Afflicted is a documentary miniseries on Netflix. Released in 2018, it tells the stories of seven chronically ill people with rare, obscure, and/or controversial diagnoses. The series provides insight from the affected individuals, their loved ones, their physicians, and various medical experts as they all search for answers and relief. Due to the nature of the specific illnesses that are profiled, the major question that the documentary asks is "are these primarily physical problems or are they mental/emotional issues manifesting themselves as physical symptoms?" Building on this, the documentary raises the issue of to what extent these people are possibly exaggerating their symptoms.
The seven individuals profiled are:
- Carmen - A mother living in Virginia Beach whose life was upended by electrohypersensitivity. As a result, she cannot be in close proximity to things like cell phones, wireless routers, certain types of lightbulbs, and a whole variety of electronic devices without experiencing headaches and chest pain.
- Jamison - A formerly active young man in his 20s who has been essentially bed-bound for 2 years due to the effects of chronic fatigue syndrome. He is frequently so weak and in so much pain that he has to use a text-to-speech app on his phone to communicate.
- Bekah - A young woman who lives in a van in the middle of the California desert to counteract the effects of mycosensitivity -- that is, sensitivity to mold and fungus more generally.
- Star - A woman who has received 12 separate diagnoses for illnesses such as Celiac disease, Hashimoto's thyroiditis, Raynaud's disease, phospholipidemia, and trigeminal neuralgia.
- Jake - A musician who has put his life on hold to deal with a diagnosis of chronic Lyme disease and other issues that elude simple categorization.
- Pilar - A young actress whose career and marriage were stalled by multiple chemical sensitivity to the extent that she rarely washes or changes her clothes due to the chemicals in most commercially available laundry detergents. She lives separately from her husband partially because she cannot physically tolerate the chemicals used in his laundry detergents, shampoos, and soaps.
- Jill - A successful psychotherapist whose life fell apart after she moved into her girlfriend's house and had a severe reaction to the mold inside of it. She is trying increasingly esoteric treatments to find some type of relief from her health problems.
The premise of this show appealed to me for two main reasons. Most obviously, my own current experience with a chronic illness -- albeit one that is not particularly controversial or poorly understood -- has definitely made me more cognizant of and sensitive to people whose lives have been turned upside down by their own bodies. But I also had something of a professional interest in the show. Before my health issues got the better of me, I had most recently worked as a medical disability examiner. I was one of the people who would pore over medical records and take statements and do investigations on behalf of the Social Security Administration and the state of Florida to determine whether or not someone qualifies for disability benefits.
In most instances, the answer to that question was "no" because the government has incredibly stringent guidelines for what counts as a "disability." Having a diagnosis of a debilitating condition such as, say, multiple sclerosis is not on its own sufficient to call someone legally "disabled" because its effects are theoretically not constant enough to preclude the person who has it from holding down a full-time job. Even lung cancer -- an almost invariably fatal disease with a poor prognosis across all demographics -- requires additional criteria beyond a diagnosis to be considered "disabling."
I had a bit of experience with a couple of the ailments profiled in the series. Professionally, I encountered people alleging disability due to chronic fatigue syndrome, Lyme disease, and multiple chemical sensitivity. I also encountered people like Star who would allege a litany of ailments that perhaps individually were not that bad, but in totality interfered with their lives to such an extent that they felt they could not work as a result.
The problem with the disability program -- and indeed most programs like it -- is that common sense rarely played a role in making determinations. People who apply for disability are first and foremost categorized into age groups. Afterward, they are categorized by their vocational experience (unskilled, semi-skilled, and skilled work). They are then categorized by their level of education. Finally, they are categorized by what is called their residual functional capacity (RFC) -- that is, what they are still capable of doing despite their medical conditions. Now if we look at a woman who is 54 years old with diabetes so severe that she had to have a leg amputated and she has moderate COPD on top of it, there is a very good chance she will not be considered "disabled" if her previous work was sedentary because, well, you don't really need two legs and a great set of lungs to sit at a desk all day. Realistically, nobody is going to hire someone at that age in such poor health. But the disability program does not require the person to be able to actually get hired at a job, it just requires that they could, in theory, work at one based on their RFC, education, and experience. It's cruel and harsh, but that's the way the program works.
