On 1st March I had the pleasure of giving a keynote presentation to the Irish National Eating Disorders Conference at Trinity College, Dublin. There was such a warm welcome, even if it did snow quite heavily on the morning of the conference, and it was brilliant the people battled their way to attend - such is the dedication and commitment of those working in the field of eating disorders!
Where to begin?
I was tasked with presenting a talk called, "Lived experiences of eating disorders: what the professionals need to know", and had an hour to do so. Easy! What could there be to say? No doubt after 20 minutes and a quick discussion we could go straight into the most important session of the day: the coffee break. Of course, I am joking - there is so much to say about this rich and complex subject that it was hard to know where to begin. I could only ever pick a few key subjects to hone in on and do justice to, peppered with elements of my own lived and living experiences as examples for the points I wanted to make.
So, where to start? Thinking of all the many ideas I wanted to include in my talk, I felt a bit overwhelmed, and had to take a moment to zoom-out, breathe, and try and comprehend which of these subjects to start with. Then I realised that perhaps zooming out was the best way to start. How can we answer the question, "what do we need to know about eating disorders?" without also asking, "what do we know already?" The answer to that question is where I began.
There is so much that we don't know
I think the most important thing we need to know about eating disorders is that there is so much that we do not know. There has been an historic paucity of research, especially amongst diverse presentations and groups, and so little of what is currently done in specialist services is evaluated or based on substantive evidence. When considering what we know about eating disorders, I like to use the analogy of a book. Imagining we have a 'book of knowledge' about what eating disorders are and how they can be treated, we have to remember that we are maybe a few pages in.
Beyond the current, limited knowledge that we have, there are many unwritten pages - about different presentations of eating disorders, how they relate to co-occurring conditions, about different cultural groups and populations, considering the role of the wider environment, education, socio-economic conditions and industrialised food production - to name just a few.
Living and working in a vacuum of knowledge
Many people live in this knowledge vacuum, which is distressing and can feel unfair when other conditions have been more of a priority to uncover knowledge about. Those people - like myself - may also face difficult experiences when encountering healthcare systems designed for those few who may be helped by these first few pages of the book, but may exclude others.
Professionals may also be at risk of missing hugely relevant characteristics of patients' experiences and important factors to consider in treatment when only focussing on what is contained at the start of this book. If we refer to this knowledge and think that "this is it", when we risk excluding or being excluded. In my own experience, the harms associated with this have been often worse than the suffering brought about directly from my illness.
Working with what we've got
So how do we move forwards with this? First of all we need to be really honest about what we don't know, and have a sense of humility. Whilst it can be really daunting for patients, and certainly for professionals aiming to operate effective services on a limited knowledge-base, with the unknown comes great opportunity. We can be creative in synthesising the current evidence base with clinical experience and a real attentiveness to the phenomenology of patients' individually unique subjective experiences. Clinicians must remember the incompleteness of where they are working from - even if this involves an uncomfortable process of unlearning how much they think they know.
Most importantly, the best source of evidence is always the patient in front of you in that moment. There are no randomised controlled trials the perfectly fit individual patients - deciding what to do in clinical practice is always a complex weaving together of the best evidence available and the needs of the ideographically unique patient:
Creating with, not imposing upon
The current lack of knowledge we have about eating disorders also gives us an obligation to collect data, to contribute to the evolving evidence base, and - vitally - to include patients and their carers in the process of coproducing the knowledge that we have. Too often, patients with eating disorders (and their carers) have explanations imposed upon them, and are offered ways of understanding their experiences of illness, treatment and recovery that they do not share. The "epistemic injustice" of not sharing in the process of deciding what is true about your condition can be redressed by sharing the power to create knowledge.
Who should be writing the pages of this book we need to fill out? Just the familiar voices, safe pairs of hands, guardians of the status quo? We need to be ambitious and perhaps also remember that this knowledge project may never be complete, and will always need renewal (let's leave our epistemology there!)
We start to create knowledge from the space between knowing and not-knowing
One thing I learnt from presenting at this conference is that it is OK to not try and be exhaustive and cover all bases - to expect yourself to fill out every last detail, all of the time. Learning is sometimes as much about raising questions, pointing to blank pages in our book of knowledge, identifying problems, and seeing it as tolerable and even valuable to do this - neither ignoring these vacuums in our knowledge, nor prematurely rushing to fill them in with haphazard solutions just for the sake of it.
It might even be that being equipped to deal with complex, imperfect and uncertain realities, as they are, requires us to be more able to exist in that space between empty and full.
What do you think?
Some references
Downs, J. (2021). Please see the whole picture of my eating disorder. bmj, 372.
Hart, L. M., & Wade, T. (2020). Identifying research priorities in eating disorders: A Delphi study building consensus across clinicians, researchers, consumers, and carers in Australia. International Journal of Eating Disorders, 53(1), 31-40.
He, J., Kang, J., Sun, S., Cooper, M., Zickgraf, H. F., & Zhai, Y. (2022). The landscape of eating disorders research: A 40‐year bibliometric analysis. European Eating Disorders Review, 30(2), 96-109.
Solmi, F., Bould, H., Lloyd, E. C., & Lewis, G. (2021). The shrouded visibility of eating disorders research. The Lancet Psychiatry, 8(2), 91-92.
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