We live in a society where low weight is accepted, not talked about, not treated. As I know well from personal experience, people only get treatment for eating disorders when they are nearly dead.
Recent statistics have revealed a steep increase in the number of people with eating disorders admitted to hospital. I am an expert in eating disorders, having spent 20 years as a revolving door patient, locked away in a number of different psychiatric wards. In one single eating disorder unit I saw fellow patients die during or following treatment.
The severe risk of dying from an eating disorder has almost become normal. Yet shockingly, most of these deaths are avoidable.
The idea that people have to be a low enough weight to be treated in a specialist ward is extremely problematic. Most of my eating disorder admissions came after I’d spent time in an acute general psychiatric ward. I was there because I was in an extremely unsafe state, at risk of suicide, but my BMI wasn’t low enough to warrant admission to an eating disorder unit.
I remember being forced to stay in bed for weeks, with a nurse watching me with beady eyes (while reading the Argos catalogue). I remember the pain, the humiliation, the perils of being tube-fed.
I remember arguing with the doctors – everyone – about that elusive abomination, “target weight”. Weight gain was the sole focus on most wards. While physical restoration is crucial, this focus fed my pathological obsession with the numbers on the scales while other key issues were overlooked. I would then be discharged, paradoxically still underweight, and conditioned to relapse.
But recovery is possible. Eventually I was admitted to the specialist Cotswold House ward at the Warneford hospital in Oxford, which was radically different to anywhere else I had ever been. During the five months I spent there in 2017, I found a holistic approach using enhanced cognitive behaviour therapy. Every aspect of my being was cared for – physical, mental and spiritual. I thrived, and learned to accept my bodily and mental growth as never before.
Staff on the ward encouraged me to become an expert on my illness, to interrogate its complex history, and to invent new ways of becoming and being truly well. I was able to guide and inform my own recovery.
My psychologist moulded and nuanced the programme around my individual needs, strengths and weakness. Similarly, interactions with members of the multidisciplinary team and attending groups enabled me to use my art and poetry to express my most difficult issues about trauma, abuse, dissociation and amnesia. The care I received as an inpatient and in the community was enough to help me shift 20 years of disorder and detainment, and create a new, vibrant life.
I was discharged, supported, and never looked back.
Others are not so lucky. Insufficient investment in treating eating disorders means a shortage of inpatient beds. Only the most severely ill patients are referred, so treatment centres are still full of people about to die from malnutrition, while under-resourced community teams are unable to offer the evidence-based treatment that could keep people out of hospital in the first place.
We need to change the culture of thinness, which pervades and poisons our very existence, and allows people to die from an eating disorder. We also need to improve basic medical knowledge, since UK doctors on average get only two hours’ training about eating disorders.
With more people seeking help, more money needs to be invested to meet the increased demand. NHS England has published (pdf) commissioning guidance for adult eating disorder treatment, but there is only one pot of money for all mental health issues, so eating disorder services have to fight for resources . The situation is slightly different in Wales, Scotland and Northern Ireland, where health services are devolved, but services are smaller and still under-resourced, with very few specialist beds – none in Wales.
Meanwhile, stigma tarnishes and prevents all aspects of treatment. This infiltrates medical education, with doctors taught that anorexia nervosa is a lifestyle-related disorder.
Many people, like me, feel too embarrassed to ask for help. But I found my lifeline. I am proof that it is possible to recover from an eating disorder, no matter how long you have been unwell.
Now is the time to persuade the NHS to fund services that can save lives, invest in community teams so patients can get treatment earlier, educate healthcare professionals, and break down stigma.
Most of all we need to connect patient voices and stories of recovery, empowering hope to feed us all.
• Lorna Collins is a peer support worker, artist and writer. She tweets from @sensinglorna
