Association, a North American patient support group. We will argue that this unu- sual source of data provides evidence for kinds of narrative not so far covered ...
LANGUAGE & COMMUNICATION
Language & Communication 19 (1999) 127±147
Patterns in self-reported illness experiences: letters to a TMJ support group Ana Cristina Ostermann a*, Jill D. Dowdy a, Stephanie Lindemann a, Jens C. TuÈrp b, John M. Swales a a
Program in Linguistics, 1076 Frieze Building, University of Michigan, Ann Arbor, MI 48109-1285, USA b Facial Pain Clinic, School of Dentistry, University of Michigan, Ann Arbor, MI 48109-1078, USA
Keywords: Letters; TMJ; Illness; Narratives; Discourse; Thematic analysis
. . .and a certain woman . . . suered 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, 1992) and synchronically (Salager-Meyer, 1990). Pettinari (1988) examined the evolution of dictated operation notes into ocial 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, 1994), and these have concentrated on oral narratives. In this paper, we examine a collection of letters written by suerers 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 roleÐthat 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 ®rst, the essential background. Temporomandibular disorders (TMDs) refer to a heterogeneous collection of clinical problems that involve the masticatory muscles, the temporomandibular *Corresponding author. 0271-5309/99/$ - see front matter # 1999 Elsevier Science Ltd. All rights reserved. PII: S027 1-5309(98)0001 1-1
128
A.C. Ostermann et al./Language & Communication 19 (1999) 127±147
joints (TMJs), and associated structures (Okeson, 1996). In the dental and medical literature, there exists an array of alternative termsÐwhich probably re¯ects current confusionÐsuch 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 natureÐa 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 suer from TMJ distinctive in relation to suerers of many other types of illnesses is their unvalidated status as real patients. Despite the large number of individuals who suer from facial pain in the USÐaround 10 million (NIH, 1996)Ðthere is still a large institutional rejection of their pain as legitimate. Such an attitude, which comes from a range of sectorsÐmedical, dental, insurance, and workplaceÐcan create severe psychological, physical, ®nancial, and social burdens on the suerers. Moreover, even those in the medical system who do acknowledge TMJ as a true health problem ®nd 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 scienti®cally founded guidelines for both the diagnosis and the management of the problems associated with TMJ disorders (NIH, 1996). Unfortunately, despite this de®ciency 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 suering 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 suering 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 1
In this paper we deliberately align ourselves with the patients and use the abbreviation TMJ to refer to what in the medical literature is usually referred to as TMDs.
A.C. Ostermann et al./Language & Communication 19 (1999) 127±147
129
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 dierent 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 suerer's personal narratives (DelVecchio Good et al., 1988; Gordon and Paci, 1996). So far, there has been only one studyÐfrom which four papers derive (Garro, 1992, 1994; Garro et al., 1994; Good, 1992)Ð related to illness narratives provided by TMJ suerers. This originating project involved 32 patients, and the methodology used included pre-structured and nonstructured 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 speci®c illness' etiology, onset of symptoms, course, and treatment seem to be in¯uenced by cultural factors, and to vary among individuals (see Kleinman, 1980, 1988). Compared to the discoursal and medico-anthropological studies above, the analysis of TMJ letters we propose here seems to oer a complementary way of looking at the discourse of illness. First, this sort of communication involves parties in a less asymmetrical relationship than we ®nd 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 ®ndings 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 oer, 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. 1. Methodology 1.1 Preliminaries The studies cited in the previous section have predominantly relied for their data on skilled interviewers recording their informants' responses to oral questioning. As with most methods, these approaches have their advantages and disadvantages. On
130
A.C. Ostermann et al./Language & Communication 19 (1999) 127±147
the positive side, such sociological/anthropological investigations, by their probing and recursive nature, reveal much about the individual cases. Further, the procedures used are likely easily accessible to the wider health science community because of their comparability with the case-noting and history-taking practices of that community. In eect, these methods can both capture and interpret the central features of reported experiences as revealed through investigator-informant interactions. On the other hand, the structure of those self-reports is likely in¯uenced by the investigators' own aims and purposes, while the scope of what they may contain may be similarly constrained. Further potential disadvantages, at least in terms of deriving general conclusions, stem from the relatively small samples achievable. The complementary approach we have adopted relies on a sizable number of written accounts of TMJ experiences submitted as part of communications with the TMJ Association, a national support group based in Milwaukee, Wisconsin (USA). According to association president Terrie Cowley (1996), the main functions of the association are sending information to anyone who requests it, including suerers and the media; advocating in Congress and elsewhere for more research; promoting awareness; and more informally, helping suerers get in touch with other suerers or support groups. There are two noteworthy aspects of the accounts sent to the association: (1) they were unsolicited; and (2) they were not pre-structured by, say, a sequence of questions on a questionnaire. While four accounts were indeed attached to an application/survey form and one written on the form itself, the great variations in length, and in size and type of paper used all suggest these were voluntarily written separately from the forms. In addition, the great majority were handwritten, often apparently in some haste, which leads us to further believe that these accounts were, for the most part, likely to cluster around the more spontaneous pole of written communications as opposed to being polished and recursively revised attachments. Moreover, there are no established norms, templates, or schemata for such appended accounts; this is not a consciously-recognized genre such as a reÂsumeÂ, a conference abstract, an application letter, or even a cover letter accompanying a submission to this journal. Exemplars of such texts are not in the public domain. In