Eating disorder treatment needs to inspire hope, not oversee decline
In my own episode of Full Of Beans, I talked to Han about my work in eating disorders as an expert by experience, including peer research and policy-making roles with the NHS. We discussed some of our frustrations with the ways eating disorders are currently understood and how this is reflected in the limited responses we have to the problems people with eating disorders face in managing their conditions. My own difficult experiences of lack of access to care - and poor standards of care when I can access it - can lead me to feeling despondent and sad about what this has cost me. But ultimately, I don’t believe that it needs to be like this, and my work comes from a positive place. Things can be different.
That doesn’t mean it will be an easy road to making sure that everyone at risk of or struggling with an eating disorder will be able to readily access the understanding and support they need. We need a multi-faceted approach that considers everything from prevention and the systemic and environmental drivers of illness to specialist, individualised care which targets mechanisms maintaining illness that we might not even have discovered yet. This is already a big enough task, without considering also the blaming attitudes within society that need to change, too, and the negative culture that sometimes exists within treatment settings that suggests that some patients are too unwell ever to change.
In my recent paper for the BJPsych Bulletin, I go into more detail in dissecting some of the problems that we face. For instance, a popular idea that has emerged is that eating disorders are in their nature progressive, or follow a staged model. The end-point of this stage is “terminal” illness, which follows “severe and enduring” illness. Attempts to create new categories of illness seems to be in-vogue, and my research discusses some of the pitfalls of creating new diagnostic subcategories which do more than simply describe illness, but use language in a way that incorporates ideas of intractability or inevitability into the very illness itself. I look at the word “enduring”, for instance, which is used in a way that runs the risk of people thinking that illness will continue, whatever help might be offered - that the eating disorder is enduring, not that it has been endured to this point and could yet still change in a way that leads to recovery.
Ultimately, there is no evidence to show that duration of illness or even severity of illness is a good predictor of recovery outcome. Too often, situating problems such as chronicity and severity within the illness itself can overlook factors that are just as important such as the chronic lack of care someone may have had to endure, too. The severe under-resourcing and under-researching of eating disorders are as important in explaining why individuals are unwell and find it hard to recover. We need to focus on these factors too, rather than resort to what can feel like blame, the denial of support, and the withdrawal of hope that recovery is possible even for people like me with longstanding severe illness.
Whilst my lived experience is incorporated into the paper, I am aware that these are only my own experiences and do not represent everyone. I hope nevertheless that my work helps broaden the conversation when it comes to understanding people with eating disorders who may not have recovered but still have the potential to, under the right conditions. We mustn’t write people off or give up on patients in services, who may already find it difficult to hold onto hope. When care too often oversees the decline of patients and is tightly rationed, we need to work towards transforming services so that they always instead point patients towards recovery, offering consistent and reliable support to get there, however long it takes. The door must always be open, and hope must always be held - for everyone.
I welcome continued dialogue on this subject and am always happy to be contacted with feedback, suggestions and ideas. Take care when reading the paper in light of the fact that it contains some details of my own experiences of eating disorders and healthcare. I can be contacted at firstname.lastname@example.org or via Twitter and Instagram at @jamesldowns.