Sensitive to the Whole World
July 17, 2016 9:04 AM   Subscribe

Some residents of Snowflake, Arizona, take refuge from the modern world of fragrances, wifi, and plastic. They suffer from what they call "environmental illness," a controversial condition in which inks, dyes, and electricity, among a wealth of other things, are blamed for an array of physical symptoms. A Guardian reporter and photographer interview several residents.
posted by Miss Scarlet with the Candlestick in the Lounge (80 comments total) 27 users marked this as a favorite
 
They literally live in a place called snowflake
posted by Doleful Creature at 9:21 AM on July 17, 2016 [106 favorites]


I read this a couple days ago, and don't feel like going back through it again, but does it mention that city in Virginia or West Virginia that has all the allegedly electrosensitive people?
posted by andoatnp at 9:22 AM on July 17, 2016


I believe you are referring to Green Bank, West Virginia, andoatnp.
posted by saeculorum at 9:27 AM on July 17, 2016 [4 favorites]


Since the article didn't mention it: plug for the excellent often-overlooked Todd Haynes film Safe.
posted by supercres at 9:27 AM on July 17, 2016 [23 favorites]


I hope that they have helpful brothers to bring them space blankets.
posted by Parasite Unseen at 9:33 AM on July 17, 2016 [24 favorites]


Whether this has some physiological basis, or it's "just" mental illness, it's tragic. Easy to point and laugh at but there is a lot of pain there. I wonder if there are people who have been successfully treated for it.
posted by AFABulous at 9:42 AM on July 17, 2016 [17 favorites]


I think it's possible these are people who are telling the truth. And I don't mean just that they sincerely believe their delusions, but that they are not delusional and like many health issues that were laughed at before understood- are actually experiencing physical health reactions to pathogenic substances that happen to impacting us all to various degrees. Our ignorance of the pollutions we sustain willingly in the world has not seemed to benefit humanity or the earth. Perhaps we should work on being more sensitive. We are laughing our way about pollution and those who feel it-- into worse and worse conditions. People who have had these concerned were made into jokes so that we could continue pumping more toxins into our fellow humans and the earth without any pushback.

I will grant that I don't know either way. But I will refrain from laughing at these people as the movie Safe invited people to do-- or at best sympathetically pity their assumed mental illness.

I also think that for those who may actually have actual sensitivities to these things, being disbelieved and cut off and treated like a mentally ill person encourages these groups to become isolated and find their own solutions that meet their needs- which can lead to more weirdness.
posted by xarnop at 9:42 AM on July 17, 2016 [22 favorites]


Since the article didn't mention it: plug for the excellent often-overlooked Todd Haynes film Safe.

seconded that this is a really good movie. it manages to be nonjudgemental while at the same time devastatingly critical.
posted by ennui.bz at 9:44 AM on July 17, 2016 [6 favorites]


A friend of mine wants to move there in the future, though she never mentioned this kind of thing, more of a "get away from other humans" thing.

I....oy, I don't even know. But I'm thinking plans to visit there might be a bit too complicated for me to execute if the entire town has sensitivity issues.
posted by jenfullmoon at 9:46 AM on July 17, 2016


it manages to be nonjudgemental while at the same time devastatingly critical.

Aye. I was trying to think of a good way to put that; dead on.
posted by supercres at 9:46 AM on July 17, 2016 [7 favorites]


Xarnop - there's a lot of issues at play here. If there is a legitimate allergy/reaction to something like wifi, nobody's been able to prove it in a double-blind scientific study. (and wifi's just another form of radio signal. The low power transmitter in your neighbour's house causes these symptoms, but the zillion megawatt radio station transmitter that's been there for 75 years doesn't cause the same problems?)

And there are people who may have mental health issues that have locked on to this very sort of thing and that makes it even harder to weed out what could be a legitimate complaint. Too often the physical symptoms are things that could also be psychosomatic. My dog allergy results in some very obvious and measurable physical symptoms. Getting migraines from the wind turbine in the next town over, not so much.
posted by thecjm at 9:55 AM on July 17, 2016 [33 favorites]


Previously, about Green Bank, WV.
posted by thecjm at 9:57 AM on July 17, 2016


what about all that radiation from the sun? All the magnetism from the earth?
posted by jeff-o-matic at 9:59 AM on July 17, 2016 [8 favorites]


Snowflake Arizona is also where the Travis Walton abduction allegedly took place which was the basis of the movie "Fire in The Sky". That town attracts a lot of crazy it seems...
posted by forgettable at 10:03 AM on July 17, 2016 [1 favorite]


Something is happening to these people. We make a big distinction between mental and physical illness in our culture. This is because there is still a huge stigma against the mentally ill--if you have a disorder which affects your brain, it is still seen as somehow comical (as some of these comments indicate), or due to the fact that the afflicted person isn't trying hard enough in therapy or isn't taking responsibility for their illness by admitting it's "just" psychological.

But mental illness is a physical illness of the brain. An associated condition, anosognosia, is possibly a self-protective aspect of mental illness in which the person affected believes nothing is wrong with them. It's very common in disorders on the "delusional" spectrum. I put that in quotes because the stigma is still embedded in the language we use clinically to discuss mental illness.

Perhaps the symptoms of the people of Snowflake can't be traced to a physical cause. But if your brain is glitchy, it can send you pain signals that are every bit as real as those you get from a cut or bruise.
posted by Beethoven's Sith at 10:05 AM on July 17, 2016 [62 favorites]


I should have previewed. Wow, guys. How about you check your able-minded privilege before you point and laugh at disabled people?
posted by Beethoven's Sith at 10:10 AM on July 17, 2016 [16 favorites]


It is rather telling that many of them worked in manufacturing plants and as chemical engineers. There are plenty of things that can affect your physical health and your brain, making it almost impossible to advocate successfully for yourself and impacting thought, reasoning etc. It's obvious the people they interview aren't stupid but they are also not thinking quite "right".

I have to say I do love the idea of living somewhere free of modern fragrances. I must have a superhuman sense of smell or something but I increasingly cannot stand many fragrances.
posted by fshgrl at 10:11 AM on July 17, 2016 [14 favorites]


Yeah, seems like snarking on the mentally ill that failed to successfully navigate the healthcare system and receive effective treatment is like telling poor people to pull themselves up by their own bootstraps. Even if you get a compassionate ear, which is a crapshoot, you don't always get a successful outcome.
posted by RobotVoodooPower at 10:14 AM on July 17, 2016 [4 favorites]


I think people often frame this, incorrectly, as either the sensitive people are all crazy (i.e. it's psychosomatic) or they are actually correct at diagnosing the source of their illness. Alternatively people who think WiFi gives them headaches, for example, could merely be expressing the post hoc ergo propter hoc fallacy about the source of their real condition. (Also clearly these people are sick for some reason, just because there may not be an external cause doesn't mean it isn't a thing)

I have to live with it from my mother, I am prone to migraines which as far as I can tell happen at random (though they were far more common when I was a teen-ager). My mother, on the other hand, is constantly spinning new theories for what is causing my migraines (processed meats, gluten, fragrances, you name it). She basically picks something I was exposed to prior a recent migraine and makes it fit the theory. I don't think that makes her crazy, I think it makes her human: we crave explanations.

One thing Snowflake might have going for it, if the source of these people's illness is not some broad environmental sensitivity, is a shared sense of community. Maybe whatever underlying condition they have is exacerbated by stress, simply having a place to live where you are believed can be therapeutic.
posted by selenized at 10:14 AM on July 17, 2016 [39 favorites]


Mary Swander wrote a fantastic book on her experience living with and, to some degree, recovering from environmental illness.
posted by epj at 10:15 AM on July 17, 2016 [1 favorite]


I have immense sympathy for these people. These are human beings in obvious, extreme pain, whatever the causes.

At various points in my life, I've had illnesses that used to be considered "all in one's head": chronic migraine, asthma, premenstrual dysphoric disorder. Trying to seek relief when relief isn't easily had can easily lead a person to extremes. If there were no help for my migraine pain, for example, and if I thought it made me better, I'd definitely have taken to the desert with a roll of foil.

I've also been treated for depression and anxiety, and... well, medications have come a long way, but they don't always remedy everything, and there are always side effects, some far less tolerable than others.
posted by Miss Scarlet with the Candlestick in the Lounge at 10:15 AM on July 17, 2016 [14 favorites]


I feel sympathy for these folks too. They're clearly suffering. But their self-diagnosis is also clearly wrong, yet they continue to work to do things from removing WiFi from schools and government facilities to shutting down wind turbine installations at a time where we need renewable power more than ever. That's why I get so caustic when the issue comes up, not from a lack of sympathy, but from a desire to make sure that their pseudoscience doesn't spread.