I was very deeply conflicted in that job about making determinations like that. However, the laws and administrative guidelines that govern the disability program don't really allow for much independent thought at my level. You basically applied the relevant formulas and your determination was made for you. Each determination also goes through multiple levels of approval, so it's impossible to go rogue and be a crusader for disabled people in that job and just approve whoever you want. So needless to say, you get somewhat jaded after a while. If I can't approve the amputee with an oxygen tank, why in the hell should I make any effort to approve some 25 year old loser who's just tired all the time?
So it was through the lenses of my own experience as someone with a chronic illness and as someone who has been trained to be skeptical of them that I viewed this series. The issue with virtually all of the various conditions shown on Afflicted is that they cannot be diagnosed in the same way that something like HIV or degenerative disc disease can. You can go get a blood test right now and find out if you have HIV. You can get an x-ray that will tell you whether or not the discs in your lumbar spine are falling apart (if you're overweight and above the age of 45, chances are pretty good that they are). By contrast, there is no blood test to diagnose whether or not someone has chronic fatigue syndrome (CFS). CFS is diagnosed based purely on symptoms and the symptoms of CFS (fatigue, joint pain, stomach issues, etc.) are nonspecific enough that they can apply to a very wide range of conditions. So CFS can really only be diagnosed by excluding a whole range of other diseases that do have well-defined and widely-accepted tests. By the time a person has been tested for ten or twenty different illnesses and they've all come back negative, the question as to how legitimate their complaints are is going to be at the forefront of any doctor's mind (to say nothing of the patient's friends and family and anyone else who interacts with them).
Then you get into things like multiple chemical sensitivity and mold sensitivity. You could see an allergist to figure out what chemicals you're allergic to by rubbing samples of them on your skin, but let's be real: everybody has some level of sensitivity to chemicals and mold. If you huff a big cup of bleach, for example, you do not need a specific illness to have a bad reaction to that. Similarly, if you live in a moldy house long enough, you will eventually get sick from it. You might not be sick to the point that you can't function, but you're going to feel the effects one way or another. So are these people just milking it for attention?
Afflicted is structured and presented in such a way that one reaches the inescapable conclusion that mental illness or at least psychological factors play a major role in all of the stories. Carmen clearly seems like she has gone off the deep end, saying that some fuses in her home's circuit breaker affect her more than others and she goes so far as to contemplate moving to another state -- without her family -- so she can live in a town with no cell phones or cell towers. Jake is portrayed as a lazy asshole who just sits around all day in his room shunning his family and thinking of new health problems to get worked up about (for example, he goes to an urgent care center because a pain in his leg makes him think he has a blood clot while his father remarks that it's more likely just a pulled muscle). Our introduction to Bekah lets us know that she is a witch who believes herself to be psychic and that she has previously had issues due to bipolar disorder. Jill and Star are shown as hypochondriacs who unquestioningly follow bizarre treatment regimens that cost a lot of money, implying that they are gullible and are being bilked by quacks peddling snake oil. Star is also presented as being something of a bored, indolent trophy wife. The worst portrayal, however, is the one given to Pilar. It is heavily implied that she is taking advantage of her husband's financial resources and she states that she does not view him as a husband anymore. It's also implied that she exaggerates her symptoms as a way of avoiding contact with him and that she probably really could get out and do something if she wanted to.
