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ILLUSTRATION BY KATHERINE STREETER
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making ourselves sick BY DAVID FUTRELLE | can modern life actually make you sick? Neurologist George Beard thought so. Chronicling the spread of "nervous disease" in his book "American Nervousness," he argued that the stresses of modernity could lead to a veritable laundry list of symptoms, some 70 in all, from migraine headaches to skin rash, asthma, digestive disorders, insomnia, epilepsy and even complete nervous collapse. The cause of this debilitating malaise? Beard had a specific set of villains in mind: "steam power, the periodical press, the telegraph, the sciences, and the mental activity of women." "American Nervousness," you see, was written in 1881. Neurasthenia -- as the nervousness Beard studied was called -- was epidemic in turn-of-the-century America, especially among the cultural and political elite, some of whom took a certain pride in being diagnosed with this trendy side-effect of "overcivilization." Researchers were never able to find an actual physical cause for the disorder (much less a cure), and historians today tend to dismiss the epidemic as little more than an outbreak of high Victorian hysteria. Now, a century later, we seem to be facing the return of a new kind of neurasthenia. Hundreds of thousands -- even millions -- of Americans are coming to their doctors with long lists of seemingly inexplicable symptoms: chronic fatigue, muscle aches, severe headaches, stomach troubles, allergic rashes, "brain fog" and worse. Some claim to be virtually "allergic to the 20th century," in journalist Peter Radetsky's memorable phrase. Many conventional doctors, unable to find physical evidence of disease, have tended to dismiss the complaints as hypochondria; others, suspecting depression or some other psychiatric disorder, have tried to gently prod their patients to see a psychiatrist. But a growing number of physicians -- often defying the conventional wisdom found in government reports and American Medical Association position papers -- believe these present-day neurasthenics are in fact suffering from mysterious new ailments with names like Chronic Fatigue Syndrome, Gulf War Syndrome and Multiple Chemical Sensitivity (often shortened to CFS, GWS and MCS respectively). And although these "syndromes," like old-fashioned neurasthenia, don't have clear causes or cures, many of their alleged victims have seized their new diagnoses with a strange fervor: Here at last they have found someone who believes there is "really" something wrong with them, who doesn't dismiss their complaints as malingering. A full-scale war -- nasty, brutish and interminable -- has broken out between syndrome skeptics and true believers. The skeptics brand alleged victims as hysterics and sympathetic doctors as charlatans or cranks. "The mechanisms proposed [to explain Multiple Chemical Sensitivity] don't make sense," Dr. Stephen Barrett, author of an American Council on Science and Health report on environmental illness, told Newsday. "These physicians fill a psychological need by validating a patient's view of the world as a hostile place filled with harmful chemicals and contaminated foods. They offer a welcomed alternative to those who have little confidence in mainstream medicine." Others are even blunter: Donald Black, a psychiatrist at the University of Iowa College of Medicine, told Radetsky he's seen lives "ruined" by false diagnoses of MCS. "Once these people are taken in with this concept, and embraced by the 'chemically ill' community, it's almost like a cult," he contends. On the other side, true believers accuse skeptics of everything from simple insensitivity to collusion in nefarious government cover-ups of The Truth. "We humans are all participating in a giant 'lab experiment' against our knowledge and against our will, and it's making some of us VERY sick," Jacki Barineau writes on a Web page devoted to MCS. In her 1996 book, "Osler's Web," journalist and CFS victim Hillary Johnson accused the government of treating a deadly epidemic with evasions and denial. Meanwhile, many Gulf War veterans, convinced their service has left them very, very sick, greet each new government report on the subject with cries of cover-up. At this point, both sides have given up trying to win over their ideological foes, contenting themselves with simply hurling forth mixtures of facts, "facts" and sheer invective in so-far futile attempts to pummel the other side into submission. Two recent books -- one by a skeptic, the other by a journalist-turned-victims'-advocate -- are symptomatic of the current stalemate. Radetsky's "Allergic to the Twentieth Century" attempts to make a case for the most controversial of all the new diagnoses, Multiple Chemical Sensitivity, but he manages to portray most of his intended heroes as hypochondriacs and cranks. Elaine Showalter's "Hystories" suggests that two of the most prominent mysterious illnesses -- Chronic Fatigue Syndrome and Gulf War Syndrome -- are little more than modern forms of hysteria, but her own tone borders on hysteria at times. While both books manage to advance the debate somewhat, they do so largely in spite of themselves. "Hystories," for all its flaws, is the more persuasive of the two. Showalter, a Princeton University English professor turned amateur medical historian, dismisses CFS and GWS as figments of the popular imagination, hysterical disorders for our postmodern age, on a par with beliefs in alien abduction and Satanic Ritual Abuse, which she also writes about in detail. While the rain forests may have become "hot zones" for the creation of sinister new viruses, Showalter argues, "The United States has become the hot zone of psychogenic diseases, new and mutating forms of hysteria amplified by modern communications and fin de siècle anxiety. Contemporary hysterical patients blame external sources -- a virus, sexual molestation, chemical warfare, satanic conspiracy, alien infiltration -- for psychic problems. A century after Freud, many people still reject psychological explanations for symptoms; they believe psychosomatic