Hope Virgo has been on a long journey, and the journey isn’t over yet. It began early in her teenage years when she suffered deep trauma and developed a debilitating eating disorder; it finds her now, still moving along the road of recovery, determined to make changes to systems and attitudes on a national scale.
Hope graduated from the University of Birmingham in 2011 with a BA (Hons) in Sociology, and recently returned to campus as Alumni of the Year 2022. She is the author of three books on eating disorders and mental health: the latest, YOU ARE FREE, publishes in May. She is a fierce campaigner and communicator who lists charity ambassador and government advisor among her many achievements. Fresh from briefing the Department of Health and Social Care about the pandemic’s impact on eating disorder patients, Hope has launched the #DumpTheScales campaign, calling for equal and adequate treatment for eating disorder patients of all weights, shapes and sizes. She joins Social Policy Matters to talk about the current state of eating disorder treatment in the UK, balancing her activism with recovery, and how to cope with eating in public after lockdown.
In 2022, people are dying of a treatable illness and this is not okay.
In my recent book, Hope Through Recovery, I detail my struggle through eating disorder treatment and offer constructive advice on what to do when you can’t access help. Eating disorder treatment has been massively underfunded for decades.
Access to services at the moment is disgraceful, and when we look specifically at eating disorders, we know that this is a wider systemic issue. On top of underfunding, these illnesses are still massively stigmatised. I believe we need a complete reformation around services. We need education for all front line staff; we need to make working in eating disorders more attractive so that the workforce doesn’t have as many vacancies. And we need to make sure there is adequate funding to meet the demand for both children and adult services, as adults are often forgotten in these conversations.
Eating disorders are so misunderstood.
Eating disorders are sometimes seen as a phase, a lifestyle choice, something you can grow out of, something that only effects white emaciated teenage girls. Just because someone looks okay, it doesn’t mean that they are; we know that just 6% of people with an eating disorder are actually underweight, but only patients with extremely low or high weights tend to be prioritised for treatment. Some people assume that eating disorders are a choice, and that sufferers are choosing to be difficult about what they eat, and where.
We know that just 6% of people with an eating disorder are underweight, but only patients with extremely low or high weights tend to be prioritised for treatment.
We live in a society where we have normalised eating disorder culture, normalised calorie counting, normalised shrinking ourselves.
So many people don't know what to eat or how much exercise to do, or even how to listen to their bodies or hunger cues. In the UK, we’ve got this all very wrong, and much of the messaging we’ve seen through the COVID-19 pandemic has been extremely detrimental. Instead of focusing on calorie counting—which is unhelpful, inaccurate and can be very dangerous—we need to look more at the emotional connections around meal times and food, encouraging homecooked food and focusing on the memories that we can make. I think we also need to ask people, what does healthy really mean? The narrative around ‘health’ is based on unrealistic ideals. We need to go back to the basics with healthy and ask ourselves what is this to us; physically, mentally and emotionally. Health is not defined by appearance.
My #DumpTheScales campaign reinforces the idea that weight is not a reason to refuse someone eating disorder treatment. There have been moments at my most healthy weight where I was struggling with my eating disorder at its worst.
Balancing activism with my own healing hasn’t been easy. I haven't always got this right. Over the past few years, I’ve realised that I still need time for my own recovery—that doesn’t go away. There have been moments when I have put the needs of the campaign ahead of my own, and instead of working on myself, I have fixated on helping others. I now have to be mindful of my own boundaries. I also have to ensure that I have processing space and time to offload if things come up.
As part of my activism, I work as an ‘expert by experience’ with professionals working in medicine, policy, charities, and religious organisations.
As experts by experience, we bring first-hand knowledge and practical insight on living with an eating disorder and going through treatment. Often, people with lived experience are undervalued, but there is so much they can bring to this space. We need to encourage people to speak up and share.
As we emerge from the pandemic, if you’re struggling to re-engage with food in public, try not to worry: there is a way forward.
Start by socialising with people that you trust, perhaps going to those restaurants you know. When you do go out, have distractions in place around the meal times; allow people to pull you into conversation when you feel yourself withdraw at the meal time. Setting boundaries is also key! Make sure that you are going for food with people who respect that you probably won't want to talk about dieting, calories or weight!
Set yourself some challenges around restaurants and food. Remind yourself why you are working towards eating in these places. Challenge those belief systems that you might have created and start to work your way through them.
Remember that all these changes will feel hard, uncertain and uncomfortable in so many ways, but sitting with that uncertainty and pushing through it will be worth it.
I’m launching the next phase of my #DumpTheScales campaign in line with a coalition of experts…
…Calling on the government for a reformation of services, adequate funding to meet the demand, and training for all frontline staff. Alongside this, I will continue to spend my time in schools speaking to students, carers and staff about eating disorders. Recovery from an eating disorder is possible, and it is worth pushing for!