Haunting and the ghostly matters of undefined illness

“I feel like I’m being stabbed by a thousand tiny men”: The challenges of communicating endometriosis pain

“…Similarly, Loftus (2011) advocates that metaphors constitute a way of understanding and dealing with pain, especially if such metaphors draw from meaningful areas of patient's experience (Gwyn, 1999) and they help the patient frame their experience of illness in different ways (Demjen and Semino, 2017). Overend (2014), also supporting the use of metaphors, suggests that they can be especially helpful in cases of undefined or invisible illnesses, such as endometriosis, as they help move "beyond realistic representations of illness experiences" and "help us to understand and articulate the experiences of undefined illness in ways that empirical accounts alone do not" (p. 66). Demjen and Semino (2017) also argue that avoiding the use of metaphors may "marginalize and potentially silence" those who find certain metaphors "motivating and helpful" (p. 392).…”

“…A way forward Demjen and Semino (2017) advise that what is required is: attention to one's own and others' language use; responsiveness to the feelings and views expressed by different linguistic choices; acceptance and tolerance of individual variation; and creativity in devising ways of harnessing the potential of metaphor as a resource for individual expression, explanation, sense-making and so on. (p. 396) Similarly, Overend (2014) reminds us that in so long as "ghostly" illnesses continue to exist and challenge empirical practices of diagnosing them, it is paramount to develop an understanding of their intrinsic prohibition for being accounted for that stops us from coherently speaking about them (Schott, 2004). Understanding will therefore enable those silenced by such prohibition to be visible "within positivist frames of visibility and locatability" (Overend, 2014: 77).…”

“…A very interesting and appropriate notion put forward by Overend (2014) in regards to undefined illnesses, and how they affect sufferers, is that of a "ghost." Overend (2014) argues that, due to the "empirical truths" that modern medicine searches for, illnesses with unclear pathologies become ghosts that haunt both the body of the sufferer and the biomedical practice (p. 63).…”

“…The notion of a ghost haunting the body is very relevant to endometriosis given that the disease possesses some of the characteristics of the "ghost" outlined by Overend (2014).…”

“…The locus of effective communication via co-construction, in Jacobson's (1960) terms, sits in the liminal space between the recognition and use of a shared set of common principles for accessing and collaboratively co-constructing meaning via a shared code. The challenges faced when communicating endometriosis pain are worth investigating given that a mismatch in assumptions where nuance of code, that is, metaphorical language, is being used, exacerbated by the increasing potential for being unable to decode metaphor usages in pain descriptors outside the expected frames of knowledge (Overend, 2014), can then give rise to miscommunication, potentially resulting in less than adequate or appropriate care. This may, in turn, affect whether sufferers are referred for diagnostic treatment in a timely fashion.…”