Being a woman in my mid-twenties pursuing a PhD on the subject of anorexia nervosa, I am suddenly faced (more frequently than I would like or had ever anticipated) with the question ‘So, why anorexia? Do you have some personal experience of it?’
I hate it. It’s so rude. It’s so extra. It’s just infuriating. And it’s impossible.
There are three possible responses: some form of ‘yes, I do’; some form of ‘no, I don’t’; and some form of ‘I don’t think that’s any of your business and I’ll pretend you didn’t ask’. I have not yet come up with the ideal response. But here are some thoughts on the matter, ordered around the following lukewarm headings. This was supposed to only be a short thing but it sort of ballooned to 3,000 words until I stopped myself — hopefully before getting too ranty. I can’t promise it’s cogent or typo-free.
- Experience = Expertise?
- Revelatory = Revolutionary?
- Leading by Example
- Back to Me
What does it mean to say yes, to tell (a stranger, a colleague, a funding body interview panel, the readers of your next peer-reviewed publication, the public) your medical history, the details of your private life? What does it mean to say no, to deny, to separate yourself from them, those people, to refuse to take up a seat in that box? And for someone in the early stages of their career, what might be the consequences of rejecting, outright, the inquiry — would it be self-sabotage to throw your interrogator’s fuzzy ethics into sharp relief? If you hold a mirror up to someone’s poor behaviour, might it somehow reflect only you badly?
I think maybe these big questions are the wrong ones to begin with. Rather, first, let’s think about what it might mean to ask. After all, issues of mental health (in general, not just eating disorders) seem far more prone to probing, invasive questions. Perhaps this is a reflection of remnant Cartesianism: we expect a physical ailment to somehow give us clues to its existence, whereas what we call mental illness resides secretively, somewhere behind our eyes. Yet of course this is not true: so many physical conditions cannot be seen, and so often mental distress becomes visibly wrought on the body — perhaps especially in the case of anorexia, so often illustrated with evocative pictures of gaunt bodies inscribed literally to the bones with distress. So where do these questions come from, why the desire, indeed, the demand, to know such intimate details of someone’s life?
Partly, the question is understandable, particularly from the perspective of service users. There is often a deep and arguably justified mistrust among users of mental health services of research that either mines (perhaps exploits) vulnerable individuals for insights into particularly arcane life experiences or else presumes to speak authoritatively on behalf of a group who have not granted and do not recognise that privilege. So to know that a researcher has personal experience of whatever might be under investigation may help to assure research participants and service users more broadly that research has been (or shall be) carried out with empathy and in a sensitive, inclusive, non-judgemental way. But equally, it’s arguable that providing these assurances only reinforces an us-versus-them power structure, thus reiterating (rightly or wrongly) that research which sits at some remove from experience should be treated with suspicion. Moreover, it puts researchers who do have personal experience under some immense pressure to reveal that fact, apparently for the sake of their research methods. This surely drags us towards an ethically murky swamp regarding the right to privacy and perhaps also the extent of relationships between researchers and potentially vulnerable subjects.
But what about outside of the work itself? Every time I’ve had somebody ask about my personal relationship to eating disorders, they haven’t been a service user: I don’t work with service users directly, I work mainly with books — and they don’t usually talk back to me. It’s even harder, then, to understand what motivates this line of questioning when it occurs (as it so often does) as a query that’s separate and distinct from concern for service users. When it comes from someone I’ve met at a wedding, say (yes, this happened). Or from an audience member at a conference. Or (perhaps most tricky), when it comes from a colleague or potential colleague, from someone who might think about employing me in the future. When, presumably, in all of these cases, it’s pure nosiness.
By way of an outside example, I recently heard a radio show that’s totally typical of this frustrating phenomenon. It was a few days after Joan Bakewell had made her ill-judged and incorrect comments about anorexia and narcissism (for my own thoughts on this, see my Medium post here). Two speakers had been invited onto a weekday lunchtime programme to talk about what Bakewell had said: one was a woman working in anorexia research and the other was a man acting as an ambassador for Beat, the UK’s national eating disorders charity. The guests offered complementary perspectives (equally critical of Bakewell’s gaffe) based on their areas of expertise: either as a someone recovered from anorexia or as someone researching it. Partway through the interview, on live radio and apropos no hint of confession, the presenter asked the researcher to talk about her own anorexia, not about research. The woman was audibly flustered, caught off-guard: it seemed clear to me that she had not been expecting this question. Was this history something a producer had discussed with her beforehand, or was it the presenter’s stab in the dark? And the dark heart of the matter: were the researcher a man, would his gender have shielded him from such an ambush? I suspect it would.
In my own case, I can’t help feeling that I also face the question more because I’m a woman. Certainly, anorexia nervosa is diagnosed far less frequently in men, but to me this gender bias in interrogating my health status (or attempting to) is part of a continuum of behaviours revelatory of the expectation that women’s bodies and lives are not truly private and also that women are essentially weaker. From a professional standpoint, too, it bears a grossly insulting implication that women’s actions are governed chiefly by emotions: whereas a man researching anorexia is safely assumed as doing it for some obvious academic purpose, women are assumed to have a principally emotional motivation.