I'm glad they've found a town willing(?) to take them in, because from the sounds of it, folks in Green Bank were getting tired of the interlopers telling them how to live and work.
posted by thecjm at 10:29 AM on July 17, 2016 [51 favorites]


Beethoven's Sith (love the username, BTW) makes a very good point. I think that it's also worth remembering how many people have been failed by medicine. I don't just mean that they often can't afford it or are financially ruined by the treatments, or that the treatments have severe side-effects, or that sometimes they just don't work. I mean people who very obviously suffering and no one can even tell them what's really wrong with them. It's part of the capriciousness of medical and technological progress; we can put people on the moon but we can't cure the common cold, and even though polio and smallpox have successful vaccines, we don't have one for AIDS yet. (One very canny part of the article describes how the two women that are the foci of the article, Susie and Deb, were affected by the epidemic.) Something else that really stood out was how, when Hale revealed that she was being treated for mental illness, the subjects used that, and the promise that they could tell her the real cause of it, if she wrote a sympathetic article. These are not little ego-boost games being played by "snowflakes" (FFS, people, could we not). These are the acts of desperate people; also note the bit about the number of people in the community who commit suicide.
posted by Halloween Jack at 10:30 AM on July 17, 2016 [12 favorites]


That's why I get so caustic when the issue comes up, not from a lack of sympathy, but from a desire to make sure that their pseudoscience doesn't spread.

THIS. I do not want my world influenced by woo-woo philosophy and nutty unscientific theories, "teach the controversy" nonsense. Yes, these folks are suffering. But this is simply the extreme end of what you get with anti-vaxxers, home schoolers, pseudoscientific trends and the like.

I'm so old I remember when "oat bran" was pretty much widely described as a miracle cure.
posted by jeff-o-matic at 10:35 AM on July 17, 2016 [21 favorites]


I agree with thecjm, it's these kind of people that want to get vaccines banned, so even if they're in pain, there are externalities to their illnesses.
posted by AFABulous at 10:37 AM on July 17, 2016 [14 favorites]


yet they continue to work to do things from removing WiFi from schools and government facilities to shutting down wind turbine installations at a time where we need renewable power more than ever.

Eh, I don't think those are the same people as these. There are undoubtedly people out there who latch onto these ideas convincing themselves they have a problem or straight making stuff up to feel special but rarely do they move to a place like Snowflake and become poor. They move to Taos or Sebastopol where they can eat at trendy gluten free cafes with like minded people and sign petitions.

After years of living in towns full of people who talk about "toxins" it always amazes me how many of the drink, take drugs, smoke and can do stuff like hang around a smoky campfire for hours or go to Burning Man and do just fine. I do not think the people in this article do any of those things.
posted by fshgrl at 10:38 AM on July 17, 2016 [9 favorites]


have to say I do love the idea of living somewhere free of modern fragrances. I must have a superhuman sense of smell or something but I increasingly cannot stand many fragrances.

I agree. I am working in an office where many people, men and women both, wear fragrances of one kind or another. I'm not very sensitive to smells in general but a lot of perfume and scented products (as well as harsh cleaning products) make my sinuses burn. It doesn't take a lot of imagination for me to see someone having serious sensitivity to those things.
posted by Dip Flash at 10:40 AM on July 17, 2016 [9 favorites]


I can believe that they are really, truly suffering, but not believe that they are allergic to wifi. It's also weird to combine allergies to scented products and allergies to power lines. (I know a few people who are allergic to scented products; I get headaches from Febreze and a few other scented things, though I've never bothered to figure out which ones.)

Deb, for instance, worked as a metallurgical engineer and lived in a moldy house with a poorly-functioning furnace. It seems like there is something there, and I believe they have been failed by their doctors. But I don't believe that they have correctly identified their problem.

Or who knows -- there doesn't seem to be much research on it, because the electrosensitive are mostly unwilling to be tested on. Which is understandable, but also self-defeating.
posted by jeather at 10:41 AM on July 17, 2016 [13 favorites]


If it's not the people who are convinced WiFi signals give them migraines who are trying to get it removed from public places, then who is it? I don't think Big Ethernet is really a concern.
posted by thecjm at 10:44 AM on July 17, 2016 [5 favorites]


Thanks, Halloween Jack, also for bringing up the suicide issue. There is definitely more going on here than a bunch of people believing in woo and being obnoxious about it. These symptoms are pushing people to the edge and they are being failed by the medical system. They're seeking an explanation because their doctors don't have one, or the one they have doesn't fit with their lived experience. In my opinion (and I could be wrong) the symptoms originate with brain misfirings, but they feel physical. Combined with the fact that a lot of these people are intelligent professionals without a history of mental illness, living in a culture that stigmatizes such illness, of course they're going to insist that it has a physical cause. Rather than focusing on trying to convince the patient it is all in their head, doctors could have a little empathy for the underlying feelings. This reminds me of Morgellon's Syndrome, which most medical professionals believe is a form of delusional parasitosis. Doctors are finding that acknowledging the patient's experience along with prescribing small doses of anti-psychotics can help. It's a tough balancing act, especially when you feel like you don't want to reinforce the patient's belief system--but mental health professionals need to take anosognosia into account and work with it. It's part of treating the patient with respect as a whole person, and part of the management of mental illness, to acknowledge the patient's thoughts and feelings without judging them.
posted by Beethoven's Sith at 10:57 AM on July 17, 2016 [15 favorites]


Snowflake was not easy to get to. I’d risen at dawn, vomited on a tiny six-passenger plane, and walked one mile down a busy highway in a town called Show Low (160 miles from Phoenix) to get to Susie’s car.

Oh for God's sake. It's half an hour from I-40 and maybe an hour from Petrified Forest NP.
posted by ROU_Xenophobe at 11:05 AM on July 17, 2016 [28 favorites]


it's these kind of people that want to get vaccines banned,

The ones who move to the middle of nowhere (I've been to Snowflake, and it might not be the middle of nowhere, but it's certainly surrounded by nowhere) aren't the same people at all. Let them have their wifi-free zone where it doesn't affect me. Save your ire for the ones who stick around and try to ban it.
posted by Etrigan at 11:06 AM on July 17, 2016 [8 favorites]


I can believe that they are really, truly suffering, but not believe that they are allergic to wifi.

Say, for example, you get exposed to a metal or nasty organophosphate in enough quantities that it causes physical symptoms or kicks off an autoimmune disease that causes ongoing symptoms (very well proven to happen). And at the same time you experience organic damage to your brain. Perhaps the kind of damage that affects your pattern recognition software or your logic circuits. You get your wires crossed and you experience personality changes. So in effect what starts out as a purely physical issue becomes physical and mental and the patient is incapable of truly understanding it but competent enough to go off and live here, at least until they end up suicidal. One of the women was exposed to cadmium, which is extremely toxic and kills nerve cells. I do wonder how many of these people are curable, but not treatment compliant or whatever. That's most likely how this plays out, imho.

I am working in an office where many people, men and women both, wear fragrances of one kind or another. I'm not very sensitive to smells in general but a lot of perfume and scented products (as well as harsh cleaning products) make my sinuses burn.

Me too. I swear one of my co-workers wears a perfume that smells like bug spray. I put this down to the fact I'm the only one that doesn't have allergies and isn't constantly taking pills to suppress all the normal functions of my nose.
posted by fshgrl at 11:11 AM on July 17, 2016 [8 favorites]


We make a big distinction between mental and physical illness in our culture... But mental illness is a physical illness of the brain.

No one puts more weight on that distinction than the people in this article.

Suggesting that their suffering is real, but primarily a mental illness, is anathema. They are absolutely certain that their illnesses are caused by the physical effects of the outside world. That is the defining belief of their subculture.

I think that it's also worth remembering how many people have been failed by medicine... I mean people who very obviously suffering and no one can even tell them what's really wrong with them.

The sad fact is that much physical suffering is not caused by anything in particular, as far as we can tell. The correct diagnosis is a description of the suffering, the syndrome. There are many examples of this, migraine being the probably the most common.