disorders are illegitimate and search for physical evidence that firmly places cause and cure outside the self." These outbreaks of hysteria are only worsened by the too-credulous attention paid to them by the mass media. "Infectious diseases spread by ecological change, modern technology, urbanization, jet travel, and human interaction," Showalter argues. "Infectious epidemics of hysteria spread by stories circulated through self-help books, articles in newspapers and magazines, TV talk shows and series, films, the Internet, and even literary criticism." Showalter's book has, predictably, enraged Chronic Fatigue sufferers and Gulf War veterans -- and some of her public appearances for the book have been disrupted by small coteries of Chronically Fatigued activists who've managed to work up enough energy to launch a protest. It's not hard to understand their anger. Showalter's rhetoric is unnecessarily blunt and often irritatingly glib; in dismissing the "reality" of these new syndromes, she seems rather blithely indifferent to the extensive medical literature that's grown up around them -- not all of which suggests that the disorders are merely hysterical. Radetsky's book is a different sort of beast entirely. While Showalter tries to convince with high rhetorical flourishes, Radetsky hopes to win over his readers by the sheer accumulation of anecdotes. His strategy is not exactly a success. A contributing editor for Discover magazine, Radetsky argues that Multiple Chemical Sensitivity represents "a new kind of disease" -- and a harbinger of the environmental catastrophe that will face the rest of us if we don't protect ourselves and our environment from levels of chemical exposure we now believe to be "safe." For the sufferers of MCS, Radetsky says, even the smallest exposure to chemicals can wreak enormous havoc -- and so they have to go to extremes to assure their safety, carefully shielding themselves from everything from pesticides to perfume. MCS sufferers, Radetsky's case studies suggest, are forced to live at arm's length from the world, enduring meager existences transformed by a drastically "heightened sensitivity to substances in the environment that most of us take for granted, a heightened sensitivity almost always prompted by exposure to the commonplace products of modern living." MCS experts -- insofar as anyone can be an expert on something so nebulous -- argue that the body can only take so many toxins and that, once it becomes overloaded, even small amounts of exposure can trigger extreme reactions. This notion -- known as the "total load" theory -- bears little resemblance to conventional understandings of allergies or toxins, and so conventional doctors are quick to dismiss "total load" as, well, a total load. Radetsky evidently sees himself as an advocate for the chemically sensitive, but he's picked a difficult group to champion. The MCS victims he writes about often come across as prickly, doctor-hopping hypochondriacs with a penchant for melodrama and martyrdom. There are as many versions of MCS as there are MCS sufferers; each one seems to react to a different set of chemicals. Some can't go inside; others can't go outside. Some get sick from the smell of plastic; others shroud themselves with the stuff. There's no hard evidence they're suffering from anything organic, and their symptoms seem so plainly symbolic of deeply rooted psychological problems that it's hard not to conclude they'd benefit from a few sessions with a shrink. That is, if they could stand to be in the same room with someone who hadn't been buffed clean of all traces of better living through chemistry. MCS victims hide inside (or behind) their houses, the world kept at bay with a succession of signs: "Caution: Strong Chemicals Can Be Life-Threatening To Resident," one sign outside of an MCS victim's house reads. "Do Not Come Into The House If You're Wearing Perfume, Hair Spray, Deodorant, Dry-Cleaned Clothes," warns another. One woman, who built a $13,500 porcelain-lined "safe room" at the back of her rural Texas home, found that even this expensive bubble didn't offer her the protection she needed -- and so she resorts to sleeping on the back porch, regardless of weather, her iron bed frame sandblasted to remove its deadly paint. Once in a while, she allows herself to read a library book -- but only if she's able to air it out for a week to "let the chemicals outgas." If she doesn't have time for this precaution, she has a sheet of plexiglas she can put over the pages. Apparently eager to lend a certain religious sanction to their sense of martyrdom, she and some other MCS victims have started their own church. "It's called the Jeremiah Project," she told Radetsky, "because the prophet Jeremiah endured many hardships." And when she's not comparing herself with prophets, she's measuring herself up against the hardy pioneers of the last century "I have great respect for the pioneers," she explained. "Of course, many times they weren't ill." Wimps! Just north of San Francisco, curious tourists can visit Ecology House, an apartment building specially designed for the chemically sensitive, carefully constructed from safe materials like metal and porcelain and a special, additive-free cement. (Wood is a no-no for MCS sufferers: It releases too many gases.) The 11-unit building imposes an extensive list of restrictions to prevent contamination from outside: no pets, no perfumes or after-shaves, no scented shampoos. And of course, no smoking. Still these precautions proved less than adequate for the building's chemically sensitive residents -- who turned out to be even more sensitive than the builders anticipated. From the beginning, residents complained of foul odors and worse. "I really don't spend much time here," one resident told the Los Angeles Times. "Something is coming out of the walls." One woman Radetsky spoke to covered her walls from floor to ceiling with plastic; another regularly wore an oxygen mask inside her apartment. One man, who wouldn't give Radetsky his real name, was planning to build a metal garden shed inside his apartment to protect him from the "glue-like smell" that (he said) permeated his