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Why the Netflix Docuseries 'Afflicted' Is Harmful for the Chronic Illness Community

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Sometimes the news isn’t as straightforward as it’s made to seem. Paige Wyant, The Mighty’s Associate Chronic Illness Editor, explains what to keep in mind if you see this topic or similar stories in your newsfeed. This is The Mighty Takeaway.

Editor's Note

This article contains spoilers for the Netflix docuseries “Afflicted.”

“Afflicted,” a new Netflix docuseries that premiered on August 10, follows seven people who live with chronic illnesses.

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. Instead of letting people with chronic illness tell their stories, their diagnoses were twisted and painted as being “all in their head” for the audience’s entertainment. Those with chronic illness already face so much stigma, judgment and disbelief. The last thing our community needs is popular media perpetuating the idea that our illnesses are made up. It’s incredibly harmful in terms of receiving better support and understanding from loved ones, and I can’t imagine it does anything to help further research.

Here’s what “Afflicted” got wrong in its portrayal of people with chronic illnesses:

1. “Afflicted” makes a game out of guessing whether these people’s illnesses are real or “all in their head.”

Where do I even begin? Every episode and every person’s story was presented with the question: Is this real, or is it all in their head? I thought this was supposed to be an educational docuseries, but it felt more like a sick puzzle meant to entertain healthy people. (News flash: The struggles of people with chronic illness should not be a source of amusement.)

For instance, there is one scene in episode three in which we see Jake sitting in bed, feeling a lump on his leg. He fears he may have deep vein thrombosis, or a blood clot, that could turn into a pulmonary embolism – something people who are sedentary or bed-bound are at a higher risk of developing. He begs his parents to take him to urgent care (we see his mom tells his dad it’s probably just a pulled muscle), and though we don’t see his interaction with the ER doctor, we can hear them talking. “Where is that bulge you were feeling?” the doctor asks. Jake shows him. “Right here. Yeah, right there. You feel it, or am I crazy?” Silence. Then the episode ends.

“Afflicted” certainly knows how to pull off a cliffhanger, but they do it in such an exploitative way. In this case, you’re left with Jake’s lingering question: “Am I crazy?” Is he crazy? Is he making it up? That’s the hook that pulls you back for more – finding out if these people are “crazy.” It’s shameful, and it does such a disservice to the chronic illness community.

In the next episode, we find out the ER doctor’s answer: He doesn’t feel anything wrong with Jake’s leg, and suggests some anti-anxiety medication, insinuating that Jake is experiencing some hypochondria. This is a frustrating situation I think many of us with chronic illnesses can relate to, but beyond showing Jake say that it “feels really insulting” to be told it’s “all in his head,” the show does nothing to address this issue. When they paint a person as unreliable (since he’s potentially making all this up), all you’re left with at the end of this segment is, still, the lingering question of whether Jake is “crazy” or dealing with an illness that’s psychosomatic. That’s not only unfair to Jake, but to everyone with Lyme disease, and to everyone with a chronic illness.

This is only one example. It would be one thing to create a film or series documenting the doubt or disbelief chronic illness patients face, but by asking “is this person making it up?” then leaving the question open for the audience to decide. “Afflicted” is doing nothing to inform or correct misinterpretations.

2. The series puts a heavy focus on the “mind-body connection,” which creates the impression that the illnesses featured are psychosomatic or largely psychiatric in origin or nature.

The show seems intent on understanding the mental or emotional triggers that “caused” each of the seven people to develop their conditions (I put “cause” in quotes because none of the conditions featured in the show have any agreed upon causes; the show states so itself in the opening scene). No one initially expresses that they have a diagnosed psychiatric condition. Only Jake mentions that he has generalized anxiety disorder.