The belief that there must be something "really wrong" can be part of the problem. The patients I've seen who are unable or unwilling to manage their illness in terms of symptoms, insisting on an exclusive focus on supposed root causes, have had a harder time coping with their suffering.
posted by Plasmon at 11:11 AM on July 17, 2016 [21 favorites]


Etrigan: Agreed, sort of. These people aren't hurting anyone (well, except for the leaving their young teen kids 3 miles from home by the side of a highway).

Problem is, as someone mentioned upthread, these kind of stories "don't take much imagination" to "seem to make sense" and then sure enough, this nonsense spreads. "Sort of plausible" becomes a fixed belief. Through our self-selected social media silos, TV, radio, chain emails, etc.

I have a few friends who swear about eliminating "toxins" from their bodies, yet live in the downtown of a major metropolis, with all that entails, pollution-wise. Scared of GMOs when you breathe exhaust fumes and ground up bits of tires every day? One of these friends is involved in government. Political fundraising, etc., on a fairly high level, well connected to a prominent US city mayor and former governors.

This kind of nonsense needs to be firmly refuted as FACTUALLY incorrect unless scientifically proven otherwise. One on one doctor patient stories about treating Morgellan's Disease be damned.
posted by jeff-o-matic at 11:15 AM on July 17, 2016 [5 favorites]


The belief that there must be something "really wrong" can be part of the problem. The patients I've seen who are unable or unwilling to manage their illness in terms of symptoms, insisting on an exclusive focus on supposed root causes, have had a harder time coping with their suffering.

"It happens sometimes. People just explode. Natural causes."

- look, the idea that your body can spontaneously generate excruciating, unending pain because you unwittingly felt a bad feeling or thought a bad thought and oops your brain broke your nerves -- or even for no reason at all -- is bad enough and hard enough to deal with, but the idea that you are making it worse for yourself by asking how this can be or by what mechanism it happens?

you may be correct that a species of inhuman incuriousity and placid acceptance of undiagnosed mystery illness is indeed a good way to deal with such symptoms. I would, however, suggest that people capable of such genuine unconcern for the origins of their own inner tortures are not likely to develop psychosomatic ailments in the first place.
posted by queenofbithynia at 11:22 AM on July 17, 2016 [4 favorites]


This story would make a great submission to the site "Which PKD Story Are We In Today?" 'cos it's straight out of Clans of the Alphane Moon.
posted by Doktor Zed at 11:27 AM on July 17, 2016 [9 favorites]


also, you have on the one hand authoritative people like doctors telling you that your bodily agony is just a side effect of your self-harmful thoughts and feelings, and no physical treatments can help you, only right thinking and right feeling as taught to you by therapists, and they don't want to waste precious time and money running tests on you and pretending to take your imaginary disease concerns seriously.

On the other hand, you have bonkers scam artists telling you that you can get rid of cancer and other diseases through positive thinking and cleansing and meditations, and that chemotherapy along with the rest of modern medicine is no help at all because your problem isn't really physical, deep down, and can't be cured by phony physical means.

general sane educated consensus is that the first group of people are correct and not only that, rational and scientific and reality-based. but the second group of people is none of those things and also will end up killing you if you listen to them.

think of how this sounds to someone whose mental functioning is already worn down by chronic pain and perhaps some side paranoia and mild delusions. step by step, how do they distinguish, how do they know that the critical thinking skills we all use to discount the second group of people shouldn't be used against the first group?

I think it can be explained because I believe in the healing, curative power of detailed pedantic explanations of just about everything. but there is no sense in which it is fair to expect them to just intuit the difference.
posted by queenofbithynia at 11:33 AM on July 17, 2016 [8 favorites]


I was studying this sort of thing this past Spring for a course on medical anthropology. Here's one of the links my professor sent to us: Mobile phones and brain cancer: 'no health risk' is not the same as 'safe'
posted by teponaztli at 11:36 AM on July 17, 2016 [1 favorite]


We make a big distinction between mental and physical illness in our culture. This is because there is still a huge stigma against the mentally ill--if you have a disorder which affects your brain, it is still seen as somehow comical (as some of these comments indicate), or due to the fact that the afflicted person isn't trying hard enough in therapy or isn't taking responsibility for their illness by admitting it's "just" psychological.

There is still a lot of stigma attached to mental illness, it's true. However, there are very good reasons for distinguishing between mental and physical illness that have nothing to do (not at all directly, anyway) with stigma. When you treat someone for a complaint or disease, the intervention is going to be tailored to the problem, obviously.

If someone presents with symptoms of disorientation and weakness, cardiac palpitations, trembling, and syncope, and you think they're having a heart attack and crack their chest open ASAP, but they were actually having a panic attack, you're going to have to answer some pretty serious questions. We distinguish between physical and mental illness in large part because mental illness can present symptoms characteristic of physical illness, but treatments for those physical illnesses will not only not work, they may in fact be harmful or at least needlessly hazardous. Similarly, treating someone who actually is having a heart attack with 20 mg of intravenous diazepam is not going to be super smart either.

I think there are legitimate criticisms to be made of our sort of neo-Cartesian conceptions and paradigms, e.g. of the relationships between illnesses of the physical and the mental varieties, but there are good reasons to distinguish physical and mental illness, along similar lines for the distinctions made between diseases of the liver and diseases of the skin.
posted by clockzero at 11:37 AM on July 17, 2016 [8 favorites]


Mobile phones and brain cancer: 'no health risk' is not the same as 'safe'

Please note, of course, that this doesn't mean any of the people in this town or others like it must therefore be totally right. But we shouldn't be so glibly dismissing their concerns as obviously wrong either. We should be able to talk about their health concerns - the legitimate pains and malaise that people can and do experience without explanation - without having to condescend to them. Yes, obviously we know far more about their lived experiences that they are capable of.
posted by teponaztli at 11:39 AM on July 17, 2016 [3 favorites]


Teach the controversy? No thanks. Full stop.
posted by jeff-o-matic at 11:45 AM on July 17, 2016 [3 favorites]


A minor personal anecdote: my sister and I used to make fun of my stepmom for constantly complaining about whatever environmental thing was harming her. She was one of those people and it was so ridiculous that she was worrying herself sick and buying into all those stupid trendy concerns about this and that. Ha ha.

Then she was diagnosed with some sort of disorder, and it turned out she really had been sick all that time. She wasn't trying to get attention, she wasn't inventing problems for herself, and it wasn't psychosomatic.

Her attempts to feel better by eliminating toxins and such weren't always (or even usually) helpful, but the complaints they aimed to address weren't made up. But no one around her believed her until it was proven to us, and so until we had proof, what we were doing was making fun of a chronically sick person for being so obviously a drama queen. Yeah, we really showed her, right?
posted by teponaztli at 11:48 AM on July 17, 2016 [25 favorites]


I think we should keep in mind that not all brain disease has a psychological etiology from thinking "bad thoughts" or whatever. Misfiring neurons sending phantom pain signals is a physical problem. The patient's interpretation of that problem may be strongly driven by the stigmatization of mental health issues and the continuing Western attitude of mind-body dualism. "I'm not crazy!" is a common refrain. They're actually feeling their symptoms, not imagining them. If medicine and culture framed it nonjudgmentally as an organic disorder of the central nervous system, would there still be a need to grasp at the straws of "toxins in the environment" to explain it?
posted by Beethoven's Sith at 11:48 AM on July 17, 2016 [5 favorites]


I'll mention this, besides wishing my blessings would help people like this.

Though I have plenty of personal insulation, there are times when I just get really cold and can't warm up, this has nothing to do with outside temperature. (I eat a real food diet. Fruit, nuts, vegetables, meat, not cured stuff, not dyed stuff, and so forth.) I realized one reason I got really cold was I ate two Laffy Taffies which are brightly red colored, and full of whatever else. My liver is so unused to stuff like that, this is my guess, that it did nothing but treat that stuff like poison for hours, and burned no fat to keep me warm. Now, I never eat that stuff. Well, the worst I do eat is Flaming Hot Cheetos with Limon yes it is red, but surely it is mostly red pepper, probably not. I can see where some of this stuff comes from. Taking care of one's self is a difficult thing for some people and requires extra ritual, in order to feel safe. This is not crazy, it is a coping mechanism, typically for exterior crazy that has done real harm.

