Bodies in Protest. Steve Kroll-Smith

does exist to conclude that chemical sensitivity [is] a serious health and environmental problem and that public and private sector action is warranted at both the state and federal levels” (Ashford and Miller 1991, v). For others, however,

      a great deal more research is needed before there will even be a consensus on a definition of chemical hypersensitivity. It is premature to classify CHS [chemical hypersusceptibility] as a purely environmental problem.… Health related environmental standards are based on normally accepted exposure units. They do not take into account individuals who may be sensitive to chemicals at limits far below the norm, perhaps at undetectable limits given current technology. (Maryland Department of Environment, letter to Governor Donald Schaefer, in Bascom 1989)

      In striking contrast to the difficulty of the biomedical research community in reaching agreement on the meaning of MCS, the clinical medical profession speaks with one voice in rejecting the legitimacy of this proposed disorder. From its perspective, MCS is a fugitive, hopefully transitory, concoction of beliefs with no rightful claim to legitimacy.

      Local medical boards reportedly threaten to censure physicians who diagnose people with MCS (Hileman 1991, 27–28). National medical societies, including the American Academy of Allergy and Immunology (1989), the American College of Occupational Medicine (1990), and the American College of Physicians (1989) officially deny the reality of MCS as a physical disorder and caution physicians not to treat patients “as if” the disease existed. The executive committee of the American Academy of Allergy and Immunology could be said to speak for the other professional medical societies in its position statement on MCS:

      The environment is very important in the lives of every human being [sic]. Environmental factors, such as chemicals and pollutants, have been demonstrated to influence health. The idea that the environment is responsible for a multitude of human health problems is most appealing. However, to present such ideas as facts, conclusions, or even likely mechanisms without adequate support, is poor medical practice. The theoretical basis for ecologic illness in the present context has not been established as factual, nor is there satisfactory evidence to support the actual existence of … maladaptation. (quoted in DeHart 1995, 36)

      The California Medical Association reported that “scientific and clinical evidence to support the diagnosis of environmental illness is lacking” (1986, 239). The report went on to argue that evidence supporting the existence of a low-level chemical etiology to such health problems is based on hearsay and anecdote, not controlled clinical trials (243). A study published in the New England Journal of Medicine found the clinical testing for MCS to be seriously flawed and the typical environmentally ill patient to be unusually stressed and personally unhappy (Jewett, Fein, and Greenberg 1990). In a report prepared for the State of Maryland, a health policy analyst summarized the hostility of the medical profession toward a biomedical interpretation of EI, observing that the “controversy surrounding the chemical hypersensitivity syndrome begins with a debate as to its very legitimacy as a distinct entity” (Bascom 1989, 8).

      Results from a survey of physician members of the Association of Occupational and Environmental Clinics—the one medical society most likely to be sensitive to people who claim they are suffering from MCS—are also worth considering. First, the survey found that only 9 percent of the physician population believe EI is predominantly physical in origin. Sixty-four percent, on the other hand, believe it to be a psychological disorder (Rest 1995, 61). With this bias toward a psychogenesis model of MCS, we should not be surprised to learn that occupational physicians were more likely to consult psychiatrists and psychologists when treating a patient who theorized his misfortune as MCS (63). Similarly, 64 percent of the occupational physicians reported referring people who claim to be chemically reactive to psychologists or psychiatrists. Fifteen percent did so “always,” while 49 percent did so “at least half the time” (65).

      A report in the Annals of Internal Medicine labeled people claiming to suffer from MCS a “cult” (Kahn and Letz 1989, 105).⁴ Adding insult to injury, an allergist reports that he can reduce the symptoms of the disorder by “deprogramming” patients who internalize “environmental illness beliefs” (Selner 1988). A psychiatrist writes: “In the absence of objectively verified abnormalities detected in physical examination, the illness is subjective only.… Multiple Chemical Sensitivity constitutes a belief, not a disease” (Brodsky 1984, 742). A study of twenty-three people who identified themselves as environmentally ill found fifteen of them suffering from a mood, anxiety, or somatoform disorder (Black, Rathe, and Goldstein 1990). The authors of this study, published in the Journal of the American Medical Association, conclude that all people with EI “may have one or more commonly recognized psychiatric disorders that could explain some or all of their symptoms” (3166).

      Finally, Gregory Simon, another psychiatrist and coauthor of a well-known article on MCS, “Allergic to Life: Psychological Factors in Environmental Illness” (Simon, Katon, and Sparks 1990), argues that MCS is simply a product of faulty reasoning. Recalling the classic anthropological question, “Can ‘primitive’ people distinguish fact from fancy or do they muck around in a hodgepodge of spirits, sprites, myths, and legends?” Simon and colleagues label the environmentally ill victims of, simply put, bad reasoning. Like Lévy-Bruhl’s primitive, they cannot discern what is real from what is imaginary. Thus for some experts MCS is a result of behavioral sensitization. People associate a smell or taste with a physical symptom, in spite of the fact that there is no clinical relationship between the two. For others, MCS is a consequence of a tendency to react unreasonably to physical symptoms such as a sore throat or a rash. Investing too much attention in these symptoms, they search for causes and find them in the local environment. Finally, for still others MCS is a result of a faulty mode of reasoning perhaps best called “displacement confusion.” Here a person avoids thinking about the “real” causes of physical distress, unhealthy lifestyles, excessive stress, and so on, and focuses instead on modern culture’s overconcern with the environmental causes of disease (Simon, Katon, and Sparks 1990; see also Simon 1995, 45).

      What are we to make of this confusing array of biological and psychological accounts of EI? Those in the medical research community are more sympathetic than their counterparts in clinical medicine to the idea that MCS is a legitimate medical disorder. But research on MCS is just beginning. Indeed, as we write this book, there is not even a commonly accepted case definition of the problem. Thus medical researchers are still debating the essential question: What is it? The clinical medical community appears to be ahead of its research colleagues, at least in knowing what MCS is not. It is not a legitimate physical disorder. While there is some confusion over what MCS might be—a belief, a cult, a psychiatric disorder, or a process of faulty reasoning—it is not recognized as a physical disease by the medical profession.

      Thus, what happens when a person who has been closely monitoring his body, matching symptoms with environments, and organizing his local world to make some sense of his distress visits a physician trained to look beyond a patient’s account and examine the body as the source of disease?

       Doctors, Patients, and Paradigm Disputes

      When physicians receive patients’ complaints, it is their professional responsibility to translate them into a language that is created and controlled by the normal science model of medicine. Although they use the most sophisticated medical technology and are guided by the cultural authority of biomedicine to “define and evaluate their patients’ condition” (Starr 1982, 16), most physicians who treat the environmentally ill fail to heal them.

      Imagine the physician presented with a patient such as Howard, complaining of nasal obstruction, sinus discomfort, chest pain, flushing hives, itching eyes, loss of visual acuity, fatigue and insomnia, genital itch, and nausea. Imagine that no accepted tests of organ system function can explain the symptoms. Imagine also that the patient is nonreactive to any conventional treatment plan the physician prescribes. The complaints persist. Finally, imagine that the patient has a theory that explains the origins of the symptoms, but that such a theory does not correspond to any of the accepted etiologies within the biomedical model. It is not unreasonable to assume that patient and physician will tire of this cycle of frustration. The physician might suggest another doctor,