by Genese Sodikoff
One does not normally think about infection, illness, and recovery in terms of a three-staged “rite of passage” as European ethnographer Arnold van Gennep defined it, although catching a disease certainly involves a period of physical transition and disruption of our sense of self.
Of course, a “rite of passage” conventionally refers to a ceremony that marks a change in status, such as a wedding or commencement, where one social identity is shed and another assumed. Van Gennep's three stages include the separation from peers, a liminal or in-between period, and reassimilation into society with a new status. But if we loosely apply this concept to other life experiences, such as illness, we begin to see a structure to the stories that make up our lives.
Say an individual goes from healthy person, to ill patient, and finally to some resolution. At this point the individual has either returned to the prior state of healthiness, dies, remains somehow marked by the period of suffering, or persists in a state of impaired health, neither here nor there. Certain diseases seem to occupy the liminal space, casting their victims into medical limbo as neither diagnosable nor well. Chronic Lyme disease is one of those. Since the source of prolonged suffering is contested by doctors, many sufferers must seek help at the edges of the medical mainstream.
To turn back to the “rite of passage” schema for a moment, anthropologist Victor Turner was intrigued by Van Gennep's demarcation of a liminal period, the “betwixt and between” stage. In the late 1960s, Turner elaborated the concept, finding it rife with both social ambiguity and possibility. For Turner, liminality evoked an unstructured space, an opposition to the dominant structure at the edges of the cultural mainstream. It is here where people experience “communitas,” a spirit of camaraderie and equality. Liminality is counter-cultural, a state of flux in which the dominant structure is recast in the image of the oppositional force until that new image becomes the structure from which to pull away.
Liminal pathology comes to mind with chronic Lyme disease and other contested medical conditions that are difficult to cure and often deemed illusory or psychosomatic. Medical anthropologist, Dr. Abigail Dumes of the University of Michigan has carried out an ethnographic project on chronic Lyme disease in the American Northeast, on its believers and naysayers and the battle over what constitutes evidence. Her forthcoming book chronicles the perspectives of doctors, scientists, and patients who have divided perspectives of the disease.
It is important to note that no one disputes the existence of Lyme disease, known to many by the bull's-eye rash that often (though not always) follows infection. Chronic Lyme disease refers to symptoms that linger, sometimes for years, after the regular course of antibiotics ends. The persistent presence of Lyme antibodies in the bloodstream can mean either past exposure or active infection. This is another source of contention between the camps: whether Lyme antibodies indicate the immune system has vanquished the disease (giving a “false positive”) or is actually still at war. Dumes explains that diagnosis relies on an antibody test rather than isolating the bacteria from the body because Borrelia burgdorferi and its DNA are difficult to culture and isolate from patients' bodily fluids.
Chronic Lyme disease is not recognized by mainstream doctors, so patients' symptoms are chalked up to other possible causes. In contrast, “Lyme-literate” doctors do recognize the disease, as do its sufferers. Lyme-literate proponents recommend an intensive and extended course of antibiotics to treat symptoms, including fatigue, joint pain, vertigo, neuropathy, and cognitive impairment, while mainstream doctors consider such treatment ineffective and potentially harmful.
The occurrence of Lyme disease dates back thousands of years, and today it is the leading vector-borne disease in the United States. Small mammals, as well as deer, are reservoir hosts of the bacteria. Approximately 30,000 new cases per year are reported, but the actual number is probably closer to 300,000. Infection rates are increasing; in fact, they have doubled since the early 1990s. Lyme disease burdens the northern United States more than the South, though incidence of Lyme or Lyme-like symptoms in the South is climbing. The more moderate climate of the Northeast (less severe and later winters than in the Midwest and Canada) has been favorable to more dangerous strains of Borrelia for people. Late summer is the feeding period for larval deer ticks, and infected nymphs (juvenile ticks, the size of tiny specks) feed in spring. Scientists report that in the Northeast, persistent infections of Lyme disease, caused by the more virulent bacterial strains, are tied to the long gap between larval and nymphal tick feeding times. In contrast, the severe winters of the Midwest end up shortening the duration of tick feeding, as well as the gap between nymphal and larval feedings. As a result, fewer cases of Lyme disease in the Midwest have been reported.
However, as the climate warms, Midwest winters are becoming more like Northeast winters have long been, foreshadowing an increase in Lyme infections in the Midwest. To make matters worse, a new species of Lyme-causing bacteria, Borrelia mayonii, was recently discovered in the Midwest. Meanwhile, the warmer atmosphere has enabled ticks to move steadily northward towards Canada, bringing Lyme with them.
Another factor contributing to the rise of Lyme disease in the Northeast are housing developments in former wildlife habitats. Suburban sprawl and people's desire to live near nature have brought humans, woodland mammals, and ticks into close contact. Dumes reflects on the conflicting views of wilderness in the North American imagination: Nature is deemed both soul-soothing and dangerous. For well-to-do Northeasterners who value properties that abut woodlands, the proximity to nature enriches people's lives, even as Lyme disease has wreaked havoc on many people's health.
