Whatever else Susan Sontag did, she gets a ticket into heaven for Illness as Metaphor (link to isbn.nu).
For those who haven’t read this invaluable little book, here’s a thumbnail: She looks at medical conditions are treated as moral problems instead of as diseases. Her examples are tuberculosis and cancer, and in a later supplement, AIDS.
The telling point she makes is this: If an illness is both threatening and mysterious, so that it can kill or disable at any time but is not understood or curable, its cause will be assigned to something socially determined. TB was thought to result from too passionate and expressive a personality, and sufferers were told to lie down and stop reading poetry and having romances. Later, cancer was ascribed to holding in , and patients were blamed for not expressing themselves.
In both of these cases an inexplicable affliction was linked to a social prejudice, and without evidence this was accepted. And in both cases the patient’s behavior was blamed. It’s easy to see why AIDS was added in her supplement. Another mysterious and threatening ailment was entirely blamed on moral and social problems, so that the actual biological problems were poorly investigated and patients were blamed and ostracized.
Since cancer and AIDS are still deadly and mysterious in affluent societies, the problem remains. Any theory that presents a moral enemy as the cause of these diseases will be accepted by the appropriate group. If your group dislikes pharmaceutical companies, governments, synthetic chemicals, homosexuals, meat, science itself, or any other socially contentious force, then moral certainty will be applied to medical uncertainty.
Some of these fears may be accurate. Cancers can be caused by trace amounts of metals or chemicals, or by radiation. Birth defects and crippling illnesses result from exposure to toxins and infectious agents in pregnancy. People did get AIDS because governments and medical agencies chose not to screen transfused blood, and people died of AIDS because of malign neglect by the same authorities.
But the problem remains technical at its heart, and not moral. Sassafras oil is a natural herbal carcinogen. Deadly nuclear radiation can cure cancer. AIDS doesn’t care if your behavior is socially approved; it justs kills you. Magical thinking will sometimes solve your problem, but it’s more likely to make things worse for yourself and others.
A post today by ofmonsters reminded me of some of the current villains in the alt-culture world: vaccination, cow’s milk, refined sugar, white flour, processed foods, the Western diet, gluten, “toxins,” etc.
Some of the things in this list are bad news for people with particular medical problems. Other things in this list are worthy of investigation for basic personal health: too much processed food and dairy and a diet rich in meat will in general make people less healthy, for example. And some of them are meaningless. “Toxins,” for example, always refers to some nebulous and poorly defined environmental evil that must be cleansed, rather than to actual known toxic substances, all of which are different from each other. White flour has less fiber in it, but is not otherwise evil. Refined white sugar and brown sugar and honey and rice syrup have different flavors but provide the same dangerous blast of calories.
The vaccination fear is paranoiac. Vaccination is a symbol of government power, scientific arrogance, and threats to children. In a state of ignorance it’s understandable that someone would fear this. Without vaccination we have piles of dead children and later piles of dead adults. It’s not negotiable. Tagging vaccines with autism (another poorly understood and incurable affliction) gave the whole counterculture a perfect condensed symbol for their dislike of white coats, compulsory medical treatment, and the medical-industrial complex. But they’re wrong, and being wrong about vaccination threatens everyone.
What I have to say to these fearful people is this.
1) Read Sontag, or at least work at understanding the concepts she talks about. Watch out for moral certainty when you’re solving medical problems.
2) Your fears of government, pharmaceutical companies, toxic substances, radiation, bad diets, dangerous assumptions built into Western culture, and the centralized corporate meat-centric incompetent business of Big Food are all completely legitimate. There are deadly problems and bad people and very poorly organized institutions.
So we do have big problems, and the problems are similar in kind to the ones you’re seeing. The problems, however, do not result from science. They result from bad engineering and wickedness. The scientific method is how we know these things went wrong. That’s why we know that heavy metals in our food are bad, and that factory farming kills, and that it’s better to cut down on the cow’s milk and eat more fiber, and that cancer can result from contamination of food and water.
