Do you really believe in full recovery from an eating disorder?

Thinking back to 2007 when I was first diagnosed with an eating disorder, I was so trapped. So stuck, living with little energy, letting food rules dictate my life and whilst I thought the eating disorder was maybe making me happy in places, it was also massively limiting my life… and that is probably a huge understatement. I remember those evenings when I would get into bed seeking comfort from it, entering in to this battling dialogue in my head where I would tell myself that tomorrow I would be okay. Each day was the same. But the next morning I would back on what felt like this conveyor belt with a brain that had no idea how to eat, and a brain which would constantly tell me to do what the anorexia was telling me to do and all would be okay.

But the thing about my recovery journey was even after a year of treatment (and I hasten to add here that you do not need an inpatient admission or in fact any sort of admission to start recovery) there was still a huge amount of work to be done, and also in some cases daily decisions to keep pushing forward.

We live in a world where we normalise eating disorder culture, where we sit down for a coffee catch up with a friend and 90% of the time someone in the group will say something along the lines of “I probably shouldn’t have that cake, but maybe I will be a bit naughty today” or where we have judged someone’s experience of the pandemic based on what they look like now.

Whilst we cannot blame these little comments which for so many seem like harmless judgement, we must not lose sight that recovering in to this sort of world throws up so many other feelings and fears. I know there have been moments when I have had to stop myself going down that route of judgement, or checking in with myself to really work out if I have allowed a fear of certain body sizes to stop my recovering…

So in a world where there is this bizarre fascination on bodies, on food, and where people base so much of their self-worth on what they look like, I want to ask you, do you really believe in recovery?

This question is something that I thought about a lot when I started my road to recovery – often wondering whether total recovery would ever be possible. It was a combination of this, the huge amounts of stigma around eating disorders, and the lack of understanding that eating disorders can present in any shape or size, that led me to decide in 2016 to take the plunge and quit my 9 – 5 job working for a charity, and to instead campaign full time on eating disorders. I decided that I needed to stop getting fixated on the fact that people weren’t able to get treatment or recover, and to work to transform the face of eating disorder treatment, support and care instead.

Eating disorders worldwide

When we think of eating disorders we all have those images in our heads right? And probably for a lot of people they think of the emaciated white teenage girl. Would it surprise you to hear though that only 6% of people with an eating disorder are underweight, and only 8% account for anorexia? The majority of people affected (47%) fall into other specified feeding or eating disorder (OSFED) (Hay et al 2017 study).

Global statistics show that 31-44% of people with bulimia will relapse in the first two years, that 21% of people with anorexia make a full recovery, and 3 out of 4 people with anorexia will spend the rest of their lives with the illness making a partial recovery … I could go on…

What is clear from these stats is something is seriously wrong with the way we are treating eating disorders and this in itself is not right.

It all began in the UK with the #DumpTheScales campaign which started out to ensure that there is an end to the post code lottery around eating disorder diagnosis and access to treatment and support. We know globally that people are not accessing the right support in a timely and effective way. Early diagnosis is a critical element in the success of treatment for eating disorders.

By the time ‘obvious’ signs of Eating Disorders have manifested, it is likely that the illness will have become ingrained in the individual, and therefore much more difficult to treat. Added to this, not everyone gets the “obvious signs”. If we want to prevent people getting more unwell, prevent hospital admission and save lives, we need to make sure that timely access can happen for people of all different shapes and sizes.

As the #DumpTheScales campaign progressed, I began to hear more and more stories on a weekly basis, thousands unable to access treatment all over the world. There are systemic issues behind the deaths of those with eating disorders that need to be addressed. COVID has added to the pressures substantially and we have seen an increase in the number of people struggling with eating disorders.

Eating disorders are preventable and with early intervention, the right treatment, funding, pathways, education and support for the whole family, they can and will be prevented.

Eating disorders are treatable and full recovery is possible at any age and any stage of these illnesses.  Increased research investment alongside educational campaigns will change the conversation around what an eating disorder is/isn’t. This will help to remove the stigma, which will assist in making eating disorders preventable.  Nobody should be dying of an eating disorder; neither should anybody have to tolerate living with an eating disorder.

With all this in mind, I formed the Hearts, Minds and Genes Coalition for eating disorders, bringing together experts, bridging the gap between the physical and the mental.

As a group we are working to transform the face of eating disorders, make sure research is invested in, and ensuring that people get their voices heard.

What can you do to help?

1. Shout about all this – the only way that we are going to make global change is to shout about it all with stories, direct approaches to decision makers…
2. Remember that not all eating disorders are visible – it is so important that we move away from the stereotype that eating disorders have a look. Check yourself with those thoughts, but also if you hear others saying things about it, then call them out
3. Call out eating disorder and diet culture!

 

Hope Virgo is an Author, Mental Health Campaigner, and Founder of #DumpTheScales and The Hearts Minds and Genes Coalition for Eating Disorders. 

Her campaign #DumpTheScales urges health ministers in the UK to take action to prevent high eating disorder levels for the next generation, and increase access to services and treatment. The campaign currently has 116,000+ signatures, you can sign and learn more here. Global advocacy has never been more important and we look forward to similar considerations that are currently underway in Australia.