addition, there are widespread suggestions in the literature that TMJ represents very much a ``woman's disease'' (Howard, 1991), and one in which dental practitioners have had some tendency to ascribe patient complaints to socio-psychological factors, such as ``family diculties'', ``stress'', or, particularly, to various kinds of ``neurosis'' (Garro et al., 1994). We ®nd evidence of this in our own sample in statements such as ``(the chiropractor) stood in front of me and applied pressure to my forehead, asking me to resist it, and said I had emotional problems that were causing the pain'' (letter No. 7). In this double context, evidence that there are patterns and regularities of various kinds in the accounts, and that these accounts are coherently and eectively integrated into the overall purpose of the letter would thus work to discountenance perceptions that TMJ is, as often as not, a hysterical response by idiosyncratic and otherwise-troubled individual women. As we observed earlier, however, few methodologies are without drawbacks. While we believe that the present study is complementary to the anthropological work successfully pioneered with TMJ patients by Garro and other authors (Garro
A.C. Ostermann et al./Language & Communication 19 (1999) 127±147
131
1992, 1994; Garro et al., 1994; Good, 1992), it is constrained by lack of information about the correspondents beyond that self-reported in the letters. For ethical reasons, we asked the TMJ Association to remove all elements that would identify the authors. Additionally, as discourse analysts moving into a new area, we did not want to pre-judge what we might ®nd by looking for prior correlations with, say, certain socioeconomic factors. Rather, our primary focus has been on textual ``regularities'' (or their absence). In this sense at least, our study should be considered as preliminary, especially because we recognize that the corpus examined is inevitably subject to ``membership bias'', so that members of this group may not necessarily be representative for all patients suering from persistent TMJ problems (for an illustration of the membership bias problem, see Sackett, 1979). 1.2 The corpus In 1995, after a meeting between the TMJ Association President and representatives of the Dental School and the Linguistics Program at the University of Michigan, it was agreed that a team eventually consisting of one dental and one linguistics faculty member and three doctoral students in linguistics would analyze a corpus of written communications addressed to the TMJ Association by individuals who either identi®ed themselves as suerers of TMJ, or suspected they had this disorder. We asked the TMJ Association to send us a run of 200 consecutive incoming communications, after they had removed personal identifying matter and assigned each communication a number from 1 to 200. We analyzed 111 of these communicationsÐthose which contained some sort of historical account of the writer's illness. Of the 89 excluded from our analysis, 3 were duplicates, 60 were application forms only, and 13 were letters which variously identi®ed the writer, asked questions, requested information of various kinds, or occasionally made suggestions for the future direction of the TMJ Association's newsletter, but contained no account of the writer's illness. Eleven described only the writer's current circumstances, one was apparently a follow-up to a telephone conversation and dealt with the eects of the disability on the writer's family, and one described the author's role as an activist in the TMJ cause. 1.3 Types of analysis We developed a ``family'' of analytical methods that would investigate the material in various ways and at various levels2. At the sentence level, we looked at how the writers textually presented themselves, concentrating on the roles that the writers could have in processes or events. Such roles may be linguistically re¯ected via thematic roles (Halliday, 1985; Frawley, 1992). We focused on four primary categories (Frawley, 1992): agent, patient, experiencer, and benefactive. 2 Preliminary results were presented at the annual meeting of the TMJ Association, which took place in Bethesda, MD, on April 28, 1996. The presentation was subsequently published in the TMJ Report (Akar et al., 1996).
132
A.C. Ostermann et al./Language & Communication 19 (1999) 127±147
At the discourse level, we used a rhetorical ``move'' analysis (cf. Swales, 1990) in order to capture the communicative purposes of the whole communications. In addition to the account of the writer's TMD experience, move-elements included such categories as: (a) expressing a desire to join; (b) asking for information; and (c) oering to help in some way. Dierences in the ``narrative'' move led us to develop a simple but useful typology for these accounts. Finally, we investigated how the different narrative types related to the types of moves used and agency expressed by the letter-writers. 2. Results As we have seen, 111 of the 197 written communications to the TMJ Association contained narrative elements, as de®ned in the previous section. We found that within this subset, narratives appeared to take one of two general forms, which were dubbed synopses and case histories. The overall tenor and general arrangement of the majority of the synoptic-account letters and of the case histories can be gauged from the following complete examples: Synoptic account No. 166: Dear Terrie Cowley, I read the recent article in the Wall Street J3. I am a Proplast victim and would appreciate any information you may have. I also have had silastic implants. I am now totally disabled. I had 8 TMJ surgeries, starting in 1985 till 1991. I have auto immune disease, connective tissue disease, etc. Any information you may have would be deeply appreciated. Case History account No. 20: To whom it may concern, To begin with I must say I get more frustrated every day because I don't know how I will continue to live with this pain every minute of my life. Physically and mentally and painfully I feel real stupid just from being sick so long. I am writing from the bottom of my heart about this sad problem of the implant that was put into my body in 1984. I will make no excuses for my wording or paragraphs or anything. I stay by my self most of the time because it hurts too bad to be with people. It hurts to talk or eat and I feel death will be the only relief I will ever have. I am trying as hard as I possibly can to lead a normal life, but it is impossible. My head and my skull never stop hurting. I take strong pain medicine every day, but nobody wants to give you medication. The reaction of the doctors in Louisiana was that I was just not coping with my pain (the doctor who did the implant.) He should suer only 30 minutes of this torture. Needless to say I have changed doctors, but no doctor really wants to 3
The writer of this letter refers to the article ``Implants in jaw joint fail, leaving patients in pain and dis®gured'' by B. Ingersoll and R. Gut®eld, published in the Wall Street Journal on August 31, 1993.