The scientific method is also why we know that vaccination is a good idea, that sassafras is a carcinogen even though it’s natural, that “toxins” means many different things and not one, that chelation is a dangerous treatment for specific situations, and that white sugar and honey will give a diabetic the same dangerous load of concentrated calories. It’s also how we found out that stomach ulcers were often caused by an infection and not by “stress.”
The antidote to unreasoned panic is not less science, but more. The scientific method is, to paraphrase Churchill, the worst way of interpreting illness except for all of the other methods tried. This includes the method Sontag clearly outlines. If someone says that the illness is due to “stress” or “toxins” or “Western diet” or “gay lifestyle” or “the government,” stop and watch closely.
Choosing an attractive moral or social cause for your terrifying unexplained problem may feel satisfying. Don’t take the bait.
Be My Blog 
This was really good.
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While your post seems to address the concept of ignorant-population assigning nebulous diseases to nebulous causes, care must be taken to ensure that the scientific community also applies a level of rigor in classification. Too often, diseases which have similar symptoms are assigned under the aegis of nebulous-disease-du-jour. A good case in point would be “irritable bowel syndrome.”
I can offer a firsthand family example which shows both laziness on the part of the health care provider and how easily it is to fall into the trap of assigning causality where there is none. My first cousin was not developing properly, mentally. His attention and speech and reaction to stimuli were severely, severely off. The doctors immediately said “He’s autistic, there’s no cure, here is some literature on dealing with an autistic child.” My aunt, who is stubborn, refused to believe the diagnosis, though a second, third and … nth opinion seemed to confirm it.
She ended up reading some of the alt-health literature that purported a link between an allergy to, say, gluten or casein or god knows what, that causes some sort of [hand waving about inflammation or problems with proteins or something] which equaled autism. She experimented with different combinations, and in the end, after removing wheat gluten and milk from his diet (rice turned out to be okay) he developed normally and is actually a bright young kid at the moment.
This is in no way a defense of the “allergies to common foods = autism” theory. I don’t necessarily buy that because I haven’t seen hard science back it up. What I will claim is that some sort of allergy to food was impairing his cognitive development. The question, and this is one only rigorous testing can shed light on, is whether this condition is equal to autism. Not equivalent, not similar, not tantamount: is what my cousin experienced autism. Only when this first principle is established can the claims of etiology be visited.
Thus, there has to be special care taken on the provider’s side to not abuse the establishment of this first principle, the diagnosis, out of laziness. If the doctor says “This is similar to autism” or “This might be autism” or “This could be autism” or “I don’t know”, then finding out that a certain therapy may or may not work IN THAT CASE can not be easily applied as a generality. When a doctor is lazy and says “It’s autism” without more probing, then if removal or addition of a certain X-factor (gluten, milk, chicken soup, greased-up dildos, whatever) is going to stick in people’s minds as being applied to the general disease. With diseases that are poorly understood or which apply to an entire spectrum, the risk of this happening is more likely.
If I may toot my own horn here, this is part of the project on which I work. I work in the military health care arena, and one of the tools we’re working on is a giant database of patient information that allows searching and cross-referencing by SYMPTOM as opposed to DIAGNOSIS (though it is possible to search by diagnosis as well). This is important because many diseases share similar symptoms. For example, flu, salmonella, various bacterial infections, and various viral poxes will cause fever, chills and muscle aches. The treatment method is not necessarily identical. Nor should it be.
For the record, I don’t think my cousin had autism.
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I agree. I should have been more verbose about that. The problems with food and environmental causes and nebulous ailments exist on both sides of that line between ignorance and information.
Actual holistic diagnosis and careful attention to recent research is a huge win. Reflexive dismissal of symptoms and magical diagnosis at the health food store are two kinds of huge loss.
The shameful treatment of women with any kind of culturally defined “female trouble” is the obvious example of that kind of dismissal, and the diagnosis of disorders that do have links to diet and environment rather than being simple infections or structural problems is still done very poorly by physicians who can’t look outside a very small box.
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While your post seems to address the concept of ignorant-population assigning nebulous diseases to nebulous causes, care must be taken to ensure that the scientific community also applies a level of rigor in classification. Too often, diseases which have similar symptoms are assigned under the aegis of nebulous-disease-du-jour. A good case in point would be “irritable bowel syndrome.”
