It’s time to be visible, be loud, be a nuisance about eating disorders

To mark the fourth annual World Eating Disorders Action Dayon June 2, this story is the first in a series on the 2019 theme, “Eating Disorders: We Can’t Afford to Wait”. 

It’s time to be visible, be loud, be a nuisance about eating disorders

By Susan Ringwood

We’ve been waiting for a long time.

Anorexia Nervosa was first formally described by Sir William Gull, physician to Queen Victoria in 1873.

Bulimia Nervosa took another hundred years to be acknowledged by Professor Gerald Russell in 1979.

Binge Eating Disorder had to wait even longer to make the list and it was 2013 before it was added to the official diagnostic manuals.

So, even at the most conservative of views, it has been 146 years since the medical profession has known about eating disorders. Do we really think it is acceptable to still be waiting patiently — to be understood, accepted and given effective interventions for these treatable conditions?

“Awareness” is good but not enough
Are we too polite, too compliant and too rule-abiding for our own good? Do we need to start making more of a nuisance of ourselves?

We’ve been “raising awareness” for decades, but this has done little to seep into society as a whole. I’ve been raising awareness for almost 20 years — is it time to change tack? 

I was travelling home on the train from attending the recent international conference on Eating Disorders held in London. Hundreds of clinicians and researchers from around the world had gathered to learn, share, inspire and challenge each other.  The conference theme was “Putting patient and carerperspectives at the heart of everything we do.” The themewas an inspiration in itself for someone like me who has spent years pushing for that very agenda to be addressed.

I had been giving a workshop with fellow activist and FEAST Board member Erica Husain on ways to equip families with the Incredibles movie-inspired skills they needed to pitch into the eating disorder world. “Suit up, this could get weird” was our theme. 

Derailed on train of misconception

On my late evening train home, I sat opposite a mature couple– my age — early 60s. We made a light hearted comment about the benefits of our Seniors Rail Passes. The man asked what I had been doing in the city. I said: “I’ve been speaking at a mental health conference.” 

I learnt early on in my advocacy work to start my conversations in this way by saying “mental health” and giving the people to chance to get the context first before mentioning eating disorders — to maybe orientate them a little if they didn’t already know. 

“It was about eating disorders,” I added when his initial nod made me judge he did want to hear more. Then he did what people have regularly done in front of me for the past 17+ years. 

He patted his belly, laughed and said: “I could do with some of that.”

Still. Happening. Now. WHY? 

It’s not his fault. I didn’t berate him. I didn’t say: “Have you considered cancer, because that could get the weight off you too….” Why would that have been more shocking? Why would that have been unfair to him? 

But I did ask myself why we are still waiting to get through to people, and can we really carry on waiting?

What are we waiting for?

Waiting for understanding

— so that my random stranger on a train no longer innocently causes such offence. 

Waiting for prompt diagnosis

— the UK eating disorder charity BEAT did a survey of how long people waited before telling anyone else about their own worries that they could have an eating disorder. 

For young people under 16, the average delay in talking to anyone was six months. That was six months after they had an inkling themselves. One young girl said: “I didn’t know I had an eating disorder, I just thought I was a bad person.” 

On average another six months would pass before anyone saw a clinician — usually a GP, which is where the ‘real’ waiting begins. All the while, the eating disorder was getting its hold. Eating disorders don’t wait. But we do know that the sooner someone gets the support and access to treatment they need, the more likely they are to make a full recovery and avoid the long-term consequences to their health and wellbeing that an enduring eating disorder can bring. 

Waiting for treatment

— in the UK much important work has been done to improve access to treatment and speed up waiting times for young people with eating disorders. Auditable standards have been set, and there has been investment in evidence-based services. It’s a start.

While its far from universally excellent, the treatment available for young people today is more effective, more widely and more speedily available than ever before. But we can’t be complacent. Gaps and unacceptable variations remain, with some clinicians working outside the evidence base.

Action is what we need. Now.
So, I’ve more questions than answers.

I believe we need to be more visible, louder and a lot more of a nuisance. Awareness – yes OK, but more than this let’s act. NOW.

About Susan

Susan Ringwood is a Board member of F.E.A.S.T., the global parent support network, and was Chief Executive of the UK charity Beat for 13 years until 2015. Susan was a member of the National Institute of Health and Clinical Excellence guideline development groups for the treatment of Eating Disorders which set standards for evidence-based treatment, for example the Children and Young People’s Eating Disorder Access and Waiting Time Commissioning Guide, and has served on UK government committees and task forces related to eating disorders and mental health treatment.  

Susan is a fellow of the Academy of Eating Disorders, she was a founder member of the AED’s Advisory Board, is a former Chair of the Academy’s Patient and Carers’ Committee and was the 2008 recipient of the AED Meehan/Hartley award of Leadership in Advocacy and Public Service. When she joined Beat in 2001 Susan knew absolutely nothing about the condition. What she learnt, very quickly, and mostly from those parents she met, was that this was a confounding, challenging and downright scary place to be. Fast forward 18 years, and she is serving on the F.E.A.S.T. board to do what she can to bring evidence-based treatment to all — in a way that involves, includes and respects families.

About World Eating Disorders Action Day 2019

This year grassroots activists, volunteers, and over 250 organizations in 40+ countries are calling for caregivers to receive support, health care workers to be properly trained, and access to immediate, evidence-based treatment. 

Why We Can’t Afford to Wait 

• Worldwide over 70 million people are estimated to be affected by an eating disorder, 
• Eating disorders have the HIGHEST MORTALITY RATE of any psychiatric illness  
• Eating disorders affect people of all genders, sexual orientations, ages, socioeconomic class, abilities, races, and ethnic backgrounds. It is time to take action. 
• Good news! When treated EARLY and correctly, eating disorders have the highest and fastest recovery rate!