A.C. Ostermann et al./Language & Communication 19 (1999) 127±147
133
treat us the patients who have been injured with this implant. It is very embarrassing to have to go to the doctor if you can ®nd one who really cares about pain. I'm dying with pain. Please help me. I have done this since 1984 and I don't see any end to it. I did consider myself to be an intelligent person, I do not even come close to normal with severe and intractable pain all the time. I have had to have a total joint because of bone deterioration. I sleep whenever I can. I have chronic fatigue. I have . . . so badly that my eyes are becoming very bad. I can't swallow very well. Also my legs and feet turn black. Thyroid does not work, chronic hoarseness, dry cough, and anemia. Teeth have been all crowned in 1985, now jaw is shifting more and we can not stabilize it enough to do any more dental work. I feel the bones in my face, neck, and skull are torn loose from the rest of my body. Memory loss, severe . . ., dyslexia, vertigo. I have fallen twice within the last two weeks and my jaws are so sensitive I could feel them tear. Ear pain, hearing impairment. Medical bills are mounting seriously. I could tell you more but hopefully you will understand. I feel I am being tortured to death. I want to be well and free of some pain. It is hard and sad to tell anyone how painful this is. Most of all, I am afraid we the patients who have been injured by this implant will not be taken care of medically. I need and want my health back more than anything in this life. Sincerely, As Table 1 shows, synopsis and case history narratives of TMJ experience make up 82% of all accounts. The remaining accounts employ a combination of both synopses and case histories. For reasons of space, we will not discuss this minor category here. We take the marginally smaller synopsis group ®rst, since these narratives tend to be shorter and less complex. 2.1 Synopses We de®ne synoptic accounts of TMJ experience as being summary-like retrospectives with no chronologically-organized narration of the process or history of the disorder. Although many were short and simple, all synopses included at least one of the following elements: Table 1 Types of account
Synopses of TMD experience Case histories of TMD experience Hybrids of the above Total
Number of letters
Percentage
45 47 19 111
40.54% 42.34% 17.12% 100.0%
134
A.C. Ostermann et al./Language & Communication 19 (1999) 127±147
(a) (b) (c) (d) (e)
a length-of-suering statement; a summary of procedures received; an account of physical symptoms; a description of pain; a reference to ``frustration'' (i.e. lack of access, denial of bene®ts, being ``given the run-around'', etc.).
The commonest opening strategy (18 out of 45 cases) is a statement of the writer's illness with a length-of-suering element. The lexical verb choices tend to be either suer (10) or have (7). The one exception (letter No. 65 below) makes its point in a particularly telling manner: No. 16: I suer from TMJ and have for the past ®ve years. No. 43: I had had TMJ for 20 years. No. 65: I have been living or I should say not living with TMJ for the past twelve years4. Another common element (16/45) is the enumeration or description of treatments or procedures. This element can either open the synoptic account or follow the previously-discussed element. Here are some typical examples: No. 16: I suer from TMJ and have for the past ®ve years. In these ®ve years I have had nine surgical procedures which have not been successful. No. 90: I have had 5 surgeries for it, the disc5 has been removed. No. 38: I am 39 & have over the last 15 years been to 7 dentists, 2 orthodontists, 6 doctors, 1 surgeon and physical therapy for TMJ. As the above examples show, this element in the synopsis (like the previous one) relies on the heavy weight of the numbers for rhetorical eect. The great majority of the letters are hand-written and most give the impression of being written in some haste. However, those writers that opt for synoptic accounts seem to have the precise numbers of how many years or how many operations at their ®nger-tipsÐor perhaps burned into their memories. The remaining three typical elements in synoptic accounts deal with physical symptoms, pain itself, and frustrations. Here are two examples of the ®rst: No. 4: I have had scans and M.R.I. They say my discs are goneÐthere is a hole in the cartilage and the ligaments6 are chewed up. 4
We have italicized relevant elements. Underlines and upper case are original emphases in the corpus. The writer of this letter refers to the articular disc of the temporomandibular joint. 6 The writer of this letter refers to the articular disc (``cartilage'') and the ligaments of the temporomandibular joint. 5
A.C. Ostermann et al./Language & Communication 19 (1999) 127±147
135
No. 169: I've had TMJ surgery x 4 with implants. During one surgery my facial nerve was severed on the right side leaving me permanently injured. Much more surprisingly, at least prima facie, only 12 out of the 45 synopsis letterwriters directly referred to their own pain or discomfort. Here are some examples: No. 70: I have had a severe TMJ for 20 years with face, neck, shoulder and back pain. No. 102: It's been 3 1/2 years of plain hellÐ24 hours a day. Finally, there are the frustrations (7/45), sometimes over ®nancial diculties, but more often over a general lack of progress: No. 15: After 11 operations on my head, 8 for my jaw/mouth, I applied for social security and got turned down. No. 83: I have been suering from TMJ for the past 15 years & do get somewhat frustrated at times. The 41% of the writers who chose to provide short synoptic accounts of their TMJ experiences come across as a group of people who, with relatively few exceptions, are in control of their stories, if not in control of their lives. There are a limited number of elementsЮve in all, although no letter actually exercised all ®ve possibilities. The heavy quanti®cation in the synopsis narration seems to be an eective way to quickly establish one's legitimacy as a TMJ suerer and justify the request which tends to follow; i.e. typically providing background to a business-like and eectively formulated request of some sort. 2.2 Case histories As the second major letter type, the case history comprises 42% (47/111) of the corpus. Case-history letters are characterized as presenting a chronologically-organized narration of the process or history of the disorder in which the patient gives more speci®c information about how TMJ, and its symptoms and treatments, have progressed over time. More speci®cally, case histories can be distinguished from synopses in two main aspects: (a) implicit or explicit reference to at least two points in time which refer to any or all of the following: length of the suering, physical symptoms, diagnosis, and treatment; (b) evaluation of the success of the diagnoses, treatments, insurance claims, on a step-by-step basis. Unlike the synopsis accounts, case-history letters present speci®c references in time, and quite often, rich details of the unfolding of the disease, search for diagnosis, treatment, and insurance coverage over time:
136
A.C. Ostermann et al./Language & Communication 19 (1999) 127±147
