Morgellons: from a personal trouble to a public issue
In the spring of 2001, Mary Leitao claims to have witnessed a fibre sprout out of her two-year-old son’s face, spontaneously emerging from a skin rash that she was treating with a medicinal ointment. Leitao brought her son to a medical facility, where a doctor diagnosed him with eczema and maintained that the fibre was some type of innocuous discharge (Harlan 2006). But when Leitao’s son developed more sores and emergent fibres, she took him to several other physicians, all of whom denied the severity of her son’s skin rash. Leitao terminated her search when the ‘last doctor she tried to consult … not only refused to see her, but … suggested it was a case of Munchausen’s by proxy’ (DeVita-Raeburn 2007: 96). Eight years later, the contested illness known as Morgellons can be traced back to these initial conflicts between Leitao and the medical community.
According to the Morgellons website (http://www.morgellons.org/), which Leitao created in 2002 in order to spread information about her son’s mysterious illness, Morgellons is characterised by open skin lesions and infections, protruding fluorescent fibres and a host of related neurological problems. Morgellons sufferers believe that their sores and itchiness (which many liken to the sensation of bugs crawling under the skin) are caused by an unknown infectious pathogen. However, the overwhelming majority of medical experts believe that Morgellons is simply a new name for the longstanding psychiatric condition Delusional Parasitosis (DP), whose symptoms virtually match Morgellons. In cases of DP, mentally ill patients believe that there are insects or bugs beneath their skin, which results in sufferers digging and picking at their bodies and their subsequent infections (Koo and Lee 2001). Therefore, when Morgellons patients come to dermatologists with lesions and the sensation of crawling skin triggered by bugs or emergent fibres, doctors routinely diagnose them with DP. As dermatologist Norman Levine states: ‘[Morgellons] is not a mysterious disease … If you polled 10,000 dermatologists, everyone would agree with me [that Morgellons is DP]’ (Monaghan 2006).
Despite its legitimacy being denied by nearly the entire medical community, Morgellons has generated an exceedingly high level of public inquiry and concern, ostensibly prompting the Centers for Disease Control and Prevention (CDC) to fund an approximately $500,000 multi-year Morgellons research project, which is currently being carried out by Kaiser Permanente in Northern California (http://www.cdc.gov/media/transcripts/2008/t080116.htm). As such, the central question of this article is: How did Morgellons evolve from a patch of clinically diagnosed eczema on one toddler’s skin into a nationwide contested illness that ultimately commanded the attention and research power of the CDC? The data for this research come from a comprehensive qualitative analysis of Morgellons discourse through four key sources: Leitao’s pro-Morgellons website, the anti-Morgellons website Morgellonswatch (http://morgellonswatch.com/), the popular media’s portrayal of Morgellons, as well as the DP and Morgellons articles published in peer-reviewed medical journals, as made available on PubMed.
The case of Morgellons illustrates how the emergence of a new medically contested illness intersected with and impacted on the diagnostic processes of an existing uncontested psychiatric condition. According to the medical community, Morgellons originated not as a stand-in name for her son’s unknown infectious disease but as a possible manifestation of Leitao’s own psychiatric illness, Munchausen’s by proxy. Moreover, as the ‘putative conditions’ (Spector and Kitsuse 2006) of Morgellons developed from Leitao’s personal problem into a social issue, Morgellons’ symptoms and patient behaviours matched up with the diagnostic criteria of another known psychiatric illness, DP, which has existed in the international medical literature for roughly 100 years. Because of Morgellons and DP’s similarity, doctors routinely diagnosed patients who claimed to have Morgellons as if they were DP patients. This clinical intersection between Morgellons and DP impacted on both the social construction of Morgellons as a contested illness and the existing diagnostic protocol associated with DP.
