The findings below are derived from analysis that focused on identifying occasions when matters of trust come to the fore but are not necessarily made explicit. Although selective, the data are drawn upon to propose that trust, and associated terms such as mistrust, can be conceived of as qualities of the relationship between actors rather than things in themselves [41]. Whilst this necessarily implies trust is inherently subjective and situated, it opposes locating it either solely ‘in the head’ or as a feature of the external world. Rather, the data presents accounts of how people work to make sense of, and experience, their own position within a set of relationships, and how in this process particular actions can emerge as ones that convey trust as a quality of those connections.
Connecting bodies and people
Some people diagnosed with diabetes don’t seem to ever find a way to accept this new status, and establish a self-identity that accommodates, rather than resists, the condition. It is as though they are adrift, uncontained, and resolutely contest the idea of having to address the condition on their own. This was the case for Mary. She has Type I diabetes, but her mother has Type II. They invariably come to the clinic together, although of course are not seen together by a doctor. Nevertheless, the dynamic of mother and daughter is very strong, and shapes the consultations they both have. The relationship between them is undoubtedly complex; the father left the family almost a decade ago. The daughter has had poor blood glucose control for many years now–probably since she was diagnosed as a child. Although not yet diagnosed with a psychiatric condition, it is likely that she will soon also be referred for psychological help. Meanwhile, her eyesight is deteriorating due to retinopathy, and she has started to have ketoacidosis attacks and be admitted on and off as an emergency inpatient. The consultant wants the daughter to take control, to ‘own’ the condition, and to stop what the doctor called her ‘reckless behaviour’. Regular self-monitoring and insulin adjustments would hopefully lead to greater coherence and integration into her everyday life; he is concerned that she might find herself caught in a never-ending cycle of very poor control and hospital admission. So he asks her:
Dr: What do you think the best thing to do might be?
Mary: Get my mother to leave me alone
Dr: But surely she is trying to help you… make sure you are ok, and control your diabetes?
Mary: I just think she should worry about her own diabetes, not mine. I’m ok. I know what I’m doing.
Dr: Do you? I mean, your HbA1c results are not good, Mary.
Mary: No, well. That’s not the whole story, is it? There are more things to worry about than a one-off blood test.
Mary’s words not only suggest she is caught in loops of uncertainly and distrust in relation to the health service and health care professionals, but that she is also questioning whether or not she can trust her mother. On the one hand, she responds to the consultant’s first question by rebuffing the influence of her mother’s apparent stifling concern. Yet almost immediately afterwards, Mary rejects the idea that her diabetes management can be assessed by a single blood measurement (the HbA1c result), since to do so would disregard the ‘whole story’ of her distress and that the illness is constituted by multiple relationships. As the exchange continues, it is clear that for Mary the notion of being ‘out of balance’ , as she put it, is a diverse and wide-ranging state rather than one that can be attributed solely to her glucose levels, and that what she really seeks is a much broader feeling of things being settled, in which she, and her own body, are positioned. From her perspective the condition arises not merely from her internal physiology, but from an entangled network of diverse elements which all affect her sense of constancy and balance–and it is potentially all of these that can play a role in her sense of stability.
This then, invites one to rethink the notion of self-management of diabetes–that in practice this means management of a wide variety of relationships. In the context of diabetes, practices of trust consequently relate to the need to establish a feeling of stability, rather than empirical evidence of it, across many different kinds of relationships in order to counter feelings of vulnerability or uncertainty. In this way, trust describes a relational quality that emerges from interaction. And while it is always made, or unmade, in the present, its effect is to appear not only as something that will endure to potentially shape future interactions, but just as significantly can be extended backwards, to refashion how past experiences are recalled and brought into association with the present.
The effects of not saying
In real-life clinical settings, it is often the apparently superfluous or ritualised elements of social interaction that are most relevant, since they function to establish a level of sociality that is independent of the specific medical content that may be imparted. As well as what may be said, it can also be what is not said that engenders a sense of trust. For example in the following exchange between a consultant and John, a 49 year old patient with Type II diabetes, the utterances from both parties could be said to be quite scripted:
Dr: So, tell me how things have been going. How has the diabetes been?
John: Fine, ok I suppose.
Dr: Good… I mean, anything been bothering you… Any problems?
