Following and filming Fibromyalgia
Anne Leonora Blaakilde and Maja Schøler

Introduction
The research project comprises an ethnographic study of persons suffering from Fibromyalgia Syndrome (FM) in order to understand different ways of handling health as a socio-material practice and performance. Our presentation deals with some of our considerations involved when filming by means of a video camera.

Maja begins by telling you about FM and the fieldwork and method. Then Anne Leonora presents our reflections about this and connects them to the intentions of the study.

Presentation of the case: Fibromyalgia Syndrome
FM is a chronic suffering of pain in muscles and bones. The diagnosis of bodily pain cannot be objectively measured and observed on the body; the syndrome is characterized by a non-verbalizable, bodily experience.
The Cartesian point of departure asserting a dualism between body characterized as a substance attributed by extension, and mind, perceived as a substance attributed by thinking, is still dominating in medical and generic understandings of healthiness and disease, and this dichotomous thinking creates various problems for persons suffering from FM syndrome.
One problem is that the FM sufferes do not achieve acceptance for their suffering, because the symptoms are invisible and practically unmeasureable, and because Fibromyalgia symptoms vary - not only from person to person, but also from day to day in the same person. To define what FM is actually about and how it comes around is therefore difficult.
Fibromyalgia has many side effects such as depression, colon irritability, restless legs, sleeping disorder, and cognitive problems. In sum FM is coined a syndrome, not a disease, since its characteristics do not entail to one specific organ or bodily part.
Hence suffering from FM comprises a very complex situation, difficult to grasp, and, unfit for the traditional Cartesian conceptualization. The reaction from the outside to the sufferer is therefore often: "But you look so good!" (Connotatively implying, how can you be in pain?)
In response to the difficulties of defining FM, a diagnostic method has been developed. It is called a "tenderpoint-test” and is an acknowledged method of testing 18 specific spots on the body while measuring the subjective pain effect in the person tested by the pressure of 4 kilos. If the person responds to this pressure with pain in at least 11 spots, she is diagnosed with FM.

We will now show a video spot with a woman being tested by the tenderpoint-test. The woman performs pain reactions to 18 of the 18 tenderpoints and thereby suffers of Fibromyalgia at a severe level.

Show film (2 min ca.)

Method
In order to study FM and the experience of bodily pain, the methodological work consists of three different ways of gathering material.
1 First, the ethnographer attended two hospital programmes with a total of 16 diagnosed FM sufferers, a two-week programme for eight women and a similar programme for eight men. Important for the fieldwork process is the close contact obtained between FM sufferers and the ethnographer during the two programmes, laying the ground for later personal interviews and filming. This is the participant observation part of the fieldwork.
2 Second, 5-10 qualitative interviews are conducted with different FM sufferers. The aim is to obtain knowledge about the situation for these persons and their suffering history, and to get a comfortable contact with the persons that the etnographer intends to film. The persons to be filmed will be chosen on the basis of the interviews, their situation, and the relation between the fieldwork interlocutors. This is the narrative part of the fieldwork.
3 Third, the fieldwork consists also of a filming session. The ethnographer intends to follow one or two persons suffering from FM for at least one day, while they are practicing daily life with their bodies in pain. The aim is to get both a sensitive and a discoursive knowledge about bodies in pain. The use of the video camera is the cinematic part of the fieldwork.
During fieldwork the persons revealed that a most common reaction to having pain, being tired, or feeling dizzy or depressed, is to isolate and hide away from other people. When these people interact in public life, they enhance their performance and try to look the best they can. Hence, the common response from the surroundings: "But you look so god!?" is comprehensible, though problematic for the FM sufferers, because it does not help them in getting acceptance for their suffering. Following a FM sufferer with a camera may therefore be understood as a transgression between the wish for personal integrity, yet it is also a good method when wanting to show to the surroundings that the FM sufferers are actually in pain.

STS and the camera as an actor
After the linguistic turn an appreciation of dissoluble thinking as a way to understand society, objects, situations etc. has characterized much theoretical work.
The idea with this paradigm is to break with boarders, authority, unity, logocentrism, and univocality. Words, texts, and discourses are foundational here. However, speaking about lived experience is not lived experience, but just one of more possible methods of trying to express experiences of living, and this is where the video camera becomes a central agent and tool in the present fieldwork