No. 14: 3 months ago I had to have both of my discs removed the pain had become so severe. No. 173: I had maxillary osteotomy in 1983 and wore braces for 5 1/2±6 years to correct an overbite. No. 93: In 1978 I was injured in an industrial accident and my TMJ problem wasn't diagnosed until 1990 when I was hospitalized for an apparent stroke. The same contrast is valid for the step-by-step basis of the evaluation. While in the synopses one can ®nd evaluations, they tend to be holistic ones; i.e. evaluations of the overall current or past happenings, including the pain, suering, and treatments: No. 60: I have suered 15 years with this problemÐI've had surgery, Arthosentresis [sic], medication but I still suer. In contrast, in case-history letters the evaluation element tends to be intercalated with each eventÐa complex type of problem±solution structure (Hoey, 1979, 1983). That is, the evaluation provided concerns each diagnosis, medical procedure, talk to a certain specialist, surgery, and/or insurance claim, as the following excerpt demonstrates: No. 105: . . . I had my discs sewn back into place. That didn't work, so I had my scar tissue ¯ushed out. Again, no luck. So I had surgery. . . . Of course, not a lot of success. Thus, we see that writers of case histories, rather than relying on the heavy weight of the numbers as do the writers of synopses, rely on a sequential iteration of (usually failed) treatments and procedures for rhetorical eect. We ®nd the two elements (a) and (b) (see above) obligatory for a narrative in the TMJ patients' letters to be a case history. There are, nevertheless, other elements that are optional. These are: (c) account of the perceived genesis of TMJ as indicated by some external, physical trauma, or by the ®rst symptoms; (d) description of the pain experienced and its debilitating eects on the patients' physical, emotional, social, and/or professional life; (e) reference to frustrations associated with treatment, and to related acts of resistance against the medical establishment. Perhaps the most striking of them all is the genesis element. We ®nd that patients are inclined to begin their narrative by describing the genesis of the illness as rooted in the body (25/47). That tends to occur in one of two ways: ®rst symptoms or trauma.
A.C. Ostermann et al./Language & Communication 19 (1999) 127±147
137
No. 7: I ®rst experienced symptoms during the 1st trimester of my ®rst pregnancy, in November 1987. I felt/heard loud clicks while eating a bagel, and went to my general dentist. No. 1: My TMD was caused by a chiropractor who prescribed neck traction. . . . The traction was instructed backwards and fractured both sides of my jaw. The recounting of the genesis as rooted in the bodyÐbe it a ®rst symptom or a traumaÐmay also indicate a strategy to legitimatize the chronic pain condition as having a physical basis. As suggested by Garro (1992) and Good (1992), there seems to be a struggle among TMJ patients to place the illness in their bodies, as a way to disqualify many practitioners' diagnosis of it as psychogenic. Below are some examples taken from the case histories that evidence such a fact: No. 7: The chiropractor blamed psychological factors for my problems! He stood in front of me and applied pressure to my forehead, asking me to resist it, and said I had emotional problems that were causing the pain. No. 11: [The surgeon] uses all the mechanical gimmicks to prove that I was a chronic complainer. As for variable element (d) aboveÐdescription of the pain experienced and its debilitating eects on the patient's physical, emotional, social, and/or professional lifeÐwe ®nd it represented in the letters in several ways. Certainly, the description of the debilitating physical eects caused by TMJ is the most common in the letters: 28 letters have such a description. But another eect of suering with TMJ (at least in the US) is having to cope with the excessive costs of the treatments often not covered by insurance companies, which consider TMJ a dental type of illness and may therefore deny support (9 letters refer to the fact). The ®nancial burden caused by the expenses for TMJ treatments is also frequently aggravated by the patient's inability to remain in regular employment. No. 19: These implants were to help me but instead cause so many problems that I am no longer able to work. No. 85: Since I have not gone back to work, my husband has to pay all the bills + take care of me and our two children. If there were to be no charge for you just to answer my letter I would appreciate it very much. TMJ does not only aect the body and its functioning, but it canÐand usually doesÐdeeply aect the patients' emotional life, disrupting family relationships and even breaking down the self. We ®nd extensive and quite touching reports on this matter. Here is part of one example: No. 20: To begin with I must say I get more frustrated every day because I don't know how I will continue to live with this pain every minute of my life. Physically
138
A.C. Ostermann et al./Language & Communication 19 (1999) 127±147
& mentally & painfully. . . . It hurts to talk or eat and I feel death will be the only relief I will ever have. I am trying as hard as I possibly can to lead a normal life, but it is impossible. My head and my skull never stop hurting. . . I'm dying with pain. Please help me. . . Finally, there is element (e), present in 20 of the 45 case histories: reference to frustrations associated with treatment and to related acts of resistance against the medical establishment. Some of the written narratives not only report the patients' lack of success with treatments, but also the rage created by this frustration: No. 47: My supposed ``expert'' (NO WAY) he does have a good reputation due to his sel®sh ``good guyÐI'm so nice & care for youÐI am your best friend'' etc. etc. ACT of his. He had me in AGONY (still am) though a little better due to just not going to appointments I called torture appointments... I was in agony as I saidÐ10 yearsÐI've been going to him since 1984. I had for 3 years A WORTHLESS $900.00 splint7 that he took o ONLY when the expensive thing fell apart in pieces due to AGE. . . . I still ®ght the fatigue, loss of appetite, pain & hatred for the dentist/doctor/lawyer ``get rich and take up for each other'' Period. I hate them & I want to sue. No. 7: I consider my own experiences to be nothing short of scandalous. I feel that except for my current oral surgeon, the behavior of medical professionals has been outrageous. . . . I am thoroughly shocked and disgusted at the state of TMJ treatment. Not one health care professional has truly assumed any responsibility for my treatment. To sum up, the case-history writers take the reader through their TMJ experience step-by-step, often in excruciating detail. The writers come across as being more involved in their narratives through the detail of their presentations of introspective information (see Tannen, 1989, for the role of detail in the creation of involvement). Here, the majority of these writers describe their pain, and a substantial minority discuss their frustrations. As we will see in the next section, these writers appear to be writing a support-group narrative rather than a business letter. 2.3 Other-than-narrative moves: synopses and case histories in context The synoptic accounts rarely extend beyond three sentences within a letter. In 34 out of 45 cases (75%) they occupy a medial position in, and sometimes as, the ``body'' of the letters. Just eight accounts open the letters, while only three occur at the end (in one case appended as a postscript). In contrast, the case histories vary widely in length, from a few sentences to several pages long.
