I went for an eye test earlier this year. As the optician checked my details from my last appointment – and noticed, presumably, the words ‘PhD student’ next to ‘occupation’ – he asked what I was writing my PhD was on. When I replied that I was working on ‘medically unexplained’ illness, he stopped scrolling on his computer. Leaning back in his chair, he looked directly at me and, with eyebrows raised, asked: “If it’s medically unexplained, is it really an illness?”
I was not surprised by this. Since I started my PhD, discussions of my research topic have prompted a number of reactions like this one, which have ranged from vague scepticism to open ridicule. Much more common, however, have been entirely different responses: so many people have been prompted to tell me about their own experiences of these complex and poorly understood illnesses – or those of friends, family, or acquaintances. These accounts have differed in content and context but they have all detailed deep suffering, caused not only by their severe and disabling symptoms, but also by being disbelieved, judged, and unsupported.
These diverse reactions speak to the stigma that surrounds these ‘medically unexplained’ illnesses and the impacts of this stigma. It was this stigma, and its associated shame, that was the focus of my doctoral studies on these ‘medically unexplained’ illnesses.
These illnesses – in which symptoms persist but an underlying disease process cannot (yet) be identified – are highly stigmatised. This is recognised across the academic literature and it was also acknowledged in both the memoirs I analysed, as well as in the semi-structured interviews I conducted. Depictions of stigma in the memoirs I studied played with definitions of stigma as a mark – or a brand – made upon the skin. For example, Julie Rehmeyer writes, in her memoir Through the Shadowlands, of the ‘stain of stigma’ associated with the diagnostic label ‘chronic fatigue syndrome’. These authors typically present this stigma as no coincidence, making visible both the staining mark as well as the processes – or, indeed, people – that made it so. In her memoir Encounters with the Invisible, Dorothy Wall describes the stigma associated with ‘medically unexplained’ illness as ‘an unexpected, often unrecognised’ side effect of technological biomedicine. Medical technologies, she writes, ‘create a hierarchy of patients, with those at the top, who can brandish clear evidence of disease, graced by medical acceptance, and those at the bottom who can’t, tainted by medical distrust’. Tainting, staining: these terms reoccur throughout these memoirs, evoking stigma in terms of bodily marking.
My interviewees spoke of stigma not through metaphor, but rather as something that impacts their everyday lives in painful and potentially dangerous ways. They discussed hiding their illness, and the labels associated with it, from their family and friends – even though this made them yet more isolated, and further limited possibilities of being supported or comforted. It shaped, too, how they felt about themselves; one of my interviewees told me, in response to a question about how this stigma impacted her life, that ‘you really feel like a failure sometimes, when you’re not’. Another told me that, even on the rare occasions that she felt well enough to leave the house, she was prevented from doing so by the ‘severe anxiety’ that resulted from ‘constantly feel[ing] judged’ by other people. A number of my interviewees felt that this stigma was the reason they had received poor treatment from healthcare professionals, such as delays in receiving co-morbid diagnoses. Three told me that, as a result of this, they now avoided all contact with healthcare professionals – even when they had developed new, concerning symptoms.
However it was expressed, it was abundantly clear that stigma was a pervasive force in these women’s lives – but it was less clear what its causes were. Academic work on stigma has been criticised recently for focusing on (as sociologist Imogen Tyler puts it) ‘individual experiences of being stigmatised in ways that occlude an understanding of stigma as a material force, a structural and structuring form of power’. Stigma is evidently functioning as ‘a material force’, a ‘form of power’, in this situation, as those with ‘medically unexplained’ illnesses are marked out as different – and, critically, as lesser than – by their collective inability to ‘brandish clear evidence of disease’. But why is the case? What is driving this? And, perhaps most pertinently, who benefits from it? Carol-Ann Farkas writes that ‘nothing is more intolerable than an illness which has no distinct, discernible, unambiguous mechanism’. Could it be that stigma absolves us, collectively, of the necessity to tolerate these ‘medically unexplained’ illnesses – by pushing those who live with them both out of sight and out of mind?
Dr Katharine Cheston, Honorary Fellow of the Institute for Medical Humanities (Durham University) and Visiting Scholar of the Shame and Medicine project.
16th December 2024
Photo by Ondrej Supitar on Unsplash