Within current ethnographic film-theory, there is a great interest in transcending the former priority of text, (Grimshaw & Ravetz 2009;xiv). There is also a renewed interest in phenomenological aspects with specific foci on senses and a sensuous ethnography (Stoller 1997, Bendix and Brennies 2006, ibid., Pink 2007). With STS, we attempt to encompass both 1) the benefits and reflections of a discoursive perspective 2) the sensuous awareness inherited in phenomenology, and 3), an interest in the various material network relations, the bodies suffering from FM are part of. An important agent in the present fieldwork is the camera as a technological artifact which influences social interactions. With the combination of discourse theories, phenomenology and STS, bodies and body boundaries are not taken as self-evident concepts; we do not necessarily speak of “the body”, “…but rather of a multiplicity of partial instantiations of bodies, whose interconnections are always tentative and never self-evident” (Berg & Akrich 2004;4). Drawing on Bruno Latour, we assume that bodies are constituted by being affected by other bodies, instruments, and experiences (Latour 2004).
When filming, the camera is seen as a tool through which to visually explore informants´ experiences of their bodies, for instance pain. At the same time it is an instrument that allows for a shared corporeal experience between the filmmaker and the filmed subject, (and maybe, also between the film and the audience) (Pink 2007).

Sarah Pink refers to Michel de Certau´s suggestion that the walking practice of everyday life involves a “process of appropriation” whereby movement creates a certain kind of contact between people (de Certau 1986;97, cf. Pink 2007;244). With a handheld camera as a corporeal extension of her body, the filmmaker is trying to follow the motion of the filmed subject with the filmmaker’s own bodily motions. By this, the filmmaker tries to encompass both the camera and the movements of the filmed subject as a kind of embodied experience, and hence, theoretically, the camera is inflicting a blurring of bodily limits in the filmmaker. At the same time, the filmed subject is aware of this “thing,” the camera, approaching her and transgressing the normal perceptions of the bodily sphere of personal integrity, creating a, for her, unusual situation. This might effect the practices and interconnections of both filmmaker and filmed subject, as suggested by Latour, so they interact in a kind of reciprocal relationship, both with each other, but also with the camera – and with their embodied experiences. In Sarah Pink´s words, this is a corporeal intersubjectivity (Ibid. 248), not indicating that the filmmaker and the subject experience the same. But maybe, in some parts of the body, the filmmaker, and even the spectator of the film, can experience a sensuous empathy with the body in pain in what Laura Marks, according to Grimshaw and Ravetz, has termed tactile epistemologies. Tactile epistemologies is ”..ways of knowing located in the body and senses that have been lost within conventional hierarchies of knowledge and theories of representation (Marks 2000; cf. Grimshaw & Ravetz 2009;134, note 36). An example of such a tactile epistemology is yawning, which often causes an unintended copying by one person watching another yawning.

We would like to show again a short cut of the film with the tenderpoint-test where the interaction between the camera and the filmed subject is very clear. In this cut, the embodied expression of the woman in pain did maybe, for some of you, as it did for us, causes a reaction entailed to a tactile epistemology. The spectator sees the bodily movements of pain, appealing to our tactile epistemologies, so we almost feel the embodied pain ourselves.

Show the film

As you will notice, the woman closes her eyes, when she feels the pain, as if she wants to isolate from interference or exposure. As she opens her eyes, she looks directly at the camera and comments on her own bodily reaction by saying: “I get tears in my eyes.”
The comment is unnecessary. It is obvious for the spectator and the camera that the pain causes tears in her eyes. However, if the camera was not pointing at her, she might not apprehend her own reflection of the situation. The comment is caused by the presence of the camera.
In a speech act theory perspective this kind of utterance is called a perlocutionary act (Austin 1962) which means that this is a speech act reaching out to somebody and canalizing an effect upon the receiver. It might even lead to an act of practice; for the filmmaker, it caused tears in her eyes, too, because the comment is directed to her and the camera. This is an example of a multi-sited interaction between the filmed subject, the camera, the filmmaker, as well as other factors, i.e. the assistant and her computer in the background. The transition is multi-sited. It contains a flow of embodied experiences between human and non-human agents, both by means of words – on a discoursive level – and by means of tactile, intersubjective transmissions of recognizable corporeal expressions.

We would like to make one final comment to this paper: Following the theoretical perspective of anti-categorical flux and fluidity, the intention with this study is not to reveal a certain explanation or unifying result. Contrarily, we try to achieve openness and a sense of uncertainty in the fieldwork process, precisely pointing to the theoretical standpoint that there are no unifying or essential solutions, but many suggestions, situations, and interpretations (Pink 2007; Grimshaw and Ravetz 2009). According to reception theorists like I.A. Richards (1923), Wolfgang Iser (1981), the more elements of uncertainty in a text – or performance – the more various and interesting interpretations are possible.