Then sometimes people never catch a human break in their entire lives, live in isolation in front of screens, or on the periphery of their parents lives, and are really never cared for. It leaves an empty, unknown terrain they traverse for a lifetime if they do not find kinship elsewhere. But kinship is learned, and if none of it existed, then it is hard to know what to look for, and what the misplaced longing is. Anyway, they have named something exterior for now. Probably once the interior reality manifests as an overwhelming, unreconciled, lonliness; that is where the suicide comes in. When you have done everything you can only imagine you can do, and nothing works well...
posted by Oyéah at 11:49 AM on July 17, 2016 [2 favorites]


These are adults with full agency. And they hold very specific beliefs of what "cures" them... Sleep in a truck to stay away from plastics? Ludicrous. A visitor's pores are "outgassing" toxins? A visitor cannot use a blanket because it "traps" chemicals and poisons?

I'm sympathetic to people going through physical pain from unknown causes, and not saying anyone is lying. But giving "cure" claims like these any kind of credibility is just plain wrong, and is a slippery slope. Con men selling books, snake oil, etc., are all to eager to latch on to this stuff, and sometimes it even becomes public policy.

This is NOT harmless stuff. Again, I'm not saying these specific people are stupid or evil, but that doesn't mean that they should be presented as having some scientific knowledge about what is going on.
posted by jeff-o-matic at 12:08 PM on July 17, 2016 [9 favorites]


It took me 15 years to finally get a lupus diagnosis. Until the blood tests came back, damn near every doctor with whom I had contact, prescribed anti depressants, or told me to exercise the pain and weight and exhaustion away. I had just about given up trying to figure out what was wrong, until a friend recommended seeing a rheumatologist instead of orthopedic and internists. Since my insurance allows me to see specialists without referral, I researched around to find a female, of color, slightly plump, with stellar education and research. (There are multiple world class university hospitals near me, so this search wasn't too hard, actually.)

My initial office visit was almost 3 hours long. She listened, I mean really listened to what I said. She asked questions but with no moral weighting. And at the end she said "I can see that you are experiencing X. I believe you when you tell me how things feel. I do be live you when you say something is wrong. I will be your partner in finding out what it is, and finding a treatment. While we wait for blood tests, I would like you to try ...."

It was amazing, y'all, to have a medical professional listen, admit they were stumped, and declare that they would get to the bottom of it.

6 months later, after following both a diet and medication regime, I've gone from needing a cane to walk, to being able to climb a volcano with my son. It's amazing, and I swear to god, I've never worked as hard to get people to listen to me as I did. A simple blood series could have saved me 15 years of debilitating pain. But everyone just said it was in my head.
posted by SecretAgentSockpuppet at 12:13 PM on July 17, 2016 [78 favorites]


I have a long-time friend of more than 20 years who believes she suffers from "environmental illness" and some kind of allergy to electromagnetic waves of all sorts. I have an enormous amount of sympathy for her because she's been in a state of semi-diagnosed pain for 20+ years. (My guess from many years of friendship would be that she has some sort of auto-immune or chronic pain disorder that has never been well-treated or well-controlled, combined with some low-level mental illness along the anxiety/control axis. Even as far back as college, she engaged in various compulsive behaviors to manage her anxiety, and whenever her physical pain would flare, her compulsive behaviors would ramp way up, I assume because feeling in control of her life made the mystery pain more bearable. Anyway our friend group was always sympathy with her pain, accommodate her anxiety needs, and just let it not be a big deal.)

In the last few years (during which time I've lived across the country from her) this has all escalated dramatically, and it has become really, really difficult to watch and to accept. She has stopped basically all participation in society and her mother (who's getting pretty elderly) is her primary caretaker. She's uprooted her mom from where she's lived her whole life and moved her into a super-rural part of New England where they live far away from power lines and "chemicals" and her mother has to go into town to do e-mail and they have no lights and so on. Her mom transcribes my friend's e-mails and letters onto "safe" paper with a pen with "safe" ink (she can't even read regular mail!) and controls the flow of all potentially chemically things -- which is EVERYTHING -- for the daughter who falls apart for DAYS if she comes into contact with any unapproved substance. (But not, tellingly, until she knows it has been there.)

Meanwhile, the daughter, who has not seen anyone but her mom and her natural healers for more than two years now, who refuses to go out, refuses contact with friends, refuses doctors, etc., and freaks out if her mom goes and socializes with anyone because she comes back smelling of chemicals, lives on a trust fund that provides her a pretty comfortable yearly six-figure income. She pays none of her own housing expenses (mom pays those), and spends in excess of $10,000/month on natural healers and organic food that has never been exposed to electromagnetic waves, which apparently costs five times what regular organic food does. She spends her days doing therapeutic coloring (on special paper with special pencils) and anti-toxin yoga and reading up on all the ways chemicals and electricity are making her sick, and meeting with natural healers who encourage these beliefs. And now she's running through SO MUCH money on this special food and these healers and their various guaranteed products (clothes, cleaners, soaps, etc) that she has begun sending fundraisers to all her friends every month because she can't keep herself healthy on her generous trust fund income (that is more than like anyone else we know earns) and she wants us to kick in a couple hundred bucks a month for her radio-wave-free tomatoes.

And I just get kind-of blindingly enraged every time it comes up. I 100% believe she is in pain and has been failed by the medical system (over 20 years! that's a long time!), but the way she has uprooted and is now controlling her mother's life makes me super-angry, and the people who are outright fucking scamming her out of $10,000/month make me super-angry, and it seems like they are encouraging her to ramp up the mental illness-related issues so they can make more money off her and encouraging her disordered behavior. Which, if she felt healthier or safer I might even shrug off, but she is feeling consistently worse, and is consistently behaving in more erratic and disordered fashion, and at this point I feel like the natural healers who are "helping" her are making her sicker and preventing her from real medical care for her physical AND mental issues, because she is a cash cow for them. (Which is to say the folks of Snowflake seem positively benign by comparison.)

Anyway there's not really anything I can do but watch helplessly from far away, and I can't see any ending or escape from this cycle of deterioration and exploitation (unless she were to be institutionalized against her will, I guess). And it just makes me really sad for her, and sad for her mom, and sad that she's still in so much pain in so many years, and obviously the physical, mental, and social aspects of her problems are so intertwined as to be very, very difficult to unravel and start to solve. I don't know what the answer is, and I'm willing to accept that catering to people's unreasonable beliefs about the world may very well be part of the answer if that helps control their anxiety long enough to get them help for the physical pain!, but it also seems pretty clear to me that my friend is way, way, way past the threshold where catering to her beliefs is helping anyone. But I don't know what else you DO.
posted by Eyebrows McGee at 12:15 PM on July 17, 2016 [58 favorites]


I also can see where a lot of the "toxin" mentality comes from, because there are indeed toxins that affect people, and even when it is widely accepted, very little is done. (The Flint Michigan lead crisis, for example.) A lot of things, such as cigarettes and some pesticides, and more, were at first thought to be harmless and then found to be carcinogenic. And dyes/additives do affect certain people. I can't walk down the cleaning products aisle of the grocery store without my nose running and eyes stinging.

So if you're desperate for an answer, you might extrapolate from those very real toxins to thinking other things are toxic. And if you have legitimate allergies or sensitivities to begin with, it might be even more likely to seek that as an explanation. I'm sure the sufferers of the Snowflake malady are anxious, and anxiety can really derail critical thinking. I have a severe anxiety disorder for which I'm medicated, and I've experienced panic episodes in which I would grasp at anything for comfort, even woo things I wouldn't normally be interested in. This is what the human brain does, to one degree or another, as a survival mechanism.
posted by Beethoven's Sith at 12:21 PM on July 17, 2016 [6 favorites]


Poe's Law: Empathy for people who are suffering, regardless of cause. Ridicule for anti-vaxers and the like.

I'm not sure how Poe's Law applies here, because I'm sure many anti-vaxxers are suffering. Someone genuinely suffering doesn't mean that their proposed solution isn't rubbish that has no overlap with reality.
posted by the agents of KAOS at 12:38 PM on July 17, 2016 [6 favorites]


Conditions like this really highlight to me how biology, psychology, and culture are inextricably intertwined, and the interactions all three can play a role in illness, and in our perceptions of others' illnesses. On the one hand, these individuals are clearly sick and suffering. This is obvious from the extreme steps they've taken in removing themselves from society, the tremendous effort they expend on making their environment safe according to their beliefs, the high rate of suicide apparently due not to depression but a desire to end the suffering, and most importantly and obviously, the simple subjective self-reports of these people. On the other hand, their beliefs about the causes of their illness are equally clearly mostly wrong, as many of the physical phenomena they attribute as causes quite simply cannot have the kinds of effects on the human body that they claim.

