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Marching to change minds about eating disorders: my speech for the #DumpTheScales London march

This blog post is a fuller version of the short speech I gave in London on Saturday 27th April as part of the 2024 #DumpTheScales march for eating disorders.



Hello and welcome, everyone!


First of all, I want us to say a big thank you to Hope Virgo, who has brought us together today for the #DumpTheScales march, with such determined, relentless, and generous leadership. Without Hope this wouldn’t have happened so she deserves a big round of applause. And I think it is also important to recognise that it mightn’t be easy for many of us to have come today - and perhaps we shouldn’t even have had to come - but to give ourselves a clap for making it, despite everything, to march for a better future for people with eating disorders.


The #DumpTheScales campaign has some specific asks around policy, funding, and care for people with eating disorders. One of the points that I want to make today is that whilst these are so important, and long overdue, the changes we need to see aren’t just about money alone. Putting money into the same old things, that might not be working, isn’t enough - this is also about changing minds. We desperately need to change outdated and inaccurate narratives about eating disorders, and the culture of denial and harmful attitudes that still exists across policy, healthcare and society today.


In my own experience as a patient, I have seen at close hand the kind of ideas that too often say that we patients are the problem, rather than recognising that the most pressing problems of all are to do with the systems that should treat us, the ways we are understood, and the knowledge and treatments we have - or don’t have - for eating disorders.


These ideas say that we are too complex, when we are too complex for the reductive understandings and limited treatment options we are offered. They say we are untreatable, when the vast majority of the time many of us have experienced a healthcare system that has been unable - or unwilling - to treat us. These ideas say we are to blame for attention seeking, or being overly dependent, or needing too much. We don’t need too much care - we need too much of the care that is available.


There is nothing wrong with seeking the attention we need. But there is everything wrong with starving people of the care they need, purging people of the dignity we should all be afforded when unwell, and restricting the opportunity to live life in all its fullness - or to live life at all - for people with longstanding and severe illness.


I think these kinds of ideas are ways to project service-provider problems into patients, to deflect from the painful reality that many clinicians experience of not being able to provide the care they want to by saying it is the patients and features of their illness or personalities that are to blame for the problems we face. I am not saying everyone with lived experience encounters these ideas in their care, but they do exist and they do need challenging. I am not saying either that clinicians are bad or deliberately harming people or withdrawing care, but the professional voices advocating loudly and publicly on our behalf are not loud or plentiful enough.


Some people in authority even shout down people who raise concerns, protecting the status quo which fails so many. This is even when so much of the progress that has been made in eating disorders has come from people with lived experience saying, “this isn’t good enough - let’s do something about it, and we want to help you”. By being here today and demanding better, we are being generous with our experience, and we will be marching in the face of difficulty with dignity and grace.


This movement - our movement - is called #DumpTheScales. As well as dumping the scales that restrict access to treatment based on weight status, we need to dump the scales that weigh up who is deserving of treatment. We need to tip the balance from focussing overwhelmingly on the deficits of patients to considering the gaps and weaknesses in the safety net and treatments that should be there for us.


The reality is that we don’t know what this treatment should look like, for everyone, and the knowledge gap for what treatments work for whom urgently needs to be filled with research, data, and listening to lived experience. This needs to be agile - there is no time to waste - because people like me, and like many of you here today, we live our lives in this knowledge gap, in a vacuum of care and understanding. In suffering.


The huge problems we face and the progress we need to make aren’t going to be resolved overnight, so what can we do in the meantime? The least we can do is treat people with unreserved, persistent compassion. Rather than being divided between “us” and “them”, we are all in this painful situation together - clinicians included - and shared suffering is the very definition of compassion.


But sometimes I am left thinking, where is the recognition of this shared struggle, and where is the compassion? We often say eating disorders are so complex, but is it really that complex to understand how, in the face of uncertainty and suffering that isn’t easily resolved, what we need is persistent, unwavering compassion? This is the absolute minimum we all deserve.


As I come to the end of this speech, I am wondering how to end and I want to leave you feeling inspired and optimistic. But a lot of what I have said this might sound angry, sorrowful, or negative. I am reassuring myself that all of these feelings are valid, and that we don’t always have to wrap up our experiences in a neat package, or make our stories of illness presentable and acceptable to people who might only want to hear the positive.


We are all here for lots of different reasons - we might be angry, fearful, determined, optimistic, or exhausted. We might be here out of hope, that another way is possible. I don’t share that hope, and I don’t mean this negatively. I don’t hope that another way is possible in eating disorders, I know that another way is possible. I know that we can do better with more knowledge, resources, and compassion. That we can be more ambitious and that all patients can be offered the opportunity of recovery.


We need now to build the structures that mean people don’t have to hope for treatment, they will know that it will be there, for as long as it takes. We need to provide care that people know, with confidence, will help, so is worth engaging with. We need not just to have faith, but to create something we can have faith in.


And as for people who say otherwise, who persist with old ideas and limited and limiting understandings, who put barriers in the way? Well, we won’t let them. We will hold our heads high, and with grace we march on.





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Thank you James for your insightful and honest words and for speaking up for those of us who find it difficult to do so. For anyone who was unable to attend todays March I want to share how incredibly emotional it was listening to everyone’s experiences and a feeling of the shared pain and suffering we have collectively experienced. As I stood there sobbing I felt the support of those around me, I experienced more understanding and compassion today than I have in over ten years of treatment. James you are right we deserve better.

Louise

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Thank you so much. It was a very emotional event, and there was a contradiction between being able to talk about the really difficult and negative experiences too many people have had and it also being at the same time somehow tremendously positive(?) and compassionate. We are so much better than this as a society, and we deserve so, so much better. I could feel the compassion and shared struggle and warmth just holding us all there, and it was so very different from my own experiences of treatment in recent years especially, which has been so devoid of kindness. Sending a huge amount of solidarity, appreciation for your comment, and compassion! James x

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