Hope Virgo, multi award-winning mental health campaigner and expert by experience in eating disorders, is our latest Guest Blogger. Below, she shares her intentions and her ‘hope’ for the #ChangeTheStory campaign, and discusses what she believes need to change in eating disorder treatment.
Hi, my name is Hope Virgo and I am an Author and Mental Health Campaigner. I spend my time running workshops in schools, for organisations, and for hospitals. I also work with the Government on a campaign called #DumpTheScales which is all about tackling issues around access for treatment for eating disorders, funding and education. In my personal time, I am married, expecting my first ever baby which is scary but exciting. I spend my weekends seeing friends, enjoy being outside and one of my favourite things is finding a sunshine spot with a cup of tea and just sitting!
What has your response been like for your Anybody and Everybody campaign?
We launched the Anybody and Everybody Campaign to #ChangeTheStory on 2nd March 2022 and it was brilliant to see so much support coming in. From celebrities such as Sean Fletcher, Jamie Oliver to Simon Thomas as well as campaigners, influencers. The campaign launched in parliament with over 30 MPs joining the launch to show their support and to find out more about what they can do ensure that people affected by eating disorders are getting the right support.
It was brilliant to see so much support and we are excited about the next 12 months where we have some exciting things planned.
16% of the adult population in the UK will have an eating disorder in their lifetime – this statistic is shocking and shows just how many people are affected by eating disorders. Do you notice this impact in the recovery community?
Eating disorders aren’t new illnesses but the research has shown that there has been a huge increase over the last few years. However, I believe that these statistics don’t tell the whole story. The statistics don’t tell the stories of those who are living with an eating disorder every day and unable to access support, those who are maybe functioning at a high level without getting the support they need. Those who are hidden in plain sight. We are also often hearing only certain stories or about certain eating disorders which often adds to the stigma and stereotypes created across society.
Has the conversation of eating disorders improved since Covid and lockdown? If not, how would you suggest we can ‘change the story’ and make eating disorders a topic that is discussed, mindfully (within our social circles and health care professionals)?
When we think of eating disorders we often immediately think of a white teenage emaciated girl and fail to realise that eating disorders are so often hidden in plain sight amongst all ages, genders races, ethnicities, body shapes and weights, sexual orientations and socio-economic statuses. What we do know is that eating disorders are not choices, but serious biologically based mental illnesses from which full recovery is possible, with early detection and intervention with evidence based treatment. I don’t think this stigma has shifted much even with the increase in people struggling and there is a lot as a society that needs to be done to challenge this thinking.
Within social circles, it is important that people feel heard and understood. That we stop judging eating disorders based on what a person looks like and is eating. With the latest calorie legislation passed, it is important that we don’t bring calorie conversation into the mealtimes, that we remain allies to those affected by eating disorders by asking for menus with no calories on and if they can’t provide that asking the person with the eating disorder how we can support them through it. When we are working in health care, we need to be equipping people to deal with the world outside treatment. Recovering into a world which is obsessed with dieting, exercise and shrinking oneself can feel impossible to navigate.
“When we think of eating disorders we often immediately think of a white teenage emaciated girl and fail to realise that eating disorders are so often hidden in plain sight amongst all ages, genders races, ethnicities, body shapes and weights, sexual orientations and socio-economic statuses.”
You know eating disorders do not discriminate. We do too. Why do you think there is still stigma surrounding eating disorders?
Because people don’t understand them. I think part of that is historic but also the fact that in recovery you have to choose to eat each day but yet eating disorders are not a choice. I also think that because of society, we have ended up normalising eating disorder culture across the board which can be dangerous overall not only at fuelling the stigma, but stopping people reaching out for support. There is a lot that needs to be done to challenge the thoughts around eating disorders and it is about the whole of society becoming educated on this. It’s about the media changing the story they tell, not just showing the same sort of pictures and ensuing that when eating disorders are reported on that numbers are avoided.
What are your main aims for your latest campaign?
To change the story around eating disorders in how they are portrayed, reported and understood. And on top of his to help people realise that they can fully recover. Too often in recovery people lose hope, and think things will never change. We want people to know that full recovery whilst might take time to get there is so possible.
The campaign is all about education, empowerment, bringing together the genetics and the environment and to change the story around eating disorders from looks to knowing that full recovery is possible!
We are creating noise around eating disorders helping to change future policy. It will also provide practical tips, advice and guidance for those struggling and their significant others.
What advice would you give to someone contemplating eating disorder recovery?
I totally get how it feels when we are in the depths of the eating disorder, the fear that consumes us and so much of our lives, thinking. Perhaps it is keeping you safe, numbing emotions, distracting you… but whatever it is promising you, it won’t ever deliver on. Recovery is hard, relentless in places it can feel impossible to navigate at times, but it will be so worth it.
I found focusing on all my reasons for wanting to get well helped in those moments when the fear consumed me, as well as finding a way to communicate was essential in feeling heard and understood. I was really scared about recovery and it was certainly a marathon where I learnt so many things about myself, but over time it got easier and along the way I found so many positives!
What improvements do you think society/mental health facilities can make, so access to treatment is inclusive for all?
It is sad that we live in a society where there are so many barriers to treatment from BMI, to gender, to accessibility to cost. I believe we need to completely change up how we treat eating disorders. The current approach is very one-size fits all, without much (if any!) continuity of care when someone is discharged. What we need is proper funding in to services to meet the demand! We need to ensure that everyone can have access to services regardless of BMI, regardless of whether they have money or not and regardless of their postcode. We need to make sure that when someone is weight restored, or has healthier eating habits they are still getting support mentally; that they are being taught how to eat in the community; learning those day to day things, like choosing a meal off a menu, cooking, clothes shopping… all the things that so many will take as something that they ‘just do’, but for some with eating disorders, these may feel harder to navigate.
“… we need to completely change up how we treat eating disorders. The current approach is very one-size fits all, without much (if any!) continuity of care when someone is discharged… We need to ensure that everyone can have access to services regardless of BMI, regardless of whether they have money or not, and regardless of their postcode.”
We also need to be working with individuals much more holistically. I often hear of people being discharged or places not working with individuals unless they want to get well. This is not the right way to go about it. Instead, we need to be working with individuals helping them to change that mind set.