I think Plasmon's point about a fixation on root causes playing a role in the pathology is very insightful. I think it also plays a role in the tendency of many people to dismiss and ridicule these individuals, a sort of moral pathology: if their explanation of the cause of their illness is obviously false, then (the inference seems to go) so must be the illness.

I can't know the specifics of what happened with these individuals beyond what is told in the article. But I know enough from my own personal experiences and those of people around me, from the scientific study of human behavior, and from a basic knowledge of how the medical system works that it is not too difficult to imagine a series of events that could lead someone to Snowflake.

Imagine someone with a difficult-to-diagnose illness with largely subjective symptoms like pain and fatigue. Imagine this person has been raised in a society which equates psychosomatic symptoms with being crazy, and this person has been told by multiple doctors, most of whom had seen their patient for upwards of ten minutes before determining a diagnosis, that their symptoms are, entirely or partially, due to anxiety or other psychological factors.

Imagine this person is also part of a culture with a number of beliefs about invisible substances which can cause disease, both mainstream (germs, heavy metals, etc.) and fringe ("toxins" vaguely defined, electromagnetic radiation, etc.), and in which the naturalistic fallacy is prevalent and reinforced by marketing from multiple large industries (organic foods, non-GMOs, "holistic medicine"). Possible sources of these invisible causes of disease are quite literally ubiquitous in the environment. Imagine this person, frustrated or desperate in the lack of improvement in their symptoms from doctor-prescribed treatment, attempts to identify environmental factors present which might trigger their symptoms. Due to their ubiquity, there is quite literally always at least one factor present which could be attributed as a cause. This person begins attempting to identify and eliminate these factors one-by-one, and due to natural variability in the frequency and severity of their symptoms, doing so often does appear to give some benefit.

Over time, the list of taboo substances grows overwhelmingly large, leading to increasingly eccentric behaviors. Friends and family begin to grow frustrated and intolerant of the burdens these irrational-seeming behaviors place upon them, leading to a breakdown of this person's social support network. Perhaps this is even exacerbated by a black-and-white moral thinking by this person, associated with psychological problems like narcissistic or borderline personality disorders. As this person's social ties are broken, slowly or abruptly, they are motivated to seek out and bond with others who will validate rather than criticize their beliefs and behaviors. Imagine the tremendous relief that would come from finding Snowflake, where this person is told not that they're wrong or crazy, but that everything they believe is true, and all their purity-seeking behaviors are rational, and that it is in fact the rest of society that is deeply wrong.

And yet the symptoms still persist. Perhaps the comfort of having found a community is enough to make the worst of the suffering manageable, and so the town of Snowflake really is an effective cure, of sorts. But evidently for about two of these individuals per year (out of a town of only twenty households!), even Snowflake provides no relief, and they eventually turn to the only certain end for their suffering.

So even though I may roll my eyes at the absurdity of the claims about medical causes made by sufferers of "environmental illness" (or "Morgellon's disease" or similar phenomena), I am deeply sympathetic for their very real suffering, and acutely aware that my eye-rolling automatic response is a thread in the fabric of their disease. The fact is that these people are sick, and it doesn't really matter whether the etiology is somatic or neurological or psychological or a combination of the three.

In any case it's clear that the American medical system is poorly equipped to accurately diagnose and treat individuals with largely subjective symptoms, as SecretAgentSockpuppet's story makes clear. Further, American culture is poorly equipped to recognize and reasonably accommodate individuals with this form of disability.

Snowflake itself is a symptom of deeper causes, some of which we know, and some which we don't know. A little epistemic humility does us all good.
posted by biogeo at 1:25 PM on July 17, 2016 [17 favorites]


These are adults with full agency. And they hold very specific beliefs of what "cures" them... Sleep in a truck to stay away from plastics? Ludicrous.

You are asking people who have found a thing that they can do, that they can afford, and that helps them feel better, to not do it because even though it helps, it shouldn't help. That seems ludicrous too.

It's like DIY CBT, if you like. If you give yourself a trouble with your brain, sometimes you can make it go away with your brain. Many of these people have already tried going to doctors, tried taking various drugs and therapies and either asked for tests that were denied them or took the tests and got no useful results. The anti-psychiatry/psychology/medicine/evidence sentiment isn't something that was propagandized into all of them, and it isn't in all cases a result of paranoia or stubbornness or ignorance. Sometimes it is because they trusted doctors and did as they were told and it did not work, and then they discovered that was the end, not the beginning, of the reality-based help available to them.

You can see right in this thread the scorn for people who want to know the detailed facts and the test results and the root causes and the reasons behind what is wrong with them: science and logic and clear chains of causality are for their betters, and the poor crazies are only making themselves feel worse by looking for "answers". The right to know and understand is not one of the rights patients have. So sometimes they give in and in lieu of a real medical answer they can't get, they make up a superstition and believe in it real hard, and because as we keep being told, the mind has strange powers over the body, it sometimes works. I would feel easy about wrecking their illusions if and only if I had a helpful treatment to offer them.
posted by queenofbithynia at 1:39 PM on July 17, 2016 [9 favorites]


Read my other comments. I have no problem with these particular people. I do have a huge problem with anything other than letting them do their thing off in the middle of nowhere, while publicly, scientifically, stating to the vast majority of the general public that their "cures" are pure nonsense. And sure there's freedom of speech (or religion/religious mania, which is my take on what is happening with at least some of the people in this article), but some of this woo-woo stuff (anti-vaxxers) gets into the "yelling FIRE in a crowded movie theater" territory.

Especially in our weird, silo-ed social media era, crazy "cures" and "ailments" like this is publicly DANGEROUS.
posted by jeff-o-matic at 1:46 PM on July 17, 2016 [2 favorites]


science and logic and clear chains of causality are for their betters, and the poor crazies are only making themselves feel worse by looking for "answers". The right to know and understand is not one of the rights patients have.

I don't think it's as simple as that. I think it's that in many cases, the knowledge and understanding simply don't exist. And falsely believing that you've arrived at correct knowledge can be, and in this case probably is, actively harmful. Equally, aggressively pursuing answers with a method that cannot provide them, as in this case, can also cause harm. I think this is what Plasmon means by "The patients I've seen who are unable or unwilling to manage their illness in terms of symptoms, insisting on an exclusive focus on supposed root causes, have had a harder time coping with their suffering."
posted by biogeo at 1:53 PM on July 17, 2016 [6 favorites]


Adding to that: In the 20th century, people started reporting alien abduction and UFOs, just like they used to see angels and demons, benevolent or evil ghosts and spirits.

IMO, a lot of this is religious-type mania... prophets used to (and probably still do) wander the wilderness, isolate themselves and were given enlightenment through suffering and denial. Angels became friendly aliens, demons abducted you in their spacecraft and anally probed you.

Now we live in the information age, where so much of the world is pushed at us as good or evil, a "super-food" or a "toxin", we need to be cleansed, juice dieted, chemicals are killing us, vaccinations cause autism or worse. Gluten—from wheat which was farmed and made civilization possible—is evil. Not just celiac... Wheat-belly anyone? There's always gonna be people whose brains/personalities and bodies get swept up in the rapture du jour. No holy texts, just terabytes of false information and conspiracy at your fingertips.
posted by jeff-o-matic at 1:59 PM on July 17, 2016 [2 favorites]


A very long time ago, I went to an endocrinologist because I'd been diagnosed with hypothyroidism (Hashimoto's). And while my medication treated my numbers (and my numbers are great), I still felt like I had symptoms. Namely, weight gain that would not go away, no matter what I did. (Apparently, not unusual for women with Hashi's.)

The endo was completely dismissive. With nothing more than a sketch of my symptoms -- no blood tests, no ultrasounds -- he informed me I had PCOS; wrote it down in my history, and the diagnosis would follow me for a decade or more. He said I needed to diet and exercise. I told him I ate a 1300 calorie diet (I am 5'3") and I had a personal trainer. He gave me a skeptical look. Then he prescribed me metformin and sent me on my way.

Being a strong female character with a pretty good insurance policy, I fired his $35 copay ass and never went back. The metformin did nothing for me, so I stopped taking that. My weight loss continued to stall out at 150, despite all efforts ranging from heavy exercise and calorie watching, to letting my appetite and energy dictate what I did. I ultimately decided to be happy with my body as it was. Life went on.

About two years ago I was in with my OB because I was pregnant but miscarrying. He was doing a routine ultrasound to verify that the child I was carrying was unviable. I casually mentioned the PCOS diagnosis ("Maybe that's why?"), and he gave me a questioning look, then zoomed the ultrasound wand over to look at my ovaries.