7
A bite splint is a removable intraoral usually made of acrylic resin. Bite splints are often used in the management of TMJ. Dierent types of bite splints exist.
A.C. Ostermann et al./Language & Communication 19 (1999) 127±147
139
Table 2 Main moves (letters with repeated moves in brackets) Move
Synopsis letters
Case-history letters
86.7% (20.0%)
76.6% (19.1%)
Dues enclosed/membership application
48.9% (0.0%)
34.0% (4.3%)
Thanks/appreciation
48.9% (2.2%)
68.1% (14.9%)
Read about the TMJ Association
31.1%
21.3%
Oers
6.7% (0.0%)
12.8% (6.4%)
Requests for information
We have classi®ed the various other-than-narrative moves or functional communicative acts (Swales, 1990) discernible from the language of the letters into groups, which we list in order of frequency of occurrence in the synoptic accounts (Table 2). Taking case histories and synopses separately, we see that they not only have different proportions of other-than-narrative moves, but that these moves are incorporated into the letters dierently. Of the non-narrative moves, Requests for Information were not unexpectedly by some way the most frequent, particularly in letters with synopses. They tended to follow the account rather than precede it (63/ 92). The requests varied greatly in their speci®city. Some were very general; others more speci®c or highly localized: No. 199: Please send me whatever information is available regarding TMJ. No. 90: Is there a doctor rating service? If so, do you have any information on Dr.- ? As might be expected, pre-synopsis requests tend to be more general, and postsynoptic requests more detailed. Indeed, this pattern is quite evident in those letters that have the accounts straddled by requests for information. Here is one example: No. 38: Please send your newsletter and any other information. . . . I am scheduled to get braces on Fri & in one yr. to have jaw surgeryÐDo you have stats on the success of this operation? It's through U of M in Ann Arbor. Here we see the synopsis providing background information for a business-like request for information. This characterization is supported by the next two most common moves in synopsis letters: thanks/appreciation and dues/membership moves. The latter deals with the business of the TMJ Association, either that of sending in money for the annual dues or of initiating action so that the writer can
140
A.C. Ostermann et al./Language & Communication 19 (1999) 127±147
join, or by asking to be placed on the TMJ database8. There is only one letter among the synopses which contains neither request nor reference to membership business, this being a business-like thank-you note following up on a previous telephone conversation. The 23 instances of thanks/appreciations cluster at the close of the letters (20/23; seven are written as closing salutation). Most are simple ``thank yous'' but one is considerably more complex: No. 6: Your information is very helpful. I'm so sad that others suer. But it helps to know someone truly understands, it's not like having a toothache! Thank you for your report. The fact that there is only one such extended appreciation underlies again the business-like quality of much of this sub-corpus. This is also consistent with the low number and limited scope of ``oers''Ðtwo oers of extra donations and one oer for the writer's name to be used when contacting othersÐas well. Fourteen of the letters make reference to something that the writer has read, as in the following examples: No. 189: I saw your add [sic] in the Topeka Capital-Journal. No. 187: I read a note about your organization in American Health. As might be expected, in a clear majority of instances (11/14) these moves open the letters since they clarify the intertextual link to the TMJ Association. On the other hand, the fact that only 30% of the letters have this move does suggest that general knowledge about the TMJ condition is still not that widespread. Case histories, similarly to synopses, often contain requests. However, in the case histories they do not appear as simply providing background to a business-like request as do the majority of synopsis letters. Due to the lengthy nature of the case histories, the account-request ordering often gives the request the appearance of an afterthought, or at best a secondary concern. Further, there are four letters in which the writer never makes any sort of request or even reference to membership business at all. If these primary non-story moves are not the main purpose of writing, then another look at the case history moves themselves may shed light on what this purpose actually is. Looking back at the elements present in the narratives, we see that 43% of the writers of case histories mentioned their frustration and 60% described their pain, compared to only 16 and 27%, respectively, of the synopsis-writers9. This 8 Subsequent statistical analysis (Fisher's Exact Test, two-tail) showed that there was no statistically signi®cant dierence between the synopses and the case histories with regard to the proportion of individuals who requested information (p=0.08), who mentioned thanks/appreciation (p=0.09), who enclosed dues/applied for membership (p=0.20), or who had read about the TMJ Association (p=0.35). 9 The proportion of individuals who referred to frustration, or who described pain, was statistically signi®cantly higher in the case history group as compared to the synopsis group (Fisher's Exact Test, twotail) (frustration: p=0.006; pain: p=0.002).
