Not niche: eating disorders as an example in the dangers of over-specialisation: commentary, Downs

Response

The arguments made by Haynos et al in their editorial ‘Not niche: eating disorders as an example in the dangers of overspecialisation’¹ highly resonate with my personal experience as a patient with a longstanding and severe eating disorder. The authors make several pertinent points about the link between perceptions of eating disorders as a niche field within research and the amount of funding available for research and clinical innovation, highlighting some of the possible reasons why. In addition to stereotypical and gendered views about eating disorders and the unique medical risks they may involve, the lived experience of people like myself can provide additional insight into how this overspecialisation is experienced clinically, as well as further potential reasons why. In turn, a broader array of solutions can be alighted upon for addressing the key barrier to equitable understanding and care provision that overspecialisation represents.

Haynos et al's focus on the interrelationship between eating disorders and other psychiatric concerns reflects the experience of people like myself who often have multiple co-occurring psychiatric conditions. In addition to the medical risks that the authors note, it is also worth stating explicitly that eating disorders are not disconnected from other medical concerns – and not just in terms of risks that result from the physiological consequences of eating disorder symptoms. Emerging research shows that there are many medical factors which may contribute to predisposing risk and development of eating disorders, or be in bidirectional relationship with them, ranging from genetic factors² and neurodivergence³ to metabolic⁴ and autoimmune conditions.⁵

In my lived experience as an individual who also has Ehlers Danlos Syndrome, I experience primary physiological problems as a result of my medical condition (such as gastroparesis) which have directly contributed towards the development and maintenance of anorexia and subsequently bulimia. It has been extremely frustrating to always have medical concerns seen as a secondary consequence or byproduct of the supposedly primary psychological problem – the eating disorder. I have often been told that ‘there is no point’ treating my physical health problems aside from in medical emergencies, as what is needed is to treat ‘the real problem’, which supposedly resides in my psychopathology. Yet, to take an example from my own experience, it is equally important to understand that features of malnutrition such as profoundly low potassium will change one's psychological state as it is to understand that psychological features may lead to eating patterns causing malnutrition.

At worst, the primacy given to psychology is not just a theoretical problem but has real-world implications in care, whereby my physical health problems have been left undiagnosed and/or untreated as a result of diagnostic overshadowing – sometimes for decades.⁶ This denies opportunities to unlock treatment targets which may be important in the maintenance of illness, as has been the case for me – opportunities which are made more remote by the way in which patients experience care for different components of their condition as ‘siloed’ between multiple specialties which often do not communicate well, or share responsibility effectively and safely.⁷

As such, the over-attribution of illness to psychopathology and understanding of eating disorders as situated within psychiatry alone might be usefully added to the harmful assumptions that Haynos et al rightly identify. The authors’ action-focused and ambitious solutions can therefore be supplemented to include a paradigm shift towards a greater centrality of the role of biology in our conceptualisation of eating disorders – that they are even less niche than proposed. This will allow for a greater range of relevant treatment targets and opportunities for recovery for people like me, where progress has been unlocked by giving greater weight to biological features alongside psychological support and understanding.

Lastly, although factors such as gender are important in understanding the harmful assumptions that confine eating disorders within a niche area,⁸ there are additional prejudices that are important to add to this work which extend beyond the demographics of those who might experience an eating disorder. For instance, assumptions are often made about the psychopathology of those with eating disorders which are not always accurate, evidence-based or helpful, including the idea that eating disorders are centrally concerned with control⁹ or that longstanding eating disorders have an inherent element of untreatability.

Intertwined with some of these ideas are well recognised and deep-rooted stigmas which play a key role in limiting the field. In my own experience, I have felt blamed for my condition, and been left with a sense of hyperresponsibiliation as a result of being told things like ‘You have to want to get better’, ‘You are demanding special treatment’ and ‘You are too dependent’ on the little care available. Although these are anecdotal examples, ideas that suggest that individuals are in some way not motivated, want to be unwell or are for some reason not able to get better would naturally make anyone question whether it is worth putting efforts into understanding or treating their condition.

In addressing these difficulties, centralising the role of biology can itself go some way to addressing pervasive stigmas that exist around eating disorders. Developing a more comprehensive and integrated understanding that brings together biological, environmental and contextual factors (including those not referenced here such as the food environment, education, food poverty and inequality) will help decentralise the notion of personal responsibility – and thus blame – over food and eating, including for those with eating disorders. I hope these factors together add helpfully to the authors’ efforts to move eating disorders from their current, overly confined niche – a confined space that only restricts the lives and opportunities of people like myself – and towards greater understanding, better treatment and lasting recovery for all.