As you might expect, the participants on the show were not particularly pleased with how they were portrayed. All of them with the exceptions of Carmen and Star have written lengthy articles attempting to refute or correct misperceptions of their illnesses and their personal issues in particular. Bekah's brother, Bekah's boyfriend, as well as Jill's wife have also done this. I don't think anybody would ever be 100% happy with the way they're portrayed in a documentary, however, so this in and of itself is not surprising. What is sort of surprising is that apparently the participants were all told that the purpose of the documentary was to present their illnesses in a compassionate way, which it definitely does not do. Jamison is not portrayed anywhere nearly as badly as some of the others -- since there is something undeniably wrong with the guy -- but his condition is still treated with a heavy dose of skepticism.
Having said all that, even if the information is not presented in the most even-handed way, the information is still presented. You can see the impact that all of these problems have on the participants but also the frustration that many of their loved ones feel. Carmen's husband is clearly aggravated by his wife's problems and her bizarre behavior. I would probably be pretty upset if my wife made us get rid of all of our wireless devices, unplugged everything in the house other than the refrigerator, and then moved to another state without our daughter and me. It's hard not to feel bad about the strain that Jake's condition apparently puts on his family; depersonalization is evidently one of his big issues, and he is frequently non-responsive to even the most basic attempts at contact or conversation from his family and his girlfriend. The fact that there might be a real and very serious medical problem underlying his behavior doesn't make it any less reasonable for his family to feel bad about how he interacts with them.
If you have a friend or family member who has suffered a major decline in cognitive function, you know abstractly that they're not trying to annoy you by repeating the same story over and over, but eventually it will annoy you and that's natural. The participants of course don't feel as though they've done anything to deserve criticism or negative perceptions of their behavior, but that's probably because nobody has ever personally voiced their frustrations with their situations to them. In the case of Bekah, for example, she and her boyfriend moved away from New York City to live in a van in the desert. The van is stripped down to the bare metal. Her boyfriend has received a full scholarship to Harvard and is seriously conflicted about taking this once in a lifetime opportunity because of the impact that it might have on her. That is an extreme response to Bekah's situation. Living in a van in 100+ degree weather to avoid humidity and mold is not normal. I do not personally know anyone who would do that. I would never ask someone to do that for me. I would probably not do it for anyone else. Is it unfair to portray that as bizarre? I don't think so.
There is one aspect of the show that does concern me and it's not something a lot of people would expect from me. I've never been one to look for or find racism or sexism or any other -ism in media that doesn't explicitly state it (e.g. I obviously consider the Eternal Jew to be antisemitic but I don't feel the same way about the Passion of the Christ) but I cannot help but detect a whiff of sexism in the show's decision to profile 5 women and 2 men. The fact that one of the men gets treated relatively sympathetically while the other 6 participants don't is an even more glaring issue. The unstated implication is that these bitches are crazy or are at least heavily exaggerating their problems. It's really hard to walk away from the series with a favorable impression of either Star or Pilar. They both come across as manipulative and motivated by secondary factors (attention in Star's case and monetary gain in Pilar's). Carmen, Bekah, and Jill all are portrayed as having serious cognitive and perceptual disturbances. Despite having the most extreme circumstances of all the women, Bekah isn't necessarily portrayed unsympathetically, but her story has a patronizing undercurrent of "this poor girl is in so much mental and emotional anguish that she just can't help it." This is sort of like other similar shows like Intervention or Hoarders where it seems like basically every episode is about some trainwreck of a woman who just keeps breaking her family's heart. I don't think this was an intentional attempt to produce a misogynistic documentary by any stretch of the imagination, but I do question the impression it might leave on other viewers.
Overall, Afflicted is a mixed bag for me. It is definitely interesting: the ability to see these types of "mystery" illnesses from various perspectives is nice and gives a good picture of what it's like to deal with issues that aren't well-understood even within the medical community. In reading the complaints written by some of the participants, it's clear that what they felt to be important information was omitted from the series, although much of it probably wouldn't have changed anyone's mind about anything. I do feel as though the series is unnecessarily harsh in the way it was edited in some circumstances, though, and it's probably best considered from a standpoint of dual skepticism: be skeptical of the participants but also be skeptical of the message that the series appears to try to send about the relationship between mental illness and physical problems that defy easy solutions.