A.C. Ostermann et al./Language & Communication 19 (1999) 127±147
141
might suggest that writers of case histories are approaching the TMJ Association more as a true support group than as merely a source of information. Rather than simply asking to join and/or asking for information, they are writing as if they are already members in the TMJ Association and as though this act of writing is already a communication aimed at invoking inter-member commiseration. This characterization of the case-history letters is supported by the thanks/appreciation move, which is almost as common as the request move in the same subset. While 13 of the 39 thanks/appreciation moves are a simple ``thank you'' or even ``thanks'' near or at the closing of the letter, the majority of these moves are more extensive and eusive, as indicated below: No. 13: Thank You both for all the hard work you go through to keep all of us out here who sometimes wonder if we can go through each day. . . . [more case history] But Terrie you've told me to keep pushing forward and I pray I will be able to.. . . Thank You again for all your encouragement, I really appreciate it±it helps me keep going when I don't feel I can. God Bless. . . 2.4 Agency in the two types of account Within the construction of narrative, language and grammar are essential resources for the expression of the self and of agency (Rymes, 1995). The way the individual shapes her own discourse and the lexical and grammatical choices she makes describe, to a certain extent, the way she sees the world which she lives in and the role she plays in it (Fairclough, 1989, 1992). As Rymes (1995) puts it: The grammatical and lexical choices made within narrative provide clues to the way speakers [or writers] structure their own sense of the self and agency as well as to how the members of a community, in turn, perceive and reconstruct that speaker [or writer] as an individual or agent. (pp. 496±7) In systemic-functionalist grammar (Halliday, 1985), and in linguistic semantics (Frawley, 1992) the thematic rolesÐthe roles participants have in processes or events are divided into two main groups: participant roles and non-participant roles. At the extreme of the former, we ®nd the agent role, which is de®ned by Frawley (1992) as ``the deliberate, potent, active investigator of the predicate: the primary, involved doer'' (p. 203). The role of agent applies to the participant in processes which entail, above all, volition on the part of the doer. In the other group, the non-participant roles, we ®nd more recipient participants, such as patient, experiencer, and benefactive. The role of patientÐwhich in this context has nothing to do with the term patient as used in the medical ®eldÐfunctions as the opposite of agent. As Frawley (1992) states, ``just as the agent is the primary executor of the event, so the patient is the primary recipient'' (p. 210). In linguistic terms, a patient ``undergoes, is changed by, or directly aected by the action of a predicate'' (id.). Benefactives, on the other hand, are secondary recipients; they
142
A.C. Ostermann et al./Language & Communication 19 (1999) 127±147
``derive actions or entities from the actions of another'' (Frawley, 1992, p. 215). These writer roles are represented in the narratives by such examples as ``Surgery was recommended to me'' (No. 119) and ``Please help me'' (No. 73). Finally, a writer whose ``internal state or constitution'' (Frawley, 1992, p. 213) is aected is an experiencer. In these cases, there is generally no action at all; instead, experiencers describe their physical, mental, or emotional states. Examples of experiencer roles of these letters' authors include: No. 129: I couldn't trust Dr. No. 85: . . . the[re] are still days I go nuts. Due to the debilitating conditions imposed upon them, our initial hypothesis was that the ``TMJers'' would not appear as agents in their own narratives as frequently as they tend to in other kinds of life histories. Rather, because of their frustrated experience with the disorders, we thought that they would portray themselves mainly as patients of other people's actions, decisions, and/or mistakes: No. 104: I was ®nally diagnosed by a doctor. No. 105: Dr. - took cartilage from my ear10. In a ®rst investigation, we therefore focused on agent and patient roles. We recorded all verbs assigning a thematic role to the writer or some part of her body in the account section of a randomly-selected subset of 40 letters: 19 case histories and 21 synopses. We discovered in the process that experiencer and benefactive roles were also common. Together these four types of roles account for 86.4% of the roles played by the narrators in their stories. (The remaining roles identi®ed were relational (3.7%): ``I was 16 years old'' (No. 77); ``I was in a car accident'' (No. 71); and ``having'' (6.6%): ``I had surgery about 10 years ago'' (No. 128); a ®nal 3.3% could not be reliably assigned to a role category.) As seen in Table 3, our expectation that there would be a high incidence of patient roles turned out not to be the case. In fact, the frequency in which these suerers appear as patients is very low, especially in synopses. Instead, the experiencer role ranks the highest, comprising 41.4% of all roles, rising to 60% in synoptic accounts. Rather than having things done to them, the writers mostly relate their experiences, both physical and emotional: No. 57: I am worried that I will starve . . . I'm awful desperate. . . No. 60: I have suered 15 years with this problem. . . No. 63: I . . . am in constant pain. 10
The ear cartilage was most probably used to replace the articular disc.
A.C. Ostermann et al./Language & Communication 19 (1999) 127±147
143
Table 3 Agency in accounts
Case history Synopsis Total
Agent Patient
Experiencer
Benefactives
Relational/have/other
Total verbs
27.4% 15.0% 17.1% 2.9% 25.4% 11.4%
38.3% 60.0% 41.4%
9.1% 2.9% 8.1%
10.2% 17.1% 13.6%
274 70 456
Since four of the ®ve elements we have observed in synopses are about the narrator's ``internal state or constitution,'' the strong tendency to refer to self in experiencer roles is unsurprising. As we have seen, synopses tend to open with a statement of suering, such as ``I suer from TMJ and have for the past 5 years,'' in which the writer is clearly in an experiencer role. Three other elements are also commonly expressed via experiencer roles: descriptions of symptoms, references to the pain, and expressions of frustration. Quite strikingly, and against our initial expectations, the second most frequent role after experiencer is the agent one, constituting 27.4% of all roles in the case histories and 17% of all roles in the synopses. However, the percentages do not show the whole picture. In fact, the dierence in positive agency between case histories and synopses is minimal; only 17% of the roles in case histories (compared to 16% of roles in synopses) occur in events in which the TMJ suerer is actually doing something. The remaining roles under agency are not ``real'' agency. Instead, they evince what we have come to call non-accomplished agency roles. In this sub-category we ®nd negated actions, intended actions, wishful thinking, and recounts of instructions received. The negated actions are processes the suerer is unable to engage in or carry out, as the excerpts below illustrate. . Negated actions: No. 82: I can't bite or chew well. No. 79: Unfortunately, I cannot add ®nancial support for reasons which I'm sure you understand. No. 86: I was scheduled to have my third TMJ orthoplasty but was so depressed I couldn't go through with it. . Intended actions/wishful thinking: No. 77: . . . I'm trying to move into some other kind of treatment. . . No. 83: I wish I could do more for myself because of the constant headaches. No. 73: Sometimes I want to rip my jaw o.