room. In the meantime, he spends his nights curled up in a fetal position on the floor of his bathwomb -- er, bathroom. If many MCS victims seem a tad eccentric (as even Radetsky is inclined to admit), their would-be healers often come across as quacks out to reinforce their patients' worst fears. The various medical explanations for the syndrome, such as they are, contradict each other, and none of them make much sense. Many experiments said to offer "evidence" of the disorder's validity are, critics contend, conducted without proper controls, and as such offer only unreliable anecdotal evidence for the theories they purport to prove. Critics charge that they only demonstrate the power of suggestion: When patients are told something will make them ill, it does; when they're told something else will make them better, it does. California physician Don Jewett was an MCS convert -- until he decided to conduct a double-blind experiment with a number of patients, giving some shots containing chemical and food extracts and giving the others placebos. Their reactions were the same; the "successes" he'd had with patients reflected nothing more than the placebo effect. The treatments offered by the "clinical ecologists" Radetsky consults are reminiscent of the rest cures 19th century doctors prescribed to neurasthenic women. Dallas doctor Bill Rea "sweats" the toxins out of his patients with a special "safe" sauna. And, if his patients have the time (and the money), he puts them in a porcelain-lined Environmental Control Unit. "The unit receives its own filtered water and filtered air," Radetsky writes. "Each room's TV set is encased in a glass-front cabinet. All clothing, bedding and towels are made of cotton, silk, or linen. Meals are prepared in stainless steel or glass cookware and served in stainless steel and glass containers with stainless steel utensils. Food is organic, water comes from springs and is bottled in glass." Nurse -- peel me an organic grape! Given the circumstances, it's no wonder that the American Medical Association Council on Scientific Affairs has refused to give MCS legitimacy as a diagnosis. "No scientific evidence supports the contention that [MCS] is a significant cause of disease or that the diagnostic tests and the treatments used have any therapeutic value," the Council has written. "Multiple chemical sensitivity should not be considered a recognized clinical syndrome." Should we dismiss Chronic Fatigue Syndrome and Gulf War Syndrome as hysteria as well? Showalter considers it practically our duty to do so. Any "temporizing" in the face of these grave "psychogenic epidemics" will only encourage other suggestible patients to seek out, and then to hysterically create, the psychosomatic symptoms of these imaginary disorders, she argues. Skeptic though I am, this seems a bit much. Although MCS seems at best a dubious diagnosis, there is a good deal of evidence that something beyond the power of the human imagination is at work behind many cases of Chronic Fatigue. It is also abundantly clear that American soldiers were exposed to a succession of noxious fumes and dangerous chemicals during their tours in the Gulf -- although it seems likely that what we now call Gulf War Syndrome will turn out to be a number of discrete ailments related to specific chemical exposures, rather than the more all-encompassing syndromes favored by the conspiracy-minded. Still, Showalter has a point. Many of those who earnestly believe they have one of these new syndromes are probably suffering from clinical depression -- an insidiously sneaky malady known to bring on not only sadness but profound bodily malaise, foggy thinking and numbing fatigue. (Many of the Chronically Fatigued respond well to Prozac -- and though that in itself is not proof that their ailment was "really" depression, it is suggestive nonetheless.) And, regardless of whether or not there's any organic cause for their misery, many others are likely suffering from some kind of hysteria. When several Gulf War veterans told Esquire writer Gregory Jaynes that their "sweat smells worse than it used to" and that Gulf War Syndrome had made them shrink in height, it's hard not to see an overactive imagination at work. That's not to say the disease was, or is, "all in their heads." Human beings have a tremendous ability to "somaticize" their psychic troubles into bodily woes, transforming anger, sadness and anxiety into everything from paralysis to agonizing headaches. These symptoms -- as Showalter makes a point of acknowledging -- are all too real, and our refusal to see them as such reflects our culture's deep-seated fear of the psychological insights first developed nearly a century ago by Freud. Our culture, as Showalter argues quite cogently, "still looks down on psychogenic illness ... does not recognize or respect its reality." Hence our frenzied search for chemical or bacteriological causes for our woes. Hence the anger the syndrome sufferers feel when their doctors suggest -- all too reasonably -- that they might well be better off seeing a psychiatrist. "The culture forces people to deny the psychological, circumstantial, or emotional sources of their symptoms and to insist they must be biological and beyond their control in order for them to see themselves as legitimately ill," Showalter writes. We're all hysterics, to a degree; we've all felt the seductive pull of hypochondria from time to time. Perhaps from this shared experience can come a shared empathy. "If we can begin to understand, accept, pity, and forgive ourselves for the psychological dynamics of hysteria," Showalter concludes, "perhaps we can begin to work together to ... avert the coming hysterical plague."
She's right. It's a pity that those who could gain the most from Showalter's concluding words will probably never read enough of her book to see the moral vision behind her anger. All they'll see is her anger, her dismissal -- and they'll dismiss her in turn, as they've dismissed all those doctors who haven't given them the diagnosis they're sure they deserve.
David Futrelle, a regular contributor to Salon, is something of a hypochondriac. ILLUSTRATION BY KATHERINE STREETER |