Is it really too much to ask that my research is read for what it is and not read as some clue to my personal life?
I also want to think about what it might mean to tell and reveal one’s personal experience by free choice (i.e. not after an interrogatory ambush on national radio or some other similarly coercive approach)? Plenty of people do do it, and there’s certainly a case to be made it favour of it. Experience of mental health difficulties carries stigma, and eating disorders especially so — so while on the one hand we cannot expect openness, there is great potential benefit from breaking the silence about mental health. Indeed, this forms a central component to a number of current campaigns, for instance Mind’s Time To Change initiative, which encourages people with experience of mental health difficulties to speak about them. According to Mind, this work has already begun to reduce public stigma. But the stigma isn’t gone — it’s still there, just maybe slightly less potent. And in particular circles and scenarios, being open about a past (or present) mental health difficulty might have negative consequences.
Experience = expertise?
Invoking your own experience as part of your expertise troubles some assumptions about knowledge and knowledge production. As Joan Scott writes in “The Evidence of Experience”:
When experience is taken as the origin of knowledge, the vision of the individual subject (the person who had the experience or the historian who recounts it) becomes the bedrock of evidence on which explanation is built. Questions about the constructed nature of experience, about how subjects are constituted as different in the first place, about how one’s vision is structured — about language (or discourse) and history — are left aside. […] To put it another way, the evidence of experience […] reproduces rather than contests given ideological systems (777).
So is work/knowledge/expertise about anorexia from someone without personal experience always inferior to someone who does have it? Does personal experience provide an edge, or some special insight? I don’t think it’s ever that clear or simple. I’m wary of suggesting it absolutely isn’t true that personal experience has anything additional to offer, but equally it seems somewhat slippery to say that having X, Y or Z experience contributes to someone’s authority as a scholar. And even if it does, wouldn’t that expertise — that additional insight, that remarkable empathy, whatever we think it might be — just be obvious? Or is the claim of authority by experience more likely to be invoked, or at least interpreted, as deliberate armour against criticism? Of course I’m not suggesting that anybody else who has taken the decision to be candid about mental health problems does so in a contrived attempt to bolster their arguments. But these kinds of disclosure might nevertheless work in that way.
Likewise, revealing a personal history of mental health difficulties is also fraught with danger. It requires opening oneself up to stigma, of risking having one’s work pigeonholed or prejudged — of the work being always already received through the lens of that disclosure rather than being seen through clear glass.
Revelatory = Revolutionary?
Something I’ve noticed — and I’m not the only one — is that saying “yes” to a history of anorexia is curiously transformative. Here’s one case in point:
Elspeth Probyn has written fantastic analyses of anorexia, particularly its relation to media and critical feminist theory on media. In her essay “The Anorexic Body” she makes passing reference to her own anorexia. This is done to illustrate some small point of rhetoric and not — her intention is perfectly clear — to transform the text from criticism to autobiography. Yet the inclusion of three small words explaining her personal involvement with the topic — ‘I became anorexic’ (202) has enormous transformative power: as if by magic — abracadabra, anorexia nervosa, alakazam! — Probyn acquires a label, a history, a fixed identity. And this yields criticism from at least two (in my opinion needlessly harsh) camps — for being too personal and for not being personal enough.
Can work be too personal? Probyn very finely describes this worry herself in a later essay “True Voices and Real People”, writing:
As I was writing my master’s thesis on anorexia nervosa, I carefully omitted the fact that as a girl, I suffered from anorexia. Now, my being anorexic did not bear very heavily on my thesis except that my experience of being anorexic drew me to that subject. Nonetheless, I felt that if my advisors knew, it might somehow invalidate what I was doing, and ‘drag it down to the personal’ (119)
Elsewhere, Probyn describes the contradictory reception of her work when she carefully, deliberately does not omit the fact of her anorexia. In “The Body Which is Not One” she recounts how an audience member for a conference paper she gave invoking her anorexia respond nervously to it, disconcerted by what he perceived as a rupture of proper academic discourse. Yet Probyn also tells of how, upon the publication of that same paper, she received harsh criticism for her failure to appropriately perform an account of anorexia. She writes:
[T]o return to the story of my body, following the publication of the conference paper, I was roundly rebuked by a feminist reviewer. Apart from what she called “my weighty words” of confession (the moment when I stated that I had been anorexic), my use of the body was condemned on the grounds that it lacked “sweat and blood” (Szekely 1988). Without being overly paranoid, it seems that my body can do no right: it makes postmodernists “nervous,” and certain feminists angry at my supposed betrayal of the empirical weight of the female body. (113)
This sort of criticism contends Probyn fails as a scholar, a feminist, and a former anorexic because her work cannot satisfying the impossible requirements for both detachment and identification. As illness narrative — it does not really come close to that — she falls short; does not provide adequately rich testimony of her illness, does not speak loudly enough, does not fully enough embody some idea of what anorexia is or does or could be narratively constituted. As pure scholarship, her work is read as improper, unruly — threatening, even: to a sense of decorum, familiarity, safety in the academy. Why else does nervousness arise?