144
A.C. Ostermann et al./Language & Communication 19 (1999) 127±147
. Recounts of Instructions Received No. 129: He said . . . that I should call him on Monday to set up a surgery appointment. No. 77: . . . . they said that there wasn't much they could do to help my condition, they told me that I should get 8±10 hours of restful sleep. . . The prevalence of these non-accomplished actions in the case histories further distinguishes them from the synopses. In eect, the writers of case histories in fact devote much more of their narrative to detailing that which they have not done or are not able to do. This phenomenon neatly intersects with the earlier ®nding that writers of case histories are signi®cantly more likely to express frustration than are writers of synopses. A ®nal question is what residue is left to the ``real'' agency: in other words, what does the TMJ suerer do when she is an actual agent in her life story? Under real agency, we ®nd a participant engaged mostly in searching for doctors, information, and eective treatments; undergoing a variety of treatments; and explaining and reexplaining the symptoms they experience to each new specialist they visit. No. 102: Have been to UC, California, Stanford dentists of every kind oral surgeons too. No. 64: I have had splint therapy for years, physical therapy, gone to a chiropractor, took mind control, seen a neurologistÐyou name it. No. 65: I have been to more doctors than I can count. . . . I keep praying and searching for a miracle to relieve the chronic pain. . . . I have been on numerous muscle relaxers and I have been utilizing splint therapy for twelve years. As the examples above illustrate, these suerers do not represent themselves as passively as we ®rst hypothesized they would. But this real agency of the self becomes principally realized as the quest for relief. 3. Discussion We have seen that writers to the TMJ Association who included some sort of historical account of their illness utilized two basic strategies, and that the choice of strategy tended to ®t into an overall pattern: letters generally either appeared as business-like requests for information supported by synopses, or as support-group narratives in which writers told their problems in great detail to the one institution (and sometimes the one person) likely to believe them. The writers of synopses summarized the course of their illness, relying on the heavy weight of numbers to establish their legitimacy as suerers of TMJ in order to justify a request. In contrast, writers of case histories appear much more involved with the Association as support group, giving much more detailed narratives in which they discuss their pain and
A.C. Ostermann et al./Language & Communication 19 (1999) 127±147
145
frustrationsÐthe latter especially emphasized by a high incidence of unaccomplished agencyÐand thank the reader for ``listening''. The dierent types of account are thus eectively integrated into dierent types of letter, each account type being consistent with the overall tone of the letter in which it is found. This cohesion attests to a lucidity unexpected if the writers are hysterical women suering from some kind of ``neurosis'' as is sometimes suggested in the dental literature. Since writers of letters, unlike interviewees, impose their own coherence on their stories, we were able to ®nd a somewhat dierent approach to the illness narrative than that often found in the literature. In much of the literature on illness narratives, a focus on the eects of the illness on the patient is presented. But the TMJ writers often go beyond the standard descriptions of bodies stricken with pain, and how ``illness enters and disrupts biographies'' (Gordon and Paci, 1996, p. 390). We also ®nd an outward-looking stance as writers critique those aspects of the U.S. health care system which have failed them. Within this context, the chronic pain condition is presented within a matrix of frustration in which debilitating pain is only the beginning as writers often consider the scary issue of treatment by practitioners that are not quali®ed to care for them. Even worse is the question of insurance coverage for unnecessary and often exacerbating procedures. These complicating circumstances addressed in the letters broaden the scope of the negative eects of TMJ. In eect, the pain is only part of these illness narratives. Above we mention the terrible losses of TMJ patients including the loss of voice. In addition to having their condition go untreated, if not ill-treated, they also go unheard. The literature on institutional interaction/medical discourse has, for understandable reasons, concentrated on face-to-face interaction. The TMJ letters, however, show the potential role of re¯ective, written discourse in revealing the asymmetrical interactions between (largely male) health care providers and (largely female) patients. While probably not yet of any causative in¯uence, anthropological, sociological, and linguistic investigations are certainly symptomatic of slowly changing perceptions of what might be done better in the future. As previously mentioned, one of the most interesting ®ndings was the unexpected emergence of two types of account: a summative trajectory in the synopses and a cumulative one in the case histories. Because our research design excluded background information about the letter writers, we do not know whether the adoption of one type of account as opposed to the other would correlate signi®cantly with such factors as socioeconomic circumstances, level of education, or with the TMJ condition being perceived as deteriorating, stabilized, or ameliorating. One way of proceeding, therefore, would be to combine investigations of epistolary narrative with structured interviews of a sample of the population.
References Akar, D., Dowdy, J.D., Lindermann, S., Ostermann, A.C., Swales, J.M., TuÈrp, J.C., 1996. A linguistic analysis of patient letters to the TMJ Association. Preliminary results. The TMJ Report Summer, 2±4.