John: …No.
Dr: No. Well. Good. I mean, are you sure?
John: Yes.
Dr: Oh, OK then. Good.
[PAUSE]
But amidst this ostensibly mundane excerpt a lot is implicitly going on. The doctor is trying to gently encourage John not only to feel at ease, but to be frank and honest with him, whilst the patient is reluctant to make himself more defenceless than he already feels. As a result, the doctor, having asked a second time, decides not to press any further. Following this short exchange there is a brief pause, which serves to confirm the significance of something which was not said. The short period of silence establishes a shared secret between the two, since neither decides to instigate anything further. Instead, the conversation turns to the more technical matter of insulin dosage. But by each allowing the pause in conversation, a kind of acknowledgment of the other person’s position is intimated, and a sense of mutual trust based on difference, rather similarity, is established.
If prompted to talk explicitly about trust, respondents like John seldom offered an immediate summative response, but instead recounted one or two particular incidents or interactions from which they then made some sort of evaluation, to themselves as well as myself as the researcher. So when asked in what ways they trusted (or did not trust) the doctor that they had just talked to, patients would often focus on particular things that were said, or actions that were taken, as indicative of a more general and distributed feeling of trust. In the following excerpt, for example, a female patient who had just met a new consultant for the first time, draws on some material objects that she felt were instrumental in being able to establish, retrospectively, the nature of the relationship she had with the doctor:
Thinking about it now, I didn’t trust him at the beginning. I looked over on the desk, and instead of my notes, which usually consist of a really thick pile of papers from all the years I have been going, there was just a small brown A4 folder… with maybe just a couple of sheets of paper inside… I think that being so surprised by that folder really affected how I spoke to him [the doctor], and perhaps even what I said about my diabetes.
The lack of extensive notes is contrasted with the usual bundle of paperwork–and in so doing calls attention to the regular expectations and network of ways of doing things, and an interruption to a sense of familiarity and continuity. Clearly, for this patient, an established opinion on whether she felt her relationship with the doctor was a trusting one or not did not really exist beforehand. Only following a prompt during the interview did she actively reflect upon things; while recounting the apparently minimal paperwork the presence of the thin folder itself intervened in her assessment of the nature of her relationship with doctor. The more general point is therefore that trust is commonly an aspect of social life that is not articulated, whether to others or even people themselves. In order to talk about trust at all, assessments are made of particular events that, at the time, may not have felt noteworthy. Describing what was done or not done, as well as what was thought or said, is in parallel a process of specifying the quality of the connections that comprise the specific practices.
Actions of deception
Perhaps surprisingly, one of the range of actions that falls within trust practices but would be excluded from a study that adopted a more objectivist approach is that of deception. Dishonesty is quite a common feature of encounters at the clinic. From the medical professionals' perspective, because the underlying imperative is to try and ensure the patients’ relationships with the clinic and staff members are durable, they will often tolerate such acts because there are ‘there are bigger things to worry about’. Meanwhile, since patients often feel that it is not their diabetes that is being assessed but they themselves are being morally judged, they adopt various defence strategies.
For example, the task of self-monitoring is often one that many patients do not do as regularly as they are advised to. Nevertheless, they often feel it is important to try and please their doctors and nurses, and as a result, sometimes fill in the blood glucose diaries just before an appointment. In fact, some become quite sophisticated at this–even (so they told me) allowing tiny drops of blood mark the paper to further suggest the authenticity of the record. On one occasion, I asked Sue, a patient with Type II diabetes who now uses insulin after being on oral medication for many years, directly about this:
Me: But surely, isn’t the diary in the end just to help you, to help you see whether your medication is keeping your glucose levels stable and low?
Sue: I suppose. Yes. But I have my own ways to do that. The diary thing, well, they asked me to do it, so I don’t want to disappoint them…
Anyway, I naturally didn’t say anything to anyone about what she had said, and her trick of using a blue pen and a black pen alternately to fill out the diary. On a separate occasion, however, a nurse specialist at the same clinic spontaneously told me that she, and everyone else working in a diabetes clinic, often did not believe a patient really had completed the dairy legitimately. She told me ‘they weren’t so easily duped’ and that ‘you cannot trust those’–perhaps deliberately leaving the statement ambiguous as to whether she was referring to the diaries of the patients. The nurse went on to tell me that invariably there would be specific clues–the form of the writing, the measurements themselves, and so on. So I asked her why she never challenged patients when suspected this. She replied:
That would just be too damaging. We carefully build up relationships with patients. We don’t preach at them, we go at their pace, we build up trust… And anyway, the diary is meant to be for them. We use HBA1c to assess glucose levels–it’s far more accurate. And objective.