"Nah," he said. "You don't have PCOS. The 'popcorn' pattern on the ovaries is the definitive symptom. Which you don't have. This miscarriage is probably just bad luck."

Basically, because of an asshole, dismissive physician, I've been walking around thinking my body was even more broken than it really was. And because of an awesome one (who didn't have to do what he did), I got to shake it clear.

So I get these people. And I feel for them. I went to "the expert" with a problem, and basically got called a liar. It drove me to look into alternative therapies and medicine, none of which worked, either, but at least no one told me it was all in my head.

There is a great power in someone reaching out to you and saying, "I believe you." That's what these people have found. I hope it has helped them find some measure of happiness.
posted by offalark at 2:05 PM on July 17, 2016 [24 favorites]


I think I know exactly one woman over 40 who has never been blown off with a psychiatric diagnosis from a medical doctor, and she has had the same doctor since she was a kid.

It's not just that there's a stigma surrounding mental illness. It's that a LOT of medical doctors will diagnose you with mental illness whenever you present with anything more subtle than a compound fracture.

Fortunately, nobody I know has died from it yet.

And I know or have been women who had MDs try to prescribe mood stabilizers for conditions including iron deficiency anemia, diverticulitis, and I think the thing that is wrong with Dr. House's leg on that show.

Two of the people I know have ended up in various alternative circles--not this one specifically but less extreme versions--primarily because those are the only places anyone actually listens to them. One, who has sometimes serious physical reactions to foods, has a fairly extreme elimination diet that many people find just hilarious. But I have watched her puff up and break into hives right after or during eating. There is obviously something wrong there, and she's on her own, just trying everything she can think of to narrow down what's doing that to her, but some people love to mock her for her restrictions. And I wouldn't be surprised if some of those people were sneaking stuff into her food.

Some of the things they're into bother me. They're both kind of poor, and I do think they're wasting money on some of the things they've done. But I'm not going to make fun of them for it. They both have some pretty serious health issues, and they've both been treated ignored and dismissed by the medical establishment. Maybe if I had a solution for them, I'd be in a better position to judge them, but I don't.

There are few terms that I hate more than 'woo.' It's not even an argument, it's just an inarticulate blow-off.
posted by ernielundquist at 2:08 PM on July 17, 2016 [18 favorites]


I feel for these people. As someone in my early 30's who literally aches all the time and is exhausted for no goddamn reason who ended up being prescribed lyrica for anxiety and seriously managed my pain (but I had to go off of it due to 50lbs weight gain with no signs of stopping). I've never been diagnosed with anything but shrugs and if it works it works. There isn't really anything out there for me, normal pain meds (tylenol, ibprofin) mess up my stomach up or does nothing but of course other pain meds are out of the question for addiction reasons and lack of long term success (please note I'm not complaining, I wouldn't take an opiate everyday even if somebody prescribed it to me) I may be eligible for medical marajuana but would loose my job if I tested positive anyway(PTSD dx). Seems to help some though.

I dont know why but I do wish there was some answer aside from hands wavy psychosomatic melodrama (I've had 15 years of therapy at this point and is not going away by talking thanks very much).

I'm exhausted and I hurt every day. I do want something that won't make me severely overweight (lyrica is awesome, but being severely overweight is just going to cause more pain in the long run) so I just suffer and do my best. I need to go back to my doctor but I'm so exhausted by not being believed (though my doctors were amazed by my improvement in fuctioning on lyrica) and hearing we just dont know it didn't even seem worth it to try again.

It is really a tough state to be in and to be mentally worn down by it all the time. I can see how easy it would be just to pick something and stick with out as the source of all of my troubles no matter how false it is.

Suffering is suffering and compassion goes a long way.
posted by AlexiaSky at 2:18 PM on July 17, 2016 [16 favorites]


"Snowflake was not easy to get to. I’d risen at dawn, vomited on a tiny six-passenger plane, and walked one mile down a busy highway in a town called Show Low (160 miles from Phoenix) to get to Susie’s car."

Oh for God's sake. It's half an hour from I-40 and maybe an hour from Petrified Forest NP.
posted by ROU_Xenophobe at 11:05 AM on July 17 [7 favorites +] [!]


When you're a British journalist traveling to the US for a story and one of the subjects of that story forbids you from sitting inside a rental car because her coming in contact with the residual fumes from that rental car would make her ill, I think you're allowed to at least note in your article that the logistics involved in getting to the subject were extravagant and inconvenient and caused vomiting.
posted by mudpuppie at 2:18 PM on July 17, 2016 [17 favorites]


I don't think it's as simple as that. I think it's that in many cases, the knowledge and understanding simply don't exist.

Right! I mean, right in the sense that that's what I personally think, not that I really know. But when you exhaust the medical establishment's ability to diagnose and treat you, you don't get told that they're sorry but they don't know what's wrong with you, frequently; you get told that you have a functional or psychosomatic or factitious disorder, depending on your luck. Or even, your doctor doesn't tell you that, but they tell the rest of your medical team that. Your belief that there is something else wrong with you that maybe hasn't been identified or understood properly - or your insistence that "psychosomatic" labels it but doesn't explain it, and you want an explanation -- is more evidence that you are too difficult to deal with.

I mean, the line of mine you quoted is a moderately uncharitable and impolitic paraphrase of a terrifyingly uncharitable sentiment that does get expressed by real doctors.

(Above I say "you" in the sense of "one," and for once I don't mean "I", thank god. I interviewed for a job once archiving papers for a woman who would have forbade me to use shampoos or soaps containing any of a long list of popular chemicals, although she lived a few thousand miles away from the work site, because she might in a few decades have some of these papers shipped to her and the dreadful sodium laureth sulfate miasma would cling to everything I touched for eternity and thereby sneak into her walled compound like a thief in the night and assault her sensitive membranes and also she made it seem like a real possibility she could smell my hair conditioner over the phone. I had no sympathy for this person, partly because of her planned treatment of her employees and partly because she was rich enough I thought she should have been able to afford a sense of proportion, which is classist in its own special way I am sure. So I am aware of how profoundly aggravating and irrational this sort of thing can be, but I still think the contempt and ridicule with which these aggravating people are treated and discussed makes it all worse.)
posted by queenofbithynia at 2:26 PM on July 17, 2016 [3 favorites]


But mental illness is a physical illness of the brain. An associated condition, anosognosia, is possibly a self-protective aspect of mental illness in which the person affected believes nothing is wrong with them. It's very common in disorders on the "delusional" spectrum.

I'm a therapist working primarily with people diagnosed with a variety of delusional disorders. I wouldn't place anosognosia as self-protective at all, personally. My experience with people who have delusions but can engage with reality testing and people who can't is that the former can lay to rest tormenting thoughts far more easily than the latter. Having known people in pain literally all the time, a lot of what I do includes validating (or at least not questioning) their delusions, but it makes helping them focus on positive things significantly harder, and decreases the amount of independence my clients have because while I am treating them, I am not teaching them how to treat themselves. Keep in mind, though, the effects of delusional disorders varies widely culturally, and delusions in the US are some of the most tormenting.

I should specify - I start with validation and exploration while tracking their expressions of suffering to see if discussing the topics increase or decrease their suffering. When it increases with no sign of decrease or insight, I shift to encouraging peaceful and positive thoughts and track the same thing. A lot of this is a judgement call, and I spend a certain amount of time re-assessing my judgement semi-regularly or when new symptoms show up. I usually can't include my clients in these metrics, or even in tracking much, due to the interpersonal dynamics and how that checking in can be interpreted as invalidating their beliefs, and thus damage our rapport.

As for whether these specific people have a mental illness - I'm not sure there's actually a way to determine that objectively. What we currently define as "mental illness" might be more easily described as "people we blame for not functioning well in our society" and the history of mental illness is one of leverage used against people to remove their rights, not any sort of assessment of functionality, safety, and lack-of-suffering.

People defined as "mentally ill" are also lightning rods for projections of societal ills, which further muddies the water, and they are targeted for persecution and predation which increases the likelihood they'll develop stress and trauma based symptoms which will get folded into their diagnosis. People also tend to hold people like my clients in contempt (as shown in this thread) and so say cruel things to them or dismiss them, which can become internalized or folded into their hallucinations (if they have them).