Every person, and/or their loved ones, is interviewed about their mental state and past emotional trauma. Jamison was in a car accident in which another person was killed, Jill recently went through a difficult divorce, Pilar and Jake were both working hard and achieving success in their careers but under lots of stress, Bekah has a history of depression and self-harm… If you had no knowledge of chronic illness, watching “Afflicted” would lead you to believe that these diseases are caused by a stressful or traumatic situation. It’s true that research has proven there are links between stress and disease. A study published in June, for example, revealed that people with stress disorders are at an increased risk of developing an autoimmune disease. But this isn’t always the case, and it doesn’t mean the physical disease is any less “real” or valid because it may have psychological roots.

The sixth episode, “Mind & Body,” begins with a haunting sequence of the voices of friends and family members of all seven people voicing their concerns about the “physical” and “real” nature of the illnesses.

“I wonder, is he imagining this to the point that it becomes real?”

“Is this in her head? Is it psychosomatic?”

“Some of it’s in her mind, I guess.”

This is accompanied by video footage of the each of the sick people just sitting, staring at the camera, some rocking back and forth. Add in strange, screeching music, and the scene is truly eerie. It then moves to a brief interview with psychiatrist Richard Friedman, M.D. where he says:

I view the distinction between the brain, the body and the mind as artificial boundaries. They’re seamlessly connected to each other. Your brain is capable of producing physical, real alterations by itself. The notion of something being all in your head is interesting. It’s no less real than in the body.

Without any context, I wouldn’t necessarily disagree with his quote. From my own health experiences, I know my physical and mental illnesses can greatly affect one another, and nothing in my body happens in isolation. And of course, even if something is happening “in your head,” meaning you having a mental, psychiatric, psychosomatic, etc. illness, it’s still just as real, just as valid, and you are just as deserving of support and treatment.

The problem is the use and placement of this quote, and the interview with a psychiatrist, in this context. Despite any doubts or disbeliefs the makers of the docuseries may have, none of the illnesses they feature have been identified by doctors or researchers as psychiatric conditions. Again, maybe there are some psychological stressors or traumatic events that played into their development, but we don’t know that for sure, and it’s not the place of filmmakers to figure it out. So with all due respect to Dr. Friedman, why was a psychiatrist interviewed about physical illnesses?

Placing Dr. Friedman’s words in this context is incredibly sneaky. We’ve just heard the doubts of friends and family members about whether the afflictions are imagined, all in the head, psychosomatic and so on. Then we hear a trained, certified medical professional weigh in. Dr. Friedman doesn’t say these people’s illnesses are all in their heads. What he does say is that even if something is in your head, it’s still real. Like I said above, on its own, I think that’s a great point. But here… it comes across as though Dr. Friedman is suggesting the people on the series have conditions that are very real to them and causing them serious symptoms that deserve treatment, but ultimately are psychiatric in nature.

I spoke with Jamison about his reaction to “Afflicted” now that it’s been released. I asked him if he thinks the series ultimately helps or hurts those with chronic illness, he said:

I don’t think it helps much, if at all. And in some cases I definitely think it hurts. I think mental illness is a serious topic that needs attention, but this series was not presented to me as a documentary about mental illness. The producers had us complete psyche evaluations before filming and yet they portrayed some of us, however implicitly, like we had mental illnesses. That was a pretty slimy move in my opinion.

While I hope researchers continue to look into possible causes of chronic illnesses, as it could help unlock answers to potential treatments (or even cures), I felt that the “Afflicted” producers seemed intent on uncovering the cause themselves, and intent on that cause being psychological. I don’t know these people’s stories, so I certainly can’t speak for them, but it seems as though each of their narratives was heavily crafted and shaped by the series to suit their agenda of providing entertainment (not education) for the healthy world.

3. There was a glaring lack of science and research regarding the conditions featured.

Since “Afflicted” is a health-based docuseries, I expected to hear scientific information about each condition, interviews with medical experts, statistics about the prevalence and the latest research and findings. For a show that focuses so heavily on illnesses, “Afflicted” noticeably lacked in hard science. Viewers get basic definitions of each condition, but I don’t recall seeing any numbers or facts about any of them. Maybe data isn’t the most “fun” thing to put in a TV show, but how can you in good conscience create a health documentary that abandons all science? It baffles me.