There is also a third reaction, exemplified in one case by the eminent Arthur Frank, who fixed upon the words “I became anorexic” as if they were instructions to elide the text’s complexities, its powerful and sustained engagement in challenging dominant critical theory perspectives, and its overarching purpose as an insightful framework for conceiving of anorexia: he calls it, simply, a ‘confession of anorexia’ (Frank 148). Frank’s interpretation smears the line between scholarship and autobiography in a way that Probyn’s work does not ask for. This misinterpretation is precisely what’s at stake when thinking about how or whether to invoke personal history. Yet doing so is clearly important to Probyn, and to many other researchers, who keep personal experience at the forefront of their work.
Leading by Example
A few researchers spring immediately to mind, all women, all of whom relate their academic work to a personal history of mental health problems. First up is Professor Barbara Taylor at Queen Mary, whose experience of having been institutionalised in the late 80s at one of Britain’s most notorious asylums, Colney Hatch, becomes part of her historical work on British asylums (to great acclaim). Similarly, Dr Sarah Chaney, also at Queen Mary, has written about her experiences with self-harm as part of her research about the history of self-harm in Victorian Britain, including in her new book (which I have not read and which is not out yet, but about which I have heard tremendously positive things).
Going specifically to the subject of anorexia, Dr Emily Troscianko, at Oxford, has for several years written a blog for Psychology Today (titled A Hunger Artist) in which she discusses her recovery from anorexia alongside detailed discussions of current research pertinent to anorexia across a number of fields (psychology, neuroscience, genetics, etc.). She has also contributed to an edited collection of personal narratives about mental health and talked openly about it with me at a conference we both attended. Moreover, Troscianko situates her own history of anorexia as part of her expertise for her current research project on anorexia and fiction reading. Her candour is especially admirable considering the very high levels of stigma that are attendant to anorexia, and the possibility any revelation might backfire.
Back to Me
Despite the above — the good, the bad, the ugly (I’m looking at you, LBC) — I’m not sure I’m any clearer or more confident about my own position within this… debate? I’m still left with more questions than answers:
- If I do have the personal experience of anorexia people seem so eager to discover, revealing it would put me at risk of public and academic scrutiny. One truth might whet people’s appetites, initiate a desperate quest to understand the kernel of the anorexic experience (and I’m fairly certain there is no definite anorexic experience, even for a single person), as seen in the examples I highlighted from that radio show and from Elspeth Probyn’s career. What would happen, bad and good, if I claimed that experience?
- If I have a history of anorexia and I keep it a secret, am I derelicting some duty to speak up, speak out, carry the torch for anti-stigma campaigns just because I don’t want to get burnt myself?
- If someone asks me and I say “no” but really the answer is yes, is that lie justified? Is it ethical? So much is at stake here — and in particular so much stigma is attendant to eating disorders — that a lie seems defensible. But is it, can we say, do we know for sure?
- If someone asks me and I say “yes” but really the answer is no, that does not seem like a justifiable lie. And I would not do it if that situation applied to me (which is not to confirm that it doesn’t). But if I don’t have a history of anorexia, am I deceiving people by just not saying so? An obstinate silence from me on the subject might lead someone to conclude I have past experience (and perhaps therefore aclaim to expertise) that I do not. Omission is a form of lying, but is total honesty a reasonable expectation? Do we ask for, much less require, it in other settings?
- If I am researching and writing about anorexia experiences without claiming first hand experience myself, am I being exploitative? I can see how the work I do could be read as voyeuristic and me as some peanut-crunching, unwelcome literary interloper.
The questions are close to impossible to answer. But I do feel pretty confident now that it’s definitely not my responsibility to figure out how. It’s everyone else’s responsibility not to even ask.
Chaney, Sarah. The Psyche on the Skin (Reaktion Books – forthcoming)
Frank, Arthur W. “Bringing bodies back in: A decade review.” Theory, Culture & Society 7.1 (1990): 131-162.
Probyn, Elspeth. “The Anorexic Body” Body invaders: Panic sex in America. Ed. Arthur Kroker and Marilouise Kroker. New York: St Martin’s Press, 1987. 201-211..
Probyn, Elspeth. “True Voices and Real People”. Relocating Cultural Studies. Ed. Valda Blundell, John Shepherd and Ian Taylor. London: Routledge, 1993. 105-122.
Probyn, Elspeth. “This body which is not one: speaking an embodied self.” Hypatia 6.3 (1991): 111-124.
Scott, Joan. “The Evidence of Experience” Critical Inquiry 17.4 (1991): 773-797.
Taylor, Barbara. The Last Asylum
Troscianko, Emily. A Hunger Artist https://www.psychologytoday.com/blog/hunger-artist
Troscianko, Emily. “Dying By Inches” First person accounts of mental illness and recovery. Ed. LeCroy, Craig W., and Jane Holschuh. John Wiley & Sons, 2012.