Thursday 18 October 2018

Illness Narratives: Interview with Maria Vaccarella

In this post I interview Maria Vaccarella on her latest project which concerns illness narratives. Maria is Lecturer in Medical Humanities at the University of Bristol. She works at the intersection of literature and medicine, and she is a member of the steering committee of the Centre for Health, Humanities and Science.

Her current research explores the genre of illness narratives, with a special focus on non-linear and non-triumphalistic plots. She is also interested in narrative medicine, critical disability studies, narrative bioethics, comparative literature, and graphic storytelling. Her current project is “Illness as Fiction: Textual Afflictions in Print and Online” and is funded by a British Academy / Leverhulme Small Research Grant.

LB: How did you first become interested in false accounts of illness?

MV: About two years ago, I was reading this article on health-related Internet hoaxes during my lunch break and had a lightbulb moment: these illness accounts, whether produced in cases of Munchausen by Internet/factitious disorder or as part of online scams, were an extreme form of the illness narratives I research and teach in my job as a Lecturer in Medical Humanities. 

This phenomenon has a printed counterpart in books marketed as memoirs and later revealed to be partially or completely fabricated. The best known example is probably James Frey’s best-selling memoir A Million Little Pieces (2003) on his alcohol and drug addiction, selected for Oprah Winfrey's book club in 2005, but later revealed to be only partly true in a tense interview for the same show.

As a literary scholar by training, I had many questions on the modalities of this form of self-narration, but they were inextricable from the psychological and often psychiatric aspects of the act of writing in question. This is how I devised my project Illness as Fiction: Textual Afflictions in Print and Online, as an interdisciplinary investigation of what counts as an illness experience nowadays beyond the clinical environment, without pathologizing, moralising or criminalising intents.

Credits: Julie Jablonski, Reflecting on Words CC BY-NC 2.0

LB: Do you believe that the opportunity most people now have to share personal information on the internet (via blogs and fora) has increased the occurrence and the influence of false illness narratives? Or is the internet just another medium for a pre-existing problem?

MV: I believe that some very elaborated hoaxes (such as Warrior Eli) can only be created and sustained online: they thrive on platforms dedicated to a specific condition or patient population, but at the same time require the corroboration of multiple social media profiles, which very often feature pictures uploaded on other, authentic profiles. 

I’m not sure whether access to the Internet will increase the occurrence or the influence of these false accounts in the long run, though some intricate form of Internet-mediated emulation seems to have played a crucial role in Belle Gibson’s case: apparently, she drew great inspiration from the online success of (real) cancer patient and alternative treatment advocate Jessica Ainscough– in the words of Beau Donelly and Nick Toscano, “For years before Aisncough’s death, Gibson was positioning herself as the next poster girl for holistic health and wellness. And the template she used in her story followed a similar path.”

So, this is a phenomenon that precedes and goes beyond the Internet, but its classification as a “problem” is quite complicated. Online fake illness stories with lucrative aims or promoting ineffective, possibly lethal, treatments are, of course, a problem. But, as psychiatrist Marc Feldman has written in his latest book on Munchausen by Internet Dying to Be Ill (coauthored with Gregory Yates), “It is not illegal to steal someone’s sympathy.” 

The abovementioned Warrior Eli case provides, for example, a perplexing moral conundrum: the woman behind the false story of Wilm's Tumor patient Eli didn’t make any money out of it or discredit evidence-based therapies – on the contrary, she encouraged her many followers to donate to a real charity.

LB: As you know, we are especially interested in mental health at Imperfect Cognitions. Do people provide false account of mental illness or mental distress? Is there any example you could tell us about?

MV: False account of mental illness or mental distress are not as frequent as accounts of physical illnesses, but there is a whole chapter in Feldman and Yates’s book on what they call “mental masquerades”, the paradox of disguising a real mental disorder, i.e. factitious disorder, through the features of another mental condition. 

Given your work at Project PERFECT, you might be particularly interested in the section on feigning amnesia and dementia. In print, too, there are some interesting examples, such as Kim: Empty Inside (2010) – the alleged memoir of a teenager with anorexia, in actual fact written by Mormon youth counsellor Beatrice Sparks – or Lauren Slater’s Lying: A Metaphorical Memoir (2000), an elusive autobiographical account of a multifarious mental illness, aimed at challenging the concept of reliable diagnoses tout court.

LB: Project PERFECT focuses on cases of false or irrational belief that have some hidden or obvious benefits. Have you encountered false accounts of illness that have benefited the narrator in some way?

MV: Very difficult question! You could claim that for better or worse, the controversy around the fabricated nature of most of his book benefitted James Frey’s literary career, but is that a real benefit? 

Of course, in cases of factitious disorder, the patients performing the sick role in a persuasive way (to the point of self-harm, at times) are definitely benefitting from the sympathy and attention they seek so urgently for a certain period of time. I guess, in some cases, factitious disorder can function as a coping mechanism, but not free from unethical traits.

LB: Your research spans literary criticism, medicine, psychiatry, and psychology. What have the advantages and challenges of interdisciplinarity been for your project?

MV: Fake illness narratives are a literary, psychiatric, when not criminal phenomenon – hence, it would be just impossible to learn more about them, by limiting oneself to the knowledge and tools of one specific discipline. But I know all too well from my experience in the medical humanities that having similar research interests does not automatically ensure fruitful collaborations. 

This is why my project includes three participatory workshops, in which not only do we hear about experts’ latest research on the topic, but we also analyse together a selection of texts – each participant from their own disciplinary point of view, regardless of academic hierarchies. 

And I’ve received positive feedback on the experience of working together – the MA student alongside the emeritus professor – on a genuinely puzzling piece of writing. I believe that seeing different expertise and methodologies at work on a few specific examples unleashes the potential of interdisciplinarity in a particularly lively and tangible way.

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