In addition, the medications we use to treat "mental illness" are poorly studied and even more poorly understood, every client is a single subject study with no control, and we don't actually understand the full effects of shifting dopamine, serotonin, and gaba via oral or intramuscular medications. In my experience, medications work for some people, don't with others, and never touch delusions. Delusions are best addressed via the emotional rather than rational system, and focusing too much on shared rationality means one misses their internal logic. I have also had clients where we assumed some symptoms must be mental illness and they were actually caused by over-prescription of medical medications; getting that fixed was hampered by their diagnosis for reasons many others have gone into in this thread.

It is entirely possible - even highly likely - that hyper-sensitivity to mass produced chemicals is a confluence of a lot of things, some of which are medical and others of which are psychological, but that it doesn't map onto any diagnosis of "mental illness". People without diagnoses experience nocebo and placebo effects all of the time; it only becomes mock-worthy when the person experiencing the symptoms is assumed to have a diagnosis of mental illness.
posted by Deoridhe at 3:14 PM on July 17, 2016 [22 favorites]


The belief that there must be something "really wrong" can be part of the problem. The patients I've seen who are unable or unwilling to manage their illness in terms of symptoms, insisting on an exclusive focus on supposed root causes, have had a harder time coping with their suffering.

As someone who lives with a chronic pain disability and whose husband has an autoimmune disorder, this resonates so hard. There is SO MUCH focus in the greater culture on "what caused this" and "how can you undo this." We both get by treating our symptoms. He is basically in remission due to his immunosuppresants. But we both get the "oh, you're taking so much poisonous medication and you're just treating symptoms." Yes, we are treating symptoms because that makes our lives better! I've done the research on my husband's condition (cause he didn't want to...emotional labor...) and, you know, he could eat lots of spinach and sunflower seeds like people recommend but he's still going to need his meds to stay out of the hospital.

When I look at things like this, I see a lot of magical thinking and delusional, or near-delusional thought processes. I see people with symptoms of personality disorders. And I see people who are taken in by people who promote these theories of disease. I understand wanting a cause and wanting a cure, but obviously these people are still suffering no matter what they do. I don't think encouraging them to avoid medical treatment is helping anyone.

As a note in favor of the importance of seeing medical professionals, I recently (as in a few days ago) went to a routine medical appointment where my doctor discovered I have hyperthyroidism. I don't have all the answers about why and when and such yet, but just reading the symptoms this explains SO MUCH about my entire life and symptoms I've always had or thought were just normal. I'm strongly starting to believe I've had this a long time, but it wasn't detectable until now. I'm really looking forward to getting treatment (which probably involves exposing myself to radiation) and maybe getting some things under control (like anxiety and insomnia) that I thought were just ME.
posted by threeturtles at 3:27 PM on July 17, 2016 [9 favorites]


I was studying this sort of thing this past Spring for a course on medical anthropology. Here's one of the links my professor sent to us: Mobile phones and brain cancer: 'no health risk' is not the same as 'safe'

It's worth noting that ABC actually apologized for airing this because it was basically pseudoscience and "breached journalistic guidelines." The scientific community was horrified by it. True, you can't prove a negative, but holding that in equal standing with all the evidence on the other side is not the right way to present science.
posted by olinerd at 4:12 PM on July 17, 2016 [6 favorites]


It's been suggested recently that Mary Lincoln's behavior as she got older was the result of pernicious anemia. In her times it was a common disease. Until 1920, average survival was one to three years.

That's the year George Whipple suggested raw liver as a treatment. It was not until 1948 that vitamin B12 was isolated. At B12 levels only slightly lower than normal, a range of symptoms such as fatigue, depression, and poor memory may be experienced. Eventually it can cause severe damage to the brain and nervous system. Sometimes victims' bodies are *incapable* of B12 uptake because their stomachs lack 'intrinsic factor'.

NO DOUBT many people in the 19th century were accused of faking, exaggerating, or imagining the symptoms of their deadly disease. Shameful.

When do we learn?
posted by Twang at 4:15 PM on July 17, 2016 [3 favorites]


I don't doubt these people are suffering, at all. And as a migraine sufferer, I think a lot of the temptation to blame causes like "wifi!" is because the medical system demands that you do your own study on yourself. Medical providers don't have time to put you into a carefully controlled study of diet and environment and sleep and stress and whatever to figure out the problem, so we're left to do it ourselves. I've figured out over time that my migraine triggers used to be PMS, came randomly with new neurological symptoms during my pregnancy, but most of the time now are a result of inconsistent sleep patterns. No doctor has ever helped me figure this out beyond shrugging and saying "yeah, sure, sounds legit." And I'm not in a position to do any real controlled tests on myself, nor do I want to intentionally trigger a migraine just to see if I'm right because oh god they're awful. I'm an engineer with a bit of scientific training so I know roughly how to design an experiment and record data and draw some conclusions, but by no means is it a clinical study for root cause diagnosis. And this sort of thing is encouraged all the time with allergies/intolerances ("well, keep a food diary and see if you notice any patterns").

So I can totally see how other people, offered no explanation for their symptoms, start doing a similar thing but for whatever reason aren't able to design their own experiments rigorously enough to cancel out factors like diet or stress or sleep or whatever else, and start to look at what IS glaringly common from day to day, and start to identify things like radio signals or wind turbines or chemicals. I am 100% on the side of "this is not actually causing it", but I get how they reach that conclusion. Whether it's placebo effect from being away from wind turbines, or a reduction in stress and anxiety because they aren't being hammered with work email 24/7 since they no longer have wifi (or a job that requires that), or whatever it is, if it works for them and they're not harming anyone else, I can't really fault them.

But agreed, once they start trying to take wifi out of schools and scaremongering that we're all going to die because of wind turbines, my patience runs really thin really fast. I do feel that if they want accommodation in mainstream society for a disability like this, and those accommodations have negative impacts on society, I need more evidence of actual causation to accept that.

But everyone needs to stop wearing fragrances. I don't have an allergy or sensitivity, I just hate them all.
posted by olinerd at 4:29 PM on July 17, 2016 [8 favorites]




(The other thing about the NTP results - besides that elevated risks were only seen in male rats - was that the test group lived significantly longer than the controls overall. So there's a little weirdness there. But that's one part of a series of studies that will be finished next year I believe.)
posted by atoxyl at 4:44 PM on July 17, 2016


So the thing that immediately sprang to mind on reading this is "phantom pain" that some people get when they are amputees. Like everyone else, I am sure they are suffering, and chronic pain is debilitating. If your brain registers that the things around you are harmful to you, couldn't it evolute to create symptoms? Sensitivity to light, fragrance, whatever it is that is making them sick- the body tries to heal itself or warn you of badness so you do something about it. My poorly made point is that things can cause sickness because they are making your body react as if it is in crisis. So the symptoms are real, but the cause is both mental and physiological.
posted by LuckyMonkey21 at 5:12 PM on July 17, 2016


I don't think I'd want to live there, but a nice visit sounds like it'd be great. I'm sensitive t most artificial fragrances, a lot of chemicals, different kinds of smoke and fumes,etc. - things that people get really crazy-hostile and deliberately use more of if you politely explain that they're making you sick and ask them to use less or wait to use them until after you've gone.It'd be nice to go,say, two or three whole weeks without an environmentally-induced migraine.
posted by The Underpants Monster at 5:53 PM on July 17, 2016 [1 favorite]


Twang: "NO DOUBT many people in the 19th century were accused of faking, exaggerating, or imagining the symptoms of their deadly disease. Shameful.

When do we learn?
"

That is Mrs. Lincoln were to have listened to Dr. Beard
In 1869, doctor George Beard published several papers blaming modern civilization and steam power for ailments such as “drowsiness, cerebral irritation, pain, pressure and heaviness in the head”.
and avoided steam engines she wouldn't have gotten any better.
posted by Mitheral at 5:56 PM on July 17, 2016 [7 favorites]


I dunno. For me personally, I did use to be able to tell when someone handled plastics without washing their hands. The dusty gritty feeling plastic especially, the kind some DVDs and a lot of newspapers used to be wrapped in. I'd shake their hands and the gap between finger and thumb would swell and itch terribly. I used not to be able to handle newsprint either.

It's better these days, but an experience like that and how I was meant to be making it up -- like the rental car example. It's that specific smell, and yeah, they couldn't touch me and I wouldn't hug them because breathing it that close made the whole inside of my face itch and I'd start slurring like I'd had ten beers, completely against my will, I'd try to be coherent and the words had to be dragged out a syllable at a time if I could make it that far.