The diary not only serves as a means to produce and maintain the fiction that self-monitoring is being conducted regularly, but is drawn upon by both the patient and the health professional to maintain a sense of commonality, even if both sides know it to be fake: for either of them to reveal this ‘secret’ would be too destructive. In this way, a broader sense of trust emerges from the specific configuration of deception and mistrust.
Accounts such as this not only illustrate how the scope of trust practices must include a range of related terms, because they all in different ways infer what form of trust emerges from the interactions between people and things, but also that apparently contradictory practices can, from different perspectives, engender (or undermine) the emergence of trust. Thus, beyond acknowledging that trust cannot be conceptualised as an object or resource because it is inherently a relational quality that always emerges from very particular configurations, on any occasion new elements might be foregrounded, while others recede. As a result, conceptualising the quality of trust as being constant or fixed not only ignores the possibility that at any time it can radically alter, but that this experience of precariousness is itself one that engenders trust as a stabilising feature.
Threats of betrayal
Jane had thought that she was, in her words, ‘a good diabetic patient’. By that, she meant that she monitored herself regularly, and had a sufficient understanding of the biomedical model to allow her to dial up and alter different doses of the fasting acting and slow acting types of insulin she was on. However, after an HbA1c test, which give average blood glucose levels over the previous three months or so, it transpired that her control was not nearly as good as she had thought. At first she doubted the HbA1c figure, but her doctor emphatically told her it was reliable and now the standard way they measured glucose control. So if Jane wanted to trust her doctor, she also had to trust this test result. Jane paused for a short while, and then suggested that perhaps it was her electronic glucose meter that hadn’t been working properly, and that although she had done everything ‘correctly’, it may have consistently given false readings. Her doctor was clearly not convinced; he conceded it was ‘possible’, but he said this in such a way that it was clear he really didn’t accept it as a reasonable explanation. Jane sensed this, and that the doctor was starting to get a little frustrated. So she tried one more time to protect her status as being someone who was good at self-management not only to the doctor, but herself also, and began to ask if one or both of the insulin types could somehow be contaminated, or of an inferior strength. But her voice trailed off as the doctor started to shift in his chair, now a little agitated that Jane was not accepting, from his perspective, the reality of the situation. Finally, Jane said the following, while she gently rested her hand on her midriff:
Ok. Well, I still don’t understand it. I did everything that I was meant to. I managed really well, as you know. But perhaps it’s something to do with my pancreas or something. Maybe my body is, you know, misbehaving or something. Maybe it’s my pancreas…
In the course of the exchange and Jane’s concluding speculation, the fact that the puzzling test result was inescapably nestled in a number of other trusting relationships that she did not want to have undermined, forced Jane to work through an account in which she could preserve what was most important. As different possibilities are brought to the fore they are experienced as potentially competing with others; attributing trust to one relationship required the severing of trusting relationships in others. The exchange itself was a delicate choreography, as new possible actors were introduced by the patient only to be cautiously dismissed by the doctor. Finally, blaming her own body may well have been a somewhat linguistic flourish–but it nevertheless served as a way to protect the trust Jane valued elsewhere. For her, living with diabetes is far from being simply about her pancreas, and that ultimately losing trust in her body became a strategy to preserve a sense of trust in other things that she experienced as even more fundamental to her condition.
This last ethnographic example illustrates the fact that trust practices can enlist a wide range of entities–people, institutions, material objects and even one’s own body–and that one cannot assume which entities are necessarily more significant in a particular configuration than others. Trust is not contained simply in the person, but arises from the specific distribution of all these things. Further, the potential combination of such diverse elements is experienced by people such as Jane as a fluid landscape that can be creatively drawn on to make meaning, rather than existing as a stratified hierarchy which dictates some kind of logic. As a result, any sense of trust is always ephemeral, since it is contingent on the particular elements brought to the fore.