146
A.C. Ostermann et al./Language & Communication 19 (1999) 127±147
Atkinson, D., 1991. The Evolution of Medical Research Writing from 1735 to 1985: The Case of the `Edinburgh Medical Journal'. Unpublished Ph.D. qualifying paper, University of Southern California. Atkinson, D., 1992. The evolution of medical research writing from 1735 to 1985: the case of the `Edinburgh medical Journal'. Applied Linguistics 13(4), 337±374. Cowley, T., 1996. Personal Communication. De Boever, J.A., Carlsson, G.E., 1994. Etiology and dierential diagnosis. In Temporomandibular Joint and Masticatory Muscle Disorders. Zarb, G.A., Carlsson, G.E., Sessle, B.E., Mohl, N.D. (Eds.). pp. 171±187. Munksgaard-Mosby, Copenhagen. DelVecchio Good, M.J., Good, B.J., Fischer, M.M.J., 1988. Introduction: discourse and the study of emotion, illness and healing. Culture, Medicine and Psychiatry 12, 1±7. Dershowitz, A., 1996. Life is not a Dramatic Narrative. In: Peter Brooks (Ed.), Law's Stories, Yale University Press, New Haven, pp. 99±105. Drew P., Sorjonen M.L., 1997. Institutional Dialogue. In: van Dijk, T.A. (Ed.), Discourse as Social Interaction, Vol. 2, SAGE Publications, London, pp. 92±118. Dworkin, S.F., 1995. Behavioral characteristics of chronic temporomandibular disorders: diagnosis and assessment. In: Sessle, B.J., Bryant, P.S., Dionne, R.A. (Eds.), Temporomandibular Disorders and Related Pain Conditions, Vol. 4, Progress in Pain Research and Management. IASP Press, Seattle, pp. 175±192. Fairclough, N., 1989. Language and Power. Longman, London. Fairclough, N., 1992. Discourse and Social Change. Polity Press, Cambridge. Fisher, S. and Todd, A.D., (Eds), 1986. Discourse and Institutional Authority: Medicine, Education, and Law. Ablex Publishing Corporation, Norwood, N.J. Frankel, R.M., 1983. The laying on of hands: Aspects of the organization of gaze, touch, and talk in a medical encounter. In: Fisher, S. and Todd, A.D. (Eds.), The Social Organization of Doctor-Patient Communication, Center for Applied Linguistics, Washington, DC, pp. 19±54. Frawley, W., 1992. Linguistic Semantics. Hillsdale, NJ: Lawrence Erlbaum Associates. Garro, L.C., 1992. Chronic illness and the construction of narratives. In: DelVecchio Good, M.-J., Brodwin, P.E., Good, B.J. and Kleinman, A. (Eds.), Pain as Human Experience. An Anthropological Perspective, University of California Press, Berkeley, pp. 100±137. Garro, L.C., 1994. Narrative representations of chronic illness experience: cultural models of illness, mind, and body in stories concerning the temporomandibular joint (TMJ). Social Science and Medicine 38, 775±788. Garro, L.C.K., Stephenson, K.A., Good, B.J., 1994. Chronic illness of the temporomandibular joints as experienced by support-group members. Journal of General Internal Medicine 9, 372±328. Good, B.J., 1992. A body in pain: The making of a world of chronic pain. In: DelVecchio Good, M.-J., Brodwin, P.E., Good, B.J. and Kleinman, A., Pain as Human Experience: An Anthropological Perspective, University of California Press, Berkeley, pp. 29±48. Gordon, D.R, Paci, E., 1996. Narrative and quality of life. In: Spilker, B. (Ed.), Quality of Life and Pharmacoeconomics in Clinical Trials, Lippincott-Raven, Philadelphia, pp. 387±395. Halliday, M.A.K., 1985. An Introduction to Functional Grammar. Edward Arnold, London. Heritage, J., Sorjonen, M.L., 1994. Constituting and maintaining activities across sequences: and-prefacing as a feature of question design. Language in Society 23(1), 1±29. Hoey, M.P., 1979. Signalling in Discourse. Discourse Analysis Monographs 6. English Language Research, Birmingham University, Birmingham. Hoey, M.P., 1983. On the Surface of discourse. George Allen and Unwin, London. Howard, J.A., 1991. Temporomandibular joint disorders, facial pain, and dental problems in performing artists. In: Satalo, R.T., Brandfonbrener, A.G. Lederman, R.J. (Eds.), Textbook of Performing Arts Medicine, Raven Press, New York, pp. 111±169. Kleinman, A., 1980. Patients and Healers in the Context of Culture: An Exploration of the Borderland between Anthropology, Medicine, and Psychiatry. University of California Press, Berkeley. Kleinman, A., 1988. The Illness Narratives: Suering, Healing and the Human Condition. Basic Books, New York. Linde, C., 1993. Life Stories: The Creation of Coherence. Oxford University Press, New York.
A.C. Ostermann et al./Language & Communication 19 (1999) 127±147
147
Moody, D.G., Clark, G.T., 1995. Temporomandibular joint derangement with multiple surgical interventions. Journal of Orofacial Pain 9, 285±292. National Institutes of Health, 1996. National Institutes of Health Technology Assessment Conference Statement: Management of Temporomandibular Disorders. Journal of the American Dental Association 127, 1595±1603. Okeson, J.P., (Ed.), 1996. Orofacial Pain. Guidelines for Assessment, Diagnosis, and Management. Quintessence, Chicago. Pettinari, C.J., 1988. Task, Talk and Task in the Operating Room. Ablex Publishing Corporation, Norwood, NJ. Rymes, B., 1995. The construction of moral agency in the narratives of high-school drop-outs. Discourse & Society 6, 495±516. Sackett, D.L., 1979. Bias in analytical research. Journal of Chronic Diseases 32, 51±63. Salager-Meyer, F., 1990. Discourse ¯aws in medical English abstracts: A genre-analysis per research and text-type. Text 10, 365±384. Swales, J.M., 1990. Genre Analysis: English in Academic and Research Settings. Cambridge University Press, Cambridge. Tannen, D., 1989. Talking Voices: Repetition, Dialogue, and Imagery in Conversational Discourse. Cambridge University Press, Cambridge. Wodak, R., 1996. Disorders of Discourse. Longman, London. Wolford, L.M. Henery, C.H., Nikaein, A., Newman, J.T., Namey, T.C. 1995. The temporomandibular joint alloplastic implant problem. In: Sessle, B.J., Bryant, P.S., Dionne, R.A. (Eds.), Temporomandibular Disorders and Related Pain Conditions, Vol. 4, IASP Press, Seattle, pp. 443±447.