You have to adapt to Lyme zones. Dumes recounts the bodily practices adopted by residents who have suffered Lyme disease. Family members often do the daily routine of intimately scouring each other's bodies for ticks, including all the nooks and crannies where ticks are prone to hide. People don knee-high socks outdoors, even in the heat of summer. They slather their skin with repellent, and toss their clothes in the dryer to roast off ticks before going indoors. Some deliberately choose white-furred pets so ticks will be more visible. Each household has its Lyme-inspired rituals, but tick checks are the common denominator. These folks dread re-infection and fret over their children playing outdoors, yet they are loath to give up the beauty and restorative effects of the forest.
The disease is caused by a spiral-shaped bacterium, Borrelia burgdorferi, named after its scientist discoverer, Willy Burgdorfer. It is transmitted from from small mammals and birds to people via the saliva of blacklegged or deer ticks. (Adult ticks favor deer as hosts.) Lyme refers to the town in Connecticut where in the mid-1970s a cluster of patients in Lyme and nearby rural areas manifested unusual symptoms, including fever, chills, rashes, arthritic joints, severe fatigue, and headaches. The cause of these ailments was a mystery, one that compelled a pair of determined women from the patient pool to further investigate on their own, contacting scientists, self-advocating, and pushing the boundaries of medical science. I suppose their efforts turned these women into “edgemen,” Victor Turner's word for the folks at the margins of the mainstream. It was not until 1981 that Burgdorfer and colleagues identified the spirochete that causes Lyme.
For over eighteen months, Dumes interviewed and observed patients, doctors (both mainstream and Lyme-literate), Lyme scientists, public health workers, politicians, and patient advocates to understand the two sides of the debate about the existence of chronic Lyme disease–that is, Borrelia-caused malaise that lingers beyond the 10 to 21 days regimen of antibiotics.
Regarding the divided camps, Dumes remains firmly nonpartisan, as it is not the job of the anthropologist to determine the truth or falsity of a disease, but to analyze how social groups construct and experience their realities, whether inside or at the margins of the medical establishment. She investigates why the dominant paradigm of “evidence-based” medicine, built on randomized control trial design, has managed to intensify the disagreement around chronic Lyme disease rather than forge consensus.
As Dumes points out, evidence-based medicine is what informs clinical guidelines, and these determine insurance coverage, treatment plans, and public health advisories. So the stakes are high for patients. Evidence-based medicine, she explains, shapes ideas about the “right ways to be sick” (the medically explainable ways), with familiar symptoms corresponding to objective “signs” in the body. It also fosters ideas about the “wrong ways” to be sick (the medically unexplainable ways) that involve a symptomatology that doesn't neatly correspond to microscopic signs and can only be described “subjectively” by the patient.
Dumes says that in mainstream medical parlance, chronic Lyme disease is a “medically unexplainable illness,” as opposed to “Lyme disease,” which is understood to be diagnosable. If you suffer from Lyme-related “illness,” your clinically ambiguous symptoms thrust you into the liminal space of medical alternatives. In the liminal zone, you are at odds with the mainstream medical authority yet determined to collect the kind of evidence that will legitimize your condition.
The sense of community among chronic Lyme patients and Lyme-literate doctors is evident in patient support groups and shared views on the causes of chronic Lyme and its effective therapies. Through interviews with patients, Dumes learned that many attribute their condition to the profusion of toxins in the environment and in their bodies. These patients believe that highly toxic environments (both external and internal) enable pathogens such as Borrelia to thrive. For them, our modern-age bodies are seen as “toxic swamps,” fertile for Lyme.
The worry over toxicity derives in part from patients' concern about their reliance on pesticides to keep ticks at bay. To detox after performing the necessary evil of spraying and applying insecticide to the skin (and patients are well aware of the contradiction), many Lyme patients eat organic and use chemical-free products as much as possible. The preference for an organic lifestyle is often accompanied by the embrace of complementary and alternative therapies. These are usually alongside a regime of antibiotics (another acknowledged contradiction).
For example, Dumes describes the Rife machine, an apparatus invented in the 1930s and tested by the medical establishment for a while. The Rife machine, no longer accepted by mainstream doctors, emits a range of electromagnetic frequencies. The theory is that bacteria and viruses can be rendered inactive if targeted with the correct frequency. Beyond Lyme, some patients, I have read elsewhere, believe that the Rife machine helps to cleanse their systems of neurotoxins, reduce co-infections, and strengthen their immune systems. Since it can run a couple thousand dollars, Dumes told me that some patients have developed a sharing economy so that more may benefit. Chronic Lyme patients may also seek out a range of other often pricey holistic health products and treatments, such as BioMats, infrared saunas, and hyperbaric oxygen chambers. To some, it's all snake oil; to others, the sources of real relief.
Looking back on the patients from Lyme, Connecticut, who in the 1970s embarked on a quest to figure out what happened to them, it is easy to imagine them in a similar situation, occupying that liminal state of neither acutely ill nor healthy. They were laid low by a disease without a name or cure, and without much will by the establishment to demystify the symptoms. After time wore on and they never fully recovered, were they considered malingerers? The evidence of a microbe, Borrelia, and its vector, the tick, transformed not only the clinical approach to a constellation of symptoms, but also the perception of the “right way to be sick.” The evidence also transformed northeastern semi-rural culture, the everyday habits, thoughts, and emotions of people living at the forest edge.