Patterns in self-reported illness experiences: letters to a TMJ support group

…and a certain woman … suffered many things of many physicians and had spent all that she had and was nothing better, but rather grew worse. Mark 5:25 Medical discourse has been widely investigated over the last two decades by sociologists, anthropologists, sociolinguists, applied linguists and discourse analysts. Medical research texts have been studied diachronically (e.g. Atkinson, 1991 ; Atkinson, 1992) and synchronically (Salager-Meyer, 1990). Pettinari (1988) examined the evolution of dictated operation notes into official documents; many have examined spoken doctor–patient communication, sometimes as an aid to improve residency training (e.g. Frankel, 1983), but more often to deconstruct the power and gender relations in those exchanges (e.g. Fisher and Todd, 1986 ; Wodak, 1996). Rather fewer studies have looked at patient accounts of their illness and pain (Garro, 1992 ; Garro, 1994), and these have concentrated on oral narratives. In this paper, we examine a collection of letters written by sufferers of TMD (temporomandibular disorders) to the TMJ Association, a North American patient support group. We will argue that this unusual source of data provides evidence for kinds of narrative not so far covered in the extensive life history literature (e.g. Linde, 1993) and additionally reveals the relevance of a little discussed thematic role—that of unaccomplished agency. In bringing this data to light, we also hope, as an interdisciplinary team, to help validate the rights, voices, and experiences of a group of predominantly female patients who have not been well served by the largely male dental establishment in the United States. But first, the essential background. Temporomandibular disorders (TMDs) refer to a heterogeneous collection of clinical problems that involve the masticatory muscles, the temporomandibular joints (TMJs), and associated structures (Okeson, 1996). In the dental and medical literature, there exists an array of alternative terms—which probably reflects current confusion—such as “temporomandibular joint syndrome” and “temporomandibular pain and dysfunction syndrome,” for the “temporomandibular disorders.” The general public and patients usually recognize these conditions under the abbreviation “TMJ.” The latter prefer such an abbreviation due to their fear that by the use of the term “disorder” health care providers, insurance companies, as well as family members and friends, may be more inclined to believe that these conditions are psychological in nature—a perception rejected by the overwhelming majority of TMJ patients (Garro et al., 1994)1. Among the classical triad of TMJ symptoms, pain in the masticatory muscles and/or the TMJ region, limitations in movements of the lower jaw, and TMJ sounds, such as clicking and grating noises (De Boever and Carlsson, 1994), pain is the most frequent and most salient complaint (Okeson, 1996). Around 97% of TMJ patients seeking treatment do so because of pain (Dworkin, 1995), and the great majority of them are women (Howard, 1991). Frequently, these patients also experience some form of pain-related disability, with negative implications for their social activities, and, as a consequence, their quality of life. As is the case for persistent pain conditions in general, feelings of frustration, hopelessness, despair, anger, anxiety, and depression are often found among patients with TMJ-related pain. What makes individuals who suffer from TMJ distinctive in relation to sufferers of many other types of illnesses is their unvalidated status as real patients. Despite the large number of individuals who suffer from facial pain in the US—around 10 million (NIH, 1996)—there is still a large institutional rejection of their pain as legitimate. Such an attitude, which comes from a range of sectors—medical, dental, insurance, and workplace—can create severe psychological, physical, financial, and social burdens on the sufferers. Moreover, even those in the medical system who do acknowledge TMJ as a true health problem find themselves in the middle of confusion and disagreement on the issues related to the disorders. Their etiology remains unclear, and there is a lack of scientifically founded guidelines for both the diagnosis and the management of the problems associated with TMJ disorders (NIH, 1996). Unfortunately, despite this deficiency of knowledge, many patients have been treated with irreversible and potentially harmful means. Moreover, in a number of cases, the symptoms resulting from treatment became a source of suffering that was even worse than the original complaints (see, for example, Moody and Clark, 1995 ; Wolford et al., 1995). In the dental and medical literature, issues related to the suffering of patients with TMJ have almost exclusively been presented from the viewpoint of the clinician. For the evaluation of the patient’s history, individuals usually answer questions initiated by the doctor, who tends to follow a certain agenda (Heritage and Sorjonen, 1994). In addition, questionnaires and standardized inventories are often used, and are subsequently scored and compared with normative data. Although such an approach is almost universally adopted by health care providers, it has been criticized as being insensitive to information about the patients’ perceptions, constructing “a hyphenated, fractioned view of a person’s life and experiences” (Gordon and Paci, 1996, p. 388). Furthermore, such an approach does not allow for different ways of communicating. In other words, patients are not free to shape their discourse because both its content and form are highly dependent on the questions asked (Drew and Sorjonen, 1997). Moreover, the types of questions asked might impose a certain coherence which would not necessarily be there otherwise (see, for instance, Dershowitz, 1996, for a discussion on the imposition of coherence upon narratives). One strategy designed to obtain greater knowledge on the impact of an illness on the individual’s life is to look at the sufferer’s personal narratives (DelVecchio Good et al., 1988 ; Gordon and Paci, 1996). So far, there has been only one study—from which four papers derive (Garro, 1992; Garro, 1994; Garro et al., 1994 ; Good, 1992)—related to illness narratives provided by TMJ sufferers. This originating project involved 32 patients, and the methodology used included pre-structured and non-structured interviews. The resulting narratives reveal an underlying set of beliefs and expectancies that individual patients use to describe, explain, and give meaning to their illness. These “explanatory models” of the specific illness’ etiology, onset of symptoms, course, and treatment seem to be influenced by cultural factors, and to vary among individuals (see Kleinman, 1980 ; Kleinman, 1988). Compared to the discoursal and medico-anthropological studies above, the analysis of TMJ letters we propose here seems to offer a complementary way of looking at the discourse of illness. First, this sort of communication involves parties in a less asymmetrical relationship than we find in interviews and in doctor-patient encounters. Second, without an interview structure, a set of questions, or other kinds of agenda, the voluntary letters individuals write from their homes will probably be less constrained in terms of content and form. Third, the relatively large size of the sample allows at least some preliminary findings about discoursal, grammatical, and lexical patterns. In this paper we introduce a multi-modal analysis of a corpus of over a hundred letters written to the TMJ Association. In addition to looking at what these individuals account for in their narratives, we also look at how that is done. We try to demonstrate that these texts offer, for the most part, two distinct ways of accounting for their writers’ medical histories: synopses (background summaries) and case histories (full-blown support-group narratives). Through an analysis of thematic roles, we also look at how these individuals construct and represent their agency in discourse. Finally, a functional “move” analysis brings together the two types of accounts with their respective thematic analyses.