Instead of science and research, “Afflicted” focuses more on mental health and alternative healing. There are frequent interview scenes with a psychiatrist, even when there’s no clear psychiatric connection, and multiple interviews with people who specialize in natural healing and alternative treatments. I mean no disrespect to what they do, but I would have preferred more screen time (or at least an equal amount of screen time) with doctors and specialists.

To focus only on natural healing does a disservice to the chronic illness community. While many of us may use and benefit from natural healing techniques, often we require a diverse combination of medications and treatments.

I am not here to criticize anyone’s healing journey or the choices they make regarding treatment. However, I do think some of the doctors, healers and treatments featured were included purely to raise skepticism, doubt and perhaps even amusement. Their segments weren’t educational, they didn’t help you better understand the person who is sick.

Pilar is perhaps the best example of this. (The two scenes I’m about to mention both occur in the “Mind & Body” episode.) One of her treatments involves energy healing, in which she talks to an energy healer, Beth Daniel, on the phone. We see Pilar holding her phone against her abdomen while Beth speaks and reciting phrases to herself, such as “I want to be healthy.” Later we see Pilar lying in bed reciting “codes” to herself that Beth has prescribed, which supposedly tap into frequencies in the body needed for self-healing. Pilar recites these codes, which sound like made-up sounds, then says she feels so much better.

Further along in the episode, Pilar visits her chiropractor, Peter Osborne, DC, who runs a functional medicine clinic, and he talks at length about the power of placebo in helping Pilar heal. He explains that he is “activating” placebo in her because “the power of belief is so strong.” Ultimately, he says, “We’ve got to take her out of that environment when her body can handle it and allow her to not have a psychosomatic response.” He clearly seems to think that Pilar’s multiple chemical sensitivity is a psychiatric illness (at least in large part) rather than a physical illness.

The overall impression you get from this episode, therefore, is that Pilar’s illness is totally “in her head.” Energy healers, the placebo effect… chronic illness starts to sound pretty hokey. If I were watching this as someone who has no experience with or knowledge of any of these conditions, I would definitely think a lot of it was made up. If most of the people watching this docuseries don’t understand chronic illness, I fear that’s the conclusion they’ll come to as well. The way “Afflicted” presents these stories is not just irresponsible, it’s incredibly damaging.

4. The series placed far too much emphasis on the doubts of family and friends.

There was a great deal of interview time devoted to the friends and family members of those living with illness. This in itself is not necessarily a bad thing – loved ones may often be able to provide additional perspectives and information, and help support and advocate for those who are sick. Many of the people in the series relied on those closest to them for their basic, everyday needs.

What struck me though was the tone of the family/friend interviews. Not all, but many of these people doubted their loved one, questioned whether they were a hypochondriac or struggling with a psychological disorder, and expressed their frustration with the situation. Of course, it’s normal to be frustrated – chronic illness can take a toll on relationships, emotionally, financially, sexually, romantically… And when you can’t “see” someone’s illness, and none of the tests are coming up positive, I understand how it can be hard to wrap your head around it all. A little bit of doubt, dare I say, is pretty normal, too. I know I even doubt my own symptoms sometimes, and I’m the one experiencing them.

For instance, there’s Star’s brother, Michael, who seemed weary and exasperated with the entire situation during his one short interview. When the woman behind the camera asked if there had ever been moments when he and his family members were like, “there’s no way she’s so sick,” he responded, “I’d say that if I’m really answering honestly, that those thoughts go through your head. If she is creating this, whether it’s conscious or unconscious, is it a cry for help or attention? I don’t know.” The scene then cut to Star spending some time with her friends and opening a gift which contained a black article of clothing, on which she commented, “When you’re healing, you got to look hot.” Juxtapose Michael’s comment about attention-seeking next to Star’s comment about looking hot, and it’s not hard to believe that’s exactly what she’s doing.

