The values of illness narratives

I attended an international workshop held at Ritsumeikan University in Kyoto. The theme of the workshop was ‘Challenges of Illness Narratives’, and it brought together a range of speakers who in one way or another work with/on illness narratives, including Professor Fernando Vidal at UAB in Spain. I decided to attend this workshop because effective use of patients’ account in medicine and its governance was one of the issues discussed at the workshop I organized in Edinburgh last year. Many of the talks were quite stimulating, and despite that I had to travel two hours by Shinkansen each way, I am glad that I did.

The workshop stated with Prof. Vidal’s talk, in which he examined the significance of narratives produced by patients of the Locked-in Syndrome (LIS). LIS is not a name of a disease per se but is a state that patients have a very restricted ability to communicate. For this reason, the narratives produced by the patients have been limited. They still can communicate with assistance of skilled carers who are capable of translating slight movement of such patients into letters and then into words. Now technology is being developed to censor biological signals in the body, instead of bodily movement, and transform them into expressions. It might be argued that ‘an autonomous self’ is not to be found in the body but in the network of people and technologies, of which the patients are also part. This (re)gained ability to communicate could potentially allow LIS patients to produce more narratives of their conditions and contribute to (social) construction of LIS. But at the same time, how they can produce such narratives may well be constrained by languages that are available to them – which might be informed by their cultures as well as medical knowledge. Prof. Vidal therefore urges us to be cautious about the nature of such narratives, if we are to use them as ‘reliable’ source of what it means to have the conditions. But why are they assumed to be reliable? Or more precisely, what makes them considered reliable? The questions about the quality of narratives and whether it makes sense even to talk about it then lingered in my head throughout the rest of the workshop.

The idea of ‘narrative medicine’ seems to make two key assumptions: first, medical knowledge is limiting in the way it understands a disease, and second, experiential knowledge of patients can to an extent compensate that limit. But if the latter is to be incorporated into the former, the narratives produced by patients need reflect adequately their experience. There was a talk in the workshop that discussed a methodology called McGill Illness Narrative Interview (MINI), and here the quality of narratives seems to be assured by the process of their production. Then, Prof. Akihito Suzuki of Keio University – a speaker of the workshop – told me that what is of interest for historians is the social background of narrative production, that is, the reasons of patients narrating their experience in the manners they actually did. So the quality of narratives may be understood as their informativeness. Yet, some other talks were concerned about how narratives shape patients’ identity, suggesting that narratives could reveal their struggle against a dominant discourse and might even function to counter it. A comment by Prof. Mitsuho Ikeda at Osaka University – another speaker of the workshop – indicated that narratives in this sense does not need be and often are not separated from medical knowledge. If social scientists are to represent the voice of the marginalized or the stigmatized, then the quality of narratives from this point of view is more to do with their rhetorical/symbolic significance, which may have very little to do actual experience of patients.

So, it seems to be that the quality of narratives are very differently conceived in relation to what they are supposed to do or what they are used for. This in itself is no surprise. What made me quite worried is, however, that little discussion took place in the workshop. If growing interest in illness narrative overlooks such differences, then an unfounded assumption that only patients have access to ‘the truth’ might get accepted uncritically. As Prof. Ikeda said in the workshop, working with illness narratives certainly requires one to be reflexive about their work.

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