Hope Virgo, Author and Multi Award Winning Mental Health Campaigner / Public Speaker, kindly took time out of her busy schedule to answer some questions about her experience of eating disorder recovery, her hopes for the future of eating disorder treatment and how she remains hopeful

– What is your relationship with the words recovery and recovered? 

Depends when you ask me! Whilst words like this helped me so much, the lines between both recovery and recovered is not as clear as words make it to be. They merge together so much more than we talk about. They are messy in so many ways. At points in my whole process I have felt anger towards these words for simplifying something that is much more complex than this or that, but they also provide hope that things can change.

For me when I take these words head on, I would say I am in a process of recovery but at what point would I say I am fully recovered? When I never have a bad day or is it more about knowing how to manage myself and what I need? For me, it’s about knowing the bad days won’t knock me back into a spiral of eating disorder thoughts. It’s knowing that my brain won’t be constantly criticising me. There is also for me and I believe for others an element for challenge behaviours, challenging thoughts and for all of us re nourishing our brains so they can rewire and recover. 

– At what stage do you regard yourself on the recovery journey? 

When I reflect back I always would say “my recovery started when I accepted I was unwell and needed support with food and exercise” but I think it’s never as clean cut as that’. The whole journey of recovery for me was so messy in so many ways, it was one step forward, many steps backwards. It was static, a place flooded with so many emotions. A place of anger, sadness. Of grieving my previous life but also anticipation of a future free from the grips of this ghastly illness. So whilst I say it probably started when I accepted I was unwell, I have had relapses along the way where I would still count myself as on a learning process. For me, it’s how we deal with those relapses, those triggers, what helps me stay on the road to recovery in those moments and what can I do to share myself some kindness? 

– I know how much effort recovery takes, and recognise that dealing with change can often lead to anorexic behaviour. I am very conscious that becoming a mother would be a huge change and no doubt, will constantly throw up new challenges. How has this impacted on your recovery?

Pregnancy when you are in recovery from an eating disorder is a minefield. For me the eating disorder had numbed so many emotions, and during this time, the anorexia tried to use this uncertainty to pull me back.

While having kids wasn’t necessarily the entirety of recovery – and certainly nothing I had planned to do so soon – it was something that motivated me to stay well. I needed to be OK with growing a baby inside of me, eating more and navigating pregnancy changes. But whatever you have done to work on yourself, I still it know if anything can set you up for this stage of life. From navigating the foods you can and can’t eat in pregnancy – where you have to check in with yourself that you are avoiding foods for the right reasons – to sitting with emotions that you have previously numbed through eating disorder behaviours.

Then there are the additional risks in pregnancy, with women with anorexia tending to have smaller babies, higher chances of birth complications and slower foetal growth, as well as to the changes to your body, or the tiredness stopping you doing things. Pregnancy can feel isolating and scary. When it doesn’t happen easily, we are left with the feelings that we are failing.  

On top of this, for some reason, pregnancy seems to give people this apparent free reign to comment on your body and your appearance. This is something that I am sure is triggering for so many.

But when you have an eating disorder and your bump is constantly getting commented on, there is once again a heightened fear around what people are really thinking.

In my first pregnancy I had extra support from a dietician, and some support around the eating disorder thoughts, but this time round I didn’t need this extra support (which at points I feel guilty for for saying). It’s been easier this time round mainly because I have a 2.5 year old so I don’t always have a choice about getting on with things, I don’t have as much space to think about what’s happening as I am so focussed on him. 

But there is a fear. A fear of what happens after. What happens when the baby is here? The anxieties, how will the anorexia do its best to seduce me again? And what mechanisms have I got in place to navigate this. This time round I feel much more sure of myself of coping with this all and much more prepared. I have also been able to speak up about what’s important and prioritise my wellbeing. I have been lucky this time round to have a brilliant midwife! But more broadly in this space there is a long way to go to ensure people affected by eating disorders and who are going through pregnancy get the right support! 

– Likewise, I am conscious that the work you do as an international advocate for people with eating distress is extremely demanding and requires you to travel and be flexible. How do you cope? 

Not always well, and I can at times get defensive and feel completely overwhelmed, but I have to remind myself that not everyone will be aware of everything going on for me. Take the last few months, a challenging a pregnancy which I wasn’t going to share online but felt pushed into a corner to do it by some nasty messages from people excusing me of not responding and not caring. I should have held my boundary but i didn’t. But it’s a chance to learn and move forward. 

So in an ideal world for me, it’s about setting boundaries with work and the conversations I have with people. I am not always great at this but am learning each day how to do it better. It’s about realising that after a day of work Joshua and I both need a day of us two. And it’s having people I can share things with it that understand it. I have put a lot of pressure on myself, and am not the best at asking for help or setting boundaries but am getting there and I am sure the more I practice this the easier it will get. 

– What do you do to ensure that you do not slip back into old habits? 

Communicate what my brain is saying and what I need. I have people that I can be accountable to and even when I find them irritating holding me to account around behaviours, I have to remember that the reason I am finding them irritating is probably highlighting something that I need to work on. 

I make this sound so easy though, and I think for so many of us we have to learn to sit with the pain; the heightened emotions trusting that they will pass. 

– What are your hopes for the future of eating disorder treatment?

We recently launched the All Party Parliamentary Group Report on Eating disorders: “The Right to Health: people with eating disorders failed” which highlighted the huge neglect we see within eating disorder services across the country. The lack of evidence based treatment, high rates of stigma, and a lack of hope being held by clinicians. We found out that people with eating disorders are being blamed for not recovering quick enough, and that so often people are being discharged at low BMis. The fact that people with eating disorders are being marked as untreatable in itself is a complete injustice and we must do better. My hope for services that we have a proper investment into services for children and adults to meet the demand, but beyond the investment a proper cultural reform with treatment, with clinicians so that people are no longer being told they won’t recover. 

We need to offer evidence based treatment to everyone and if the treatment isn’t work, we need to be offering them something else instead to help them get well. We know that people with eating disorders can get well no matter how long they have been unwell and how severe their illness is, so why are we giving up on people? 

– When you are having a bad day, how do you remain hopeful?

Some days it’s really hard and I feel completely defeated but life. For me this part has probably got easier since having a child as somedays I have to just get on with things (I said this as someone who can find this extremely hard). For me in recovery from and eating disorder though, I have seen first hard that things can get better and I have experienced so much joy and happiness along the way of my recovery. I have stepped out into a place of fear and uncertainty and it’s worked out okay, more than okay! So I hold on to that. But some days, it is quite literally about getting through that day knowing that at some point things will feel more manageable. 

On these harder days, practically I make time for myself to journal, I have a faith which is a huge part of my own recovery, I make sure I get dressed and leave the house at least for a small bit. And these things help to just keep me going.