But the sheer amount of time in which the friends and family members are shown voicing their doubts sends a message. They are the ones who are closest to these sick individuals, and the ones who are supposed to be their greatest allies, and fiercest advocates. So if they’re doubting these people’s illnesses – the people they love – why should the rest of us believe them?

It’s heartbreaking and incredibly frustrating. Instead of showing so much footage of friends and family members voicing their doubts, why not spend more time interviewing people about how we can make positive strides forward in diagnosing and treating these diseases? Why not use the time in a constructive rather than destructive way?

5. From what I could see as a viewer, the producers and crew seemed very disrespectful and dismissive of the people with illnesses.

I, of course, was not physically present during filming, nor was I one of the people featured, so I cannot speak to what the day-to-day was like for these folks. But there were a few moments in which the crew seemed to completely disregard the health and personal needs of those with illnesses for the sake of their production (and they actually decided to include these in the final version of the series?!).

The way the crew treated Carmen and others with electromagnetic hypersensitivity stood out to me the most. Because of Carmen’s condition, she experiences pain and other symptoms around much of the equipment the crew was carrying, including wireless microphones, smart watches and cell phones. She seemed willing to put up with it for a few days (perhaps for the sake of raising awareness?), but was also firm about her boundaries from the get-go, telling the producers and camera people that she didn’t allow cell phones or Wi-Fi inside her home, and showing them an alley behind her house where they could take their calls.

It’s impossible for us as viewers to know to what extent the crew obeyed these rules and respected Carmen’s boundaries. But at the end of the first episode, we see Carmen break down, on the verge of tears, upset and in pain because the production equipment is aggravating her symptoms. She asks those behind the camera to “step it down” and “come up with another plan,” to which a woman simply says, “OK.” The camera films Carmen walking away before the same woman says, “OK, let’s cut please.” There’s no way of knowing what happens off-screen, but to film Carmen’s pain that the crew is causing, without any apologies, seems awfully disrespectful.

Then there’s episode three. The crew is filming out in Green Bank, West Virginia, where Carmen hopes to one day move because of their restrictions surrounding electromagnetic fields. They’re talking to Sue, a resident of the area who also has electrosensitivity, and she’s showing them some of the meters she has for picking up different frequencies. But when Sue pulls out one meter and sees it spike up to 1,280, she instantly grows concerned. “Who has something on?” she asks. They soon realize that the culprit is Carmen’s wireless microphone – which Carmen usually consents to wearing, even though the electrical frequency has the potential to cause her symptoms. Sue is livid. One woman, who seems to be part of the production, says she knew phones were off-limits in Green Bank, but didn’t realize that wireless microphones were as well. “F*ck the town,” Sue says. “I’m talking about us right here with electrosensitivity.”

There are clearly unique challenges involved in filming those with electro-sensitivity, but if you do want to portray the realities of this affliction, you have the responsibility of treating the individual(s) with respect, and not pushing their limits. Their health comes before your production. Always.

Should You Watch Afflicted?

In a world where good portrayals of illness and disability in the media are rare, “Afflicted” was a massive disappointment. Rather than raise awareness for different chronic illnesses, it seemed aimed at healthy people as a source of entertainment, and a way to confirm any pre-existing doubts about the validity of many of these afflictions.

If you haven’t watched “Afflicted,” I do not recommend it – whether you’re healthy or chronically ill. It is not a responsible representation of the chronic illness community and, in my opinion, does a lot more harm than good. Going forward, I hope filmmakers and anyone involved in creating media about illness or disability does better. Employ people with health issues. Ask those of us with health issues what type of content we would like to see. And treat people, sick or not, with the basic compassion, respect and dignity we all deserve. We need to do better than “Afflicted.”

Join the conversation here:

Erin Migdol asks: What are your thoughts on Afflicted, the Chronic Illness documentary on Netflix? The documentary follows people with various illnesses like #LymeDisease and #ChronicFatigueSyndrome, and has been criticized by people with chronic illnesses for portraying the illnesses as possibly "not real." What are your thoughts on the show? What do you wish you could tell the filmmakers?

Originally published: August 16, 2018
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