The interactive relationship between Morgellons and DP only becomes evident when it is viewed in motion. I therefore conceptualise Morgellons as an emergent ‘trajectory’, which originated in the symbolic interactionist work of Strauss (1978, 1993). Here, I follow the trajectory perspective provided by Garrety and Badham (1999), which they formulate in their research on the social construction of technologies, specifically the development and implementation of a new computer system in the workplace. Summarising their model, Garrety and Badham (1999: 279) write: ‘Trajectories exist of complex mixtures of plans, routines, and improvisations. They are not simply unfoldings of initial conditions or strategies, nor are they determined in any straightforward way by social, political, technical, or economic circumstances.’ The distinct feature of Garrety and Badham’s trajectory research is highlighting how people’s interactions constitute micro-level political processes that socially construct the form and content of contemporary technologies.
Key to their trajectory perspective, then, is a politicised conception of people’s everyday social relations. Garrety and Badham (1999: 278-9) write: ‘For us, politics is a collective, communicative activity that is goal-directed and ‘clever’ in some way. … Through interactions … people try to change the meaning of ‘things’ so that particular courses of action become easier or more difficult, and certain assumptions become routine whereas others are excluded’. I adopt this notion of interactionist politics in tracing out the Morgellons trajectory, illuminating the connections between the Morgellons website and the Morgellons contested illness community, the various means by which the political salience of Morgellons became amplified, and how these dynamics relate to the CDC’s investigation of Morgellons and clinicians’ reconsideration of the DP diagnostic protocol. I generally place this analysis within the research on ‘Health Social Movements’ (Brown et al. 2003a, 2003b, 2004, 2006) and ‘Medically Unexplained Physical Symptoms’ (Zavestoski et al. 2004). The spirit of ‘Health Social Movements’ (HSM) and ‘Medically Unexplained Physical Symptoms’ (MUPS) studies involves how lay expertise and embodied illness experiences can become politicised and serve as mechanisms in challenging biomedical and scientific knowledge, ideally democratising the ‘dominant epidemiological paradigm’ (Brown et al. 2004). The case of Morgellons shows the ways in which a small contested illness community can utilise the Internet to push its political agenda, attracting the attention of the CDC.
More specifically, I ground this research in two literatures: (1) contested illness studies that investigate the illness experience of patients whose symptoms lack biomedical explanation (Kroll-Smith and Floyd 1997, Kroll-Smith et al. 2000, Dumit 2007, Moss and Teghtsoonian 2008); and (2) medicalisation research (Conrad and Schneider 1992, Conrad and Potter 2000, Conrad 2007), focusing on studies that explore the relationship between the Internet and the expanding contours of medicalisation (Eysenbach et al. 2004, Broom 2005, Fox et al. 2005, Barker 2005, 2008). These two literatures derive from several common sources, namely: growing patient empowerment, the internet’s role in spreading medical information, as well as uniting contested illness identities, the American public’s distrust of the medical community, and people’s mounting anxiety about the natural environment and its impact on their health. But these two literatures also differ. Contested illness research tends to focus on patient empowerment; alternately, medicalisation research interrogates the contours of increasing medical authority (Conrad and Stults 2008).
In what is currently the lone study that directly investigates the possible connection between medicalisation and an internet illness community, Barker’s (2008: 23) analysis of a Fibromyalgia ‘electronic support group’ (ESG) finds that patients’ online communications reify self-diagnosed health conditions and generally ‘encourage the expansion of medicine’s jurisdiction’. Therein, Barker (2008: 32) references Morgellons, writing: ‘online support groups are now mounting demands for the medical acceptance of Morgellons, a condition that most physicians believe to be delusional. Patients, however, maintain that they suffer from an organic condition characterized by itchy fibres under the skin that often appear blue or red in color… But there will also be less fantastical examples.’Barker (2008: 33) calls for studies determining ‘to what extent … ESG participants actually challenge their individual doctors by referencing the knowledge claims of their illness communities, and to what effect?’
As the following analysis will reveal, the sociopolitical processes at play in the Morgellons trajectory dubiously reflect patient empowerment, as well as the resilience and power of medical jurisdiction. With that, this research offers insights into the contested illness and medicalisation literatures, and aims to bridge these two approaches towards medical authority. I do this by highlighting how the clinical intersection of DP and Morgellons illustrates a diagnostic compromise between doctor and patient. First, though, I explain how I gathered my data, which set up my empirical description and subsequent analysis of Morgellons.