It was a really scary time and I have so much sympathy for these people. It's terrifying to feel stuff like that happen and confront the idea that maybe it wouldn't ever stop.

I'd have moved to a place like this in the worst of it, purely because they would believe me enough that it wasn't funny. Being funny was ... awful. It all hurt and it was scary, absolutely, but being funny was so, so lonely. I get it.
posted by E. Whitehall at 6:15 PM on July 17, 2016 [3 favorites]


A very long time ago, I went to an endocrinologist because I'd been diagnosed with hypothyroidism (Hashimoto's). And while my medication treated my numbers (and my numbers are great), I still felt like I had symptoms....The endo was completely dismissive.

I signed up and paid my $5 just to favorite the hell out of this comment. I struggled with undiagnosed hypo for years but because my doctors couldn't point to a blood test that showed it, therefore I must not have it (despite having every symptom on the thyroid list). Any doctor who suggested anti-depression meds (the only thing that depressed me was having stupid doctors) got summarily dumped. Yes, I finally had to go to a holistic doctor and put up with some of the woo just to get a decent dose of natural thyroid that would address my symptoms not my blood tests. And I'm doing very well with just that and no anti-depression meds, thankyouverymuch. Point being, you can be what seems to yourself to be rational and scientific up to a point, but have to recognize that sometimes the science just isn't there yet, or it is outright wrong.
posted by Preserver at 6:20 PM on July 17, 2016 [5 favorites]


things that people get really crazy-hostile and deliberately use more of if you politely explain that they're making you sick and ask them to use less or wait to use them until after you've gone

This response is very common, even to things we know are life-threatening, like allergies. There is this impulse to prove other people are wrong about their lives which is really interesting, because the unspoken part of it is that the person trying to prove others could be wrong are absolutely certain they are not. I've been fighting it a lot in myself, ironically because it's not terribly scientific, although people often use the language of science in their dismissal of others' lived reality and doctors are more guilty of this than most (despite the science of health being incredibly weak and often counter-intuitive).
posted by Deoridhe at 6:38 PM on July 17, 2016 [8 favorites]


... it only becomes mock-worthy when the person experiencing the symptoms is assumed to have a diagnosis of mental illness.

If anything, I think this thread is proving the opposite: magical world views are totally acceptable when one is mentally ill, because rationality is something that can only be expected of neurotypicals.

I'm really uncomfortable with the rush to defend the people described in this story as mentally ill, because I feel like it's begging a lot of questions. It's possible some of these people suffer from undiagnosed mental illnesses. It's also possible that they don't. Christian Science (to pick on one random religion) has some absolutely ridiculous, definitely harmful beliefs, but that doesn't make its practitioners by definition mentally ill. Plenty of non-Western cultures believe that illnesses can be caused by supernatural forces, yet those people aren't all mentally ill.

(Not to mention, mental illness, in the broadest sense, is not, in itself, a reason to sympathize with a person's irrational beliefs. Just because a person is depressed or has ADHD does not mean that they shouldn't be able to understand that Obama is not a lizard person. Equating "ridiculous beliefs" with "mental illness" does no one any favors, and then defending said beliefs on the basis of mental illness is condescending as all hell to those of us who aren't neurotypical yet strive to maintain a rational worldview.)

That said, if I'm guessing right about the anti-epileptic / antidepressant medication the woman in the story is taking, it does cause increased skin sensitivity towards a lot of chemicals.
posted by steady-state strawberry at 7:00 PM on July 17, 2016 [2 favorites]


I swear one of my co-workers wears a perfume that smells like bug spray.

Yes! That's the class of scents called "florals." They don't bother Mrs. Wallflower but I refer to them as Insecticide Perfumes.


What you really need to look out for is Big Token Ring.

ARCNET 4 EVA
posted by Johnny Wallflower at 8:06 PM on July 17, 2016 [1 favorite]


I had a friend in high school who has gone through battery of tests from world renowed physicians for years, and years, has severe symptoms, but there is nothing that matches a diagnosis for her. She actually died and came back to life once. She looks 'fine' but was so miserable all the time. She works an admin job now, and you wouldn't know anything about her story if she didn't share it. Stigma kills people in a room that you would have never known to have it.

There are so many people amongst us who walk with these invisible chronic illnesses that really are not within the current realm of knowledge for treating them, simply because we are not advanced enough to know how to treat them. I think it is stupid and horrible that so many people have stigma against them, because if anything, it puts the blame on the individual, instead of acknowledging the real fear that there are many things in the world that we do not yet know how to solve and control for. Y'all are being so harsh, where is your humanity? These people are just trying to feel more human.
posted by yueliang at 8:14 PM on July 17, 2016 [3 favorites]


I think we should keep in mind that not all brain disease has a psychological etiology from thinking "bad thoughts" or whatever. Misfiring neurons sending phantom pain signals is a physical problem. The patient's interpretation of that problem may be strongly driven by the stigmatization of mental health issues and the continuing Western attitude of mind-body dualism. "I'm not crazy!" is a common refrain. They're actually feeling their symptoms, not imagining them. If medicine and culture framed it nonjudgmentally as an organic disorder of the central nervous system, would there still be a need to grasp at the straws of "toxins in the environment" to explain it?

Functional Abdominal Pain Syndrome (yep, FAPS!) is a diagnosis offered to (usually) women who suffer from chronic abdominal pain without any obvious organic cause. It does not seem shocking to me, at all, that mental health could play a role in perception of pain. Stress is a physical phenomenon. My migraines can be triggered by stress! So that the idea that FAPS could arise, at least commonly, from mental distress doesn't strike me as at all delegitimizing of these patients' pain; it just suggests that perhaps different modes of treatment would be most helpful. But the articles on FAPS...geez, the contempt and condescension towards these poor women just trying to work out why they're feeling relentless pain is appalling. Clearly, for many doctors, that the underlying cause might be mental is sufficient grounds to dismiss these women altogether. And it's well-established that women are routinely undertreated for undeniable physical pain (as are minorities). Given these circumstances, it's hardly surprising that some people in distress have turned away from the medical establishment altogether.

I admit a certain impatience with the Snowflake residents of the world, but it's impossible to deny that (a) they are in sincere distress and (b) the medical establishment as a whole doesn't even rise to the level of good faith in attempting to help them. Until we can at least treat them with kindness and sincerity, one can't be too hard on them.
posted by praemunire at 8:21 PM on July 17, 2016 [7 favorites]


To clarify some of my statements above: I believe mental illness is a continuum. Based on my experiences working with severely mentally ill people I found that the typical thought processes and experiences of people with definite mental health diagnoses weren't totally alien to normal brain function, but usually just a severe exaggeration. They are at the extreme end of the continuum on, say, paranoia, or delusion. But so-called "normal" people often exhibit the same basic kinds of beliefs and thoughts but just not to an extreme that we would label harmful or delusional.

So when I say that I see some delusional style thinking and magical thinking in these people, I'm not necessarily calling them mentally ill, but I'm saying in this case their logic processes are similar to people with mental illness. But there are lots of examples of this kind of thing (often with religion) in people with no symptoms of mental illness.

I do think this kind of magical thinking is dangerous to long-term mental well-being as it can spiral out of control, especially when you're only surrounded by people who reinforce your beliefs. (See Eyebrows McGee's example above.) I have sympathy for these people and their frustration with the medical establishment. Seriously, as a chronically ill person I really, really do. But I think it's harmful to validate any random thing someone believes about their health. My example of hyperthyroidism above was an attempt to say that I think frequently there ARE real, medically understood reasons for things but diagnosis is really difficult and that rejecting all traditional medicine is only going to ensure the real underlying problem isn't ever found.
posted by threeturtles at 12:14 PM on July 18, 2016 [2 favorites]


So...I kinda feel bad that I got the first comment in here and it was just a pithy little aside and it got so many favorites and I'm afraid it set the wrong tone for the discussion. I was chuckling at the comedic coincidence of a bunch of folks with very complicated health issues, reminiscent of so many AskMeFi questions (some of which I have posted myself) that invoke the phrase "snowflake details bell the fold". I wasn't laughing at these people nor did I intend to dismiss their struggles with my little quip.

While I don't have anyone in my life with these specific challenges I can certainly empathize with the difficulty and stress of dealing with unexplained pain and Doctors who don't listen to you. I feel for these people and I truly hope they find resolution.
posted by Doleful Creature at 8:15 AM on July 21, 2016 [1 favorite]


I keep thinking of the Radium Girls.
posted by The Underpants Monster at 2:05 PM on July 21, 2016


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