Netflix’s new documentary ‘Afflicted’ leaves everybody worse off.
In a move that seems to have annoyed almost everybody, Netflix has released yet another hack health documentary. ‘Afflicted’ follows seven patients with poorly understood diseases as they try find answers to their symptoms. Instead of doing due diligence and you know, ‘research’ the show meanders along with an irresponsible level of ambivalence.
It’s not hard to understand why. All of the illnesses depicted are incredibly complex. There isn’t much research, what little there is is inconclusive and some of the most prominent is flawed. To get a a meaningful understanding you have to wade through scientific papers of various quality and accessibility, read contradictory and inflammatory news articles, engage with patients and advocacy groups, researchers and families. Which would be hard work, so best just film some juicy footage and let the audience make up their minds.
The main issue with taking an ambivalent editorial stance is that it represents a complete failure of empathy. On twitter, a lot of people are pointing out that patients have ‘let their illness take over’ or ‘have made it their whole identity’, the implication being that they are complicit in continuing to be sick. In part this is due to casting choices – producers have obviously selected patients who have made the most extreme life changes. This in itself is provoking – what kind of person abandons a relationship or job or their home or spends thousands of dollars on an illness that might not be real? Sure sounds crazy to me.
To understand the decisions these people make, you have to enter a completely alien world not fully explored by the show.
When most people go to their doctor it might not all be good news. But the chances are the doctor can tell them what is wrong. They can explain what has caused their illness and what might make it better or relieve the symptoms. Most importantly, they will be able to tell patients what they should or shouldn’t do to control their illness.
Now imagine not having that. You have an illness that could prevent you from working, from completing your education or having a social life. It might make you unable to walk, affect your brain and leave you in constant pain. There is a 25% chance that it could get so bad that you won’t be able to leave your bed. You could end up needing full time care, tube feeding and complete darkness and silence. In rare cases it could kill you.
And NO ONE can tell you definitively how to control it. There is no official body of knowledge to draw on. There isn’t a diet, pills to take, lifestyle advice to reluctantly follow.
You are on your own.
You’re in pain, you’re exhausted. You have weird symptoms – one day your sense of taste is affected, your ears ring and noise or light hurts. You can’t find words or make sentences. Your vision is screwy. One day you are walking and some muscles in your leg just stop working, leaving you shambling like John Wayne with a clingy toddler on his ankle.
Of course your illness becomes an obsession. It has to. Your doctor can’t help so you seek out other people who are suffering and you share knowledge. You slog through scientific papers and read newspaper articles about how lazy and entitled and MODERN you and your illness are.
Some of the science is bad. It is based on sweeping assumptions and faulty disease models but it’s the only science being done and so it’s the loudest voice in the room.
Your doctor didn’t learn your disease at medical school and they read that news story about how MODERN and INDULGENT your disease is and they don’t quite believe in it. They read a short summary of the dodgy science and tell you that your experiences and knowledge are wrong and you just need to power through and get more fresh air and maybe see a counsellor.
But maybe that day in the fresh air will be the last one. Maybe the inevitable crash that will follow is the final destination, the one that locks you away in a dark and silent room. It happens.
So you stop going to see your doctor. But there are other practitioners you can see. They ask you about your dreams and your symptoms and how you feel. They speak confidently about magnetism or this herb or that supplement or this energy. They are attentive and sympathetic and they have answers! It’s the mercury in your fillings that did it! Or a childhood trauma or pesticides or living near power lines.
So you buy the supplement or the session or the detox or the crystal, even if you are sceptical because you’re desperate and at this stage, what are your alternatives? Wait ten to fifteen years for science to catch up and bring an effective treatment to market? In pain? Alone? At least if you can do something, anything, you are in control.
And the person selling it to you isn’t necessarily bad. They believe in their product. To them, an explanation about the ability of the molecular structure of crystals to harness or release energy sounds as logical and intuitive as any science. And it makes sense that trapped energy could be the cause of your disease because ultimately, isn’t everything just energy?
There are a staggering number of people suffering from medically unexplained symptoms. Every now and then a medical advance will come along and scoop up a small group, conferring upon them a level of legitimacy and the sympathy, social, scientific and medical investment that goes alongside it.
Multiple Sclerosis is a good example of this. Many illnesses that were well described in medical literature were swept aside by Freud and his notions about hysteria. They became so fashionable that anyone presenting to a doctor with any combination of the 100+ symptoms could be slapped with that diagnosis. Without a definitive biomedical test, there was no way to prove otherwise. The invention of the CAT scan and MRI made making a definitive diagnosis possible, conferring MS with appropriate legitimacy.
The same is true of coeliac disease, lupus and many others – once you get a test, you get the rest. Until then, you are fair game for accusations of ‘factitious disorder’ (making it up for attention) ‘conversion disorder’ (repressed trauma) or good old fashioned malingering.
Where Afflicted falls down is in its complete lack of responsibility to its subjects. It is clear that the producers cared more about the entertainment value of desperate, vulnerable people than it did the incredibly fragile and complicated stories it exploited.
Everybody is worse off for it.
Patients who have spent decades fighting desperately for dignity and legitimacy had it swept away by the strong but never quite articulated message that they are mentally and not physically ill.
Patients on the show who may well be mentally ill were cynically exploited and exposed for entertainment.
The general public who, by the way include doctors, nurses, people who allocate medical funding, people who decide who gets social security benefits and the friends, families and employers of people with these illnesses learned nothing new and may well have had their resolve that these patients are mentally ill narcissists stiffened.
And the makers lost out. They told the most boring, obvious story imaginable. They missed the part where patients have built awe-inspiring networks of support and knowledge, where they advocate for one another and themselves, raise money to fund research and push hungrily into the future of medicine.
Afflicted could have been empathetic, it could have been inspiring and affirming. It could have expanded public awareness of marginal illnesses. It could have asked questions. Instead it fell back on the centuries old formula of prurient and voyeristic exploitation.
Note: I avoided naming individual illnesses. The examples given all refer to Myalgic Encephalomyelitis or Chronic Fatigue. The principles apply to many other chronic illnesses and a further failing of ‘Afflicted’ is the implicit invitation to rank patients and illnesses based on perceived legitimacy. I wanted to avoid this as much as possible.