Poster for "Under Our Skin," which shows a close-up of a face, the film's title, and the tagline "There's no medicine for someone like you." Image via http://new.goodwinlibrary.org/wp-content/uploads/2013/07/uos-poster_horozontal.jpg

Ticked Off: Under Our Skin and the Gender(ed) Politics of Chronic Lyme Disease

Chronic Lyme disease is one of a rather varied group of disabling and/or debilitating health conditions that have in recent years become subjects of controversy within the medical community, as well as public and media scrutiny and skepticism—often to the consternation of people who deal with these illnesses on a daily basis. Similar to multiple chemical sensitivity (MCS), fibromyalgia, Chronic Fatigue Syndrome, and Restless Leg Syndrome, chronic Lyme has been a subject of considerable debate amongst medical doctors (see these posts on Science-Based Medicine for some interesting background material), and has also been particularly galvanizing within patients’ rights communities.

Despite the ongoing controversy, people who have been affected by chronic Lyme or some sort of post-Lyme syndrome have fought to be heard by the medical establishment, the media, and the general public. In recent years, “chronic Lyme” has been getting more attention from the media and the public, and has even come up in popular culture in recent years. In Sini Anderson’s 2013 documentary film on influential riot grrl feminist and musician Kathleen Hanna, The Punk Singer, Hanna reveals that the energy-sapping health issues that have been plaguing her since 2004 (and which caused her to stop performing in 2005) stem from chronic, late-stage Lyme disease. A feature-length documentary about Lyme disease, Under Our Skin, was released in 2009.

But despite more media coverage–such as Michael Specter’s in-depth 2013 article in the New Yorker on Lyme and the controversy around whether it can be a chronic disease–there has been little acknowledgment, or analysis, of the gender politics that surround the condition, its supposed “unrealness,” and patient experiences that heavily intertwine with sexism. Unfortunately, Under Our Skin, as a documentary purporting to show the chronic Lyme experience from the inside, does little to examine these multiple oppressions–and given the history of women with chronic health issues being dismissed and belittled by the media, much of the medical establishment, and even their friends and family, this seems like a missed opportunity.

Under Our Skin works effectively as a polemic, but its coverage of gender issues in the diagnosis and medical/social treatment of “controversial” and debilitating health conditions leaves much to be desired.

The film takes a particularly sympathetic view towards people with chronic Lyme, as it profiles several individuals who live with the disease and have experienced frustration, outright disbelief from those around them, and little to no support from doctors in pursuing diagnosis and treatment. The documentary and the questions it raises have much to do with the conception of Western–and specifically U.S.-ian–doctors as “gatekeepers” of medical knowledge and patients’ rights, gender parity (or lack thereof) in diagnosing and treating syndromes that are poorly understood.

According to the U.S. Centers for Disease Control, Lyme disease is a bacterial infection caused by the spirochete Borrelia burgdorferi, which are passed into the human bloodstream via deer tick bites. The notion of chronic Lyme is controversial since the bacteria that cause the disease are, once detected, killed off with an antibiotic regimen to which the patient adheres for several weeks–but this regimen only works if the disease is detected and treated early enough. Dr. Paul Offit, in his recent book Do You Believe in Magic? The Sense and Nonsense of Alternative Medicine, cites several studies showing that long-term antibiotic therapy for Lyme has been found to be ineffective for people with the disease; he further makes the point that there are, unfortunately, quacks aplenty in alt-med circles who prey on desperate patients by shilling “natural” cures for chronic Lyme–all of which have questionable efficacy, as detailed by Edward McSweegan at Quackwatch.

Some people who are treated for classic Lyme, however, find that their symptoms—which can include severe pain, fatigue, muscle weakness, and unexplained neurological symptoms that range in severity from patient to patient-–do not disappear once the antibiotic regimen has ceased. Indeed, many Lyme patients live with chronic symptoms long after they have completed the recommended course of antibiotic treatment; while a small group of doctors believe that chronic Lyme exists, many medical organizations and doctors have claimed that there is no medical or scientific basis for chronic Lyme disease.

Under Our Skin works effectively as a polemic, but its coverage of gender issues in the diagnosis and medical/social treatment of “controversial” and debilitating health conditions leaves much to be desired. From a general count of the subjects interviewed in the film, most appear to be white women between the ages of 20 and 65. Many of the interviewees are simply shown talking to an unseen interviewer in front of a white background; most are presented without any information such as their names, geographical location, circumstances under which they may have contracted the disease, how long they have dealt with Lyme, or related statistics. This strategy seems to work in terms of presenting Lyme as a major public health issue—the viewer can, presumably, identify with these apparently nameless patients—but it unfortunately undercuts any gender commentary that the film might at first appear to be making in favor of a false populist “we are Lyme disease” series of short interviews.

A substantial number of the women interviewed bring up sexist dynamics in discussing their initial diagnoses and interactions with doctors. One of the young women profiled in-depth, Mandy Hughes, comments that one doctor told her, “There is nothing wrong with you. You’re an attractive young woman, and obviously you’re not getting enough attention from somewhere.” This statement is presented free of social, historical or political context, and without any additional reference to the fact that illness and physical pain and symptoms in women are often still—even in modern medicine—seen as having a psychological, rather than physiological, basis.

Several other women in the film—including Polly Murray, whose activist efforts in Lyme, Connecticut in the 1970s contributed much to the initial medical assessment of Lyme disease as a major public health issue—echo Hughes’ comments. Again, many of these comments are presented “talking-head” style as outlined above—the women who share their experiences of not being taken seriously by doctors are not identified in any substantial way.

Some viewers may notice that there is a common theme in that many of the women interviewed here have been told by medical professionals that they are, variously, “attention-seeking,” making a “big deal” out of seemingly non-disabling or vague symptoms, or that their illness or pain are “all in [their] head,” but the film does not connect this to any larger (gendered) patterns, whether social, cultural or historical.

Certainly, a few of the men with chronic Lyme interviewed in the film say similar things about their interactions with doctors; however, given the troubling history of sexist and paternal attitudes leveled at women with poorly understood conditions (particularly those that feature “mysterious” pain and fatigue as primary symptoms) by both doctors and Western medicine, the film does a great disservice by presenting this treatment of women as something both unconnected to larger social patterns and as something that does not need further comment.

In effect, Under Our Skin presents the “gender(ed) trouble” of the medical establishment’s attitudes toward invisible, disabling chronic health issues and the effect(s) on women with those illnesses in a roundabout manner, but without actually engaging with those issues in any substantial way. Even acknowledging that these issues that whirl around gender and illness are borne of some extremely sexist historical precedents and social patterns would have helped the film’s case, but those intersections are not touched upon at all—only hinted at.

There is no question that people with Lyme disease and so-called “chronic Lyme” are suffering. While ticks do not discriminate based on gender, it is crucial to take notice of how yet another “mysterious” disease gets tangled with some very old notions about gender, health, and whose symptoms merit treatment.