- The Status of DocumentsMedical Files and Literary Genres-The Case of Chronic Fatigue Syndrome
Gaston Franssen’s essay touches on important medical and literary topics: the experience of patients with unexplained somatic complaints, the importance of giving their symptoms a name or diagnosis, the verbal representation of what bothers them, or the uncertainty all parties have to live with when an underlying cause of the symptoms is missing. A diagnosis or name such as chronic fatigue syndrome (CFS) can be a relief for its sufferers, as is expressed by one of the patients in the article: “I wept with relief at having a name for it.” Yet CFS is but a name for something that, medically speaking, has no substance except for the patients” complaints. CFS shares this lack of objective physical signs with other medical diagnoses. A diagnosis of migraine, for example, is purely based on the words of the patient by applying internationally agreed artificial criteria (IHS, 2018). The same is true for entities such as fibromyalgia, visual snow or epicrania fugax. One can call these: “invisible illnesses,” as Franssen does. The essay illustrates the ambivalence created by complaints that are expressed by patients but for which no structural or otherwise objective cause can be found. The ambivalence provokes a both medical (“not true, as there is no objective abnormality”) and literary (“words to be believed, but no evidence”) approach. The need for the latter is implied when one of the CFS patients in the essay states: “if they can’t find it in machines, it doesn’t exist.”
Here, the relation between literature and medicine at points resembles the relation between law and literature. One pivotal analogy is captured by the Latin phrase Quod non est in actis, non est in mundo: “What is not officially registered, is not in the world.” The phrase helps us to reflect on 1) the official or non-official status of documents in their relation to 2) the singular status of the world or the plurality of worlds. We will deal with both in the context of the diagnosis of CFS.
As for legal documents, Cornelia Vismann (2008) noted that the English terms “files” and “records” are captured in German by one term: Akten (cf. Latin actus).1 Yet in English, “files” connote the materiality of what has been registered, and “records” the function of what has been registered. This distinction helps us to distinguish more sharply, first, between the status of literary documents and medical ones, to then establish a [End Page 419] better possible relation between the two, also with regard to self-care. As for the singularity or plurality of world(s), this has principal ontological and epistemological implications. Law has to restrict itself to one world, namely the legally defined one: a matter of ontology. The restriction is needed to to be able to establish what counts as medically true or real: a matter of epistemology. Likewise, whereas literature, with the different genres it uses, always connotes a multiplicity of worlds, any medical diagnosis will have to restrict itself to one. It is only within this one world that possible or alternative explanations for any illness can be canceled out, to arrive at the proper diagnosis. What are the implications for self-care?
The Status of Documents: Genres and their Implications
Franssen distinguishes between illness narratives or medical case histories, on the one hand, and quest narratives, restitution narratives, biographies, memoirs, and autopathographical writing on the other. The former are based on medical interviews and tests. They transform into the medical files that contain the medical case histories. Their status very much resembles that of official legal documents, which fill the archives that form the heart of the legal system. As for the official medical files, these not only fill the archives of the medical system but could be taken up in the legal archives without much need of translation. If documented illness narratives and medical case histories are genres in their own kind, then, they have a radically different status than the literary ones.
The literary genres among themselves, moreover...