcare and research funding, or neither. Not being believed has perpetually stalled growth in both facets for ME over decades.
When we consider the psychological toll of not being believed, its impact on suicide risk is huge. We know the incidence of suicide is higher in patients with ME than that of the general population. A recent exploratory study showed that suicidal ideation in ME patients is the consequence of having a chronic, misunderstood illness. It is to no surprise then why there were warnings throughout social media to not watch “Afflicted” if you are in a vulnerable place. Other side effects of the series have included people’s chronic illnesses being attacked on Reddit and Twitter. There were even polls created to judge whether you believe individual participants in the film are actually sick. The film has added more fuel to the fires of disbelief so many of us are already up against every day.
Fortunately, there were moments of belief and incredible support shown in “Afflicted.” The unconditional love and devotion Jamison’s mother had for him brought me to tears. Bekah’s brother and her boyfriend Jesse showed a level of dedication to improving her quality of life that did too. (On a side note, I would live for a spin-off of Bekah and Jesse making music and art together, in their mold-free van, in the desert). How these individuals showed up and faced adversity head on with their loved ones, translated to, “This is our battle, and we fight together.”
In direct contrast, were the scenes that had me cringing. Jake’s father was afraid he wasn’t pushing his son hard enough – a son who is severely debilitated from chronic Lyme disease. A thought crossed his mind to throw his son into their cold pool in order to “wake him up.” Another highly triggering scene was when an emotionally detached father spoke cruelly to his son Jeff regarding his wife Pilar’s illness: “I have no empathy for what you are going through at all, and I don’t have pity for your wife.” Later we hear from Jeff’s friend who says to him, “Dude, I would have left that woman a long time ago.” These scenes made me feel the familiar pang in my heart of not being believed. Those who needed compassion desperately were shown none, despite their unbearably difficult circumstances.
Why Science in ME Representation Matters
Jamison revealed on Twitter that he was kept in the dark regarding the film’s intent, and sold on the idea that “Afflicted” was for our community. He expressed “feeling disappointed and misled.” As a result, he would not participate again if there was to be a second series. There was even a woman who stated on Twitter that she had been approached and interviewed for the series. At the time she had been disappointed she wasn’t chosen. After watching the series, she’s breathed a sigh of relief. At a certain point you have to ask: how could a series fail to represent a community this badly?
The answer is the glaring absence of science. Jamison revealed on Twitter the “Afflicted” team did in fact interview leading scientists like Stanford geneticist Ron Davis, and every doctor at the ME symposium. ME scientists had been filmed, but all this footage was cut entirely from the docuseries.
Instead the film maintained its focus on Dr. Friedman, whose credentials to speak on ME are never explained. Not only are none of the participants his actual patients, he also has never met one of them. This doesn’t prevent him from reiterating the psychological origins of disease, however. Incorrect facts also come up in “Afflicted” such as, “the vast majority of patients with chronic fatigue don’t have brain inflammation.” Jennifer Brea was quick to correct this on Twitter, by citing a research paper where brain inflammation was found in 100 percent of the ME/CFS patients studied. The fact is, there is tons of scientific literature available on PubMed showing abnormalities in nearly every system of the body in ME. They chose to not include them either, which forces me to draw to the conclusion that science was inconvenient for their predetermined narrative.
“Afflicted” missed an opportunity and did a disservice not only to the ME community, but to the chronic illness community as a whole. It is obvious no one on their team lives with a marginalized illness, because the harm the docuseries poses would have been flagged. Truthful representation matters, both in films and in the making of them. This is especially critical when you are showcasing the voices of a marginalized population you do not belong to, or are affiliated with.
What does truthful representation look like? It would be listening to what ME patients are facing each and every day. It would be learning the historical significance of our marginalization, the neglect in research funding and ostracizing by our medical systems. It would be understanding the specific obstacles millions of us experience. It’s asking how and what you can do to help. When you pose as an ally to get very intimate access to peoples lives, they’re exchanging their vulnerability for their truth to be told. Gaslighting their experiences for your own agenda undermines their very voices and lives. It is a violation of trust and ethics. It is an exploitation of people’s suffering because the film did not give back to the communities it took from. Such actions raise questions on moral integrity, as the film only contributes to further stigma, shame, trauma and suicide risk in the ME community.