Diagnoses like IBS are rather bogus, but I’m not sure what else you can do. If you don’t give it a name, it gets even less attention, and it’s hard to subclassify when you have no clue what causes it. Now they talk about “post-infection IBS-D” because they have one or two clues.
IBS also seems to be an example of how, if you (society, the establishment) can’t ascribe a socially determined cause, and have no clue what the cause actually is, you can at least ascribe a mental one without evidence, dismissing IBS as being “ALL IN UR HEAD!!1!!copter”. Of course now there’s evidence that hypnosis often works rather well on IBS, so something with the head is going on (something more than you’d expect with any disease) but that’s a relatively recent discovery.
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Yeah. Favorite alternatives to “all in your head” are “stress,” “inflammation,” and “something you did wrong.” Pretty much what Sontag said. If they say it’s one of these things, check again.
“Chronic Fatigue Syndrome” was rejected because too many of the sufferers were middle-class women. Years later, there’s still something very wrong that they’re calling CFIDS, but it’s still poorly understood and now it’s seen by the wider population as malingering.
Critical thinking involved: minimal.
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I posted about this exact topic on my MS blog less than a week ago.
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Yeah, that’s part of the reason I wrote this. I’d written similar things before but I got all EXCITED again.
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I am glad you got EXCITED.
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yay excitement!
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I should print this and present it to a few colleagues of mine who need to hear it. 😉
Also, I must read Illness as a Metaphor.
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This is wonderful.
However, in this otherwise great post, I was bothered to read that “white sugar and honey will give you the exact same diabetes.” Sugar does not cause diabetes, at least according to the American Diabetes Association (see myth #3 on http://www.diabetes.org/diabetes-myths.jsp). If you have evidence to the contrary, I’d be delighted to hear it.
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oops
I implied causation where i did not mean to. i will correct this when back at my real computer.
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Excellently written! I really enjoyed your post.
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really great post – I balanced a salt crystal on my screen while reading to offset the toxins though, hope you don’t mind
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(although: as an ex-psych nurse, I will rep for stress – not “being stressed out,” but actual stress, which is a definable physical event – as a huge contributor to/complicating factor in many, many medical conditions)
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I’m in a weight management program where they talk about “stress” as an inhibitor to weight loss. But it’s never just “stress is bad for you and makes you fat”. It’s always presented as “stress causes these bodily reactions and this hormone release, and we know that these impact your metabolism in this way”.
Similarly with “not getting enough sleep”, “eating too much refined carbohydrate”, “overdosing on saturated fat”, and “food sensitivity”; they are constantly reminding us that being overweight is not a reflection on us morally, but is a condition which has a bunch of underlying hormonal and metabolic factors, most of which can be managed.
I’m lucky that I don’t have a thyroid or other serious endocrine problem that causes weight gain. I don’t know how they handle those edge cases.
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Right. “Stress” means many things, including post-surgical reactions, cocaine abuse, a week without sleep etc. It’s another “you keep using that word” situation.
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One thing I’ve always wondered about “processed food” and the supposed evils thereof: what do we mean by “processed”? Does that include toast?
Because toast, ya know, is just a slice of bread that’s been, uh, processed.
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This brought to mind a thing that troubles me, and that I see as the opposite side of the same coin you’re talking about here. That is, the idea that moral rectitude is a balm to prevent illness. For example, it is so often that when it is announced that someone has cancer, people will respond with, “But he exercised daily!” or “But she always ate such a healthy diet! She wasn’t a pound overweight!” Diet and exercise are frequently considered morally good. (If your vice is greed, it’s all good. If your vice is sloth or gluttony, you deserve whatever you get.)
You might find Emily Martin’s work interesting. She works on the anthropology of medicine. Her book “The Woman In the Body: A Cultural Analysis of Reproduction” is groundbreaking and eye opening. I’ve been meaning to read “Bipolar Expeditions: Mania and Depression in American Culture.” I’m confident that it will be fascinating.
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