Installment two of P.O.H.’s new ‘in conversation with’ series (previous guest: Clementine Morrigan on social justice), and I’m joined by the amazing Hope Virgo, her name ‘Hope’ perfectly encompassing everything she stands for:
hope for the future,
hope for a society in which we are both more educated in and more compassionate towards the complexity of eating disorders.
Hope is an author and multi-award-winning mental health campaigner / public speaker advocating for people with eating disorders.
Virgo’s work first rose to prominence in 2018 when she started an eating disorders campaign called ‘Dump the Scales‘, calling on the government to review the eating disorder guidance being delivered by clinicians. The campaign’s goal was to ensure that everyone who needed treatment for eating disorders (/needs because, unfortunately, it is still a problem, which is why Hope continues to campaign today) could (/can) access treatment, no matter what the number on the scale reads.
‘It is time we stopped waiting for people to hit crisis point before offering them support.’
Believing that full recovery from an eating disorder is possible but that the current system isn’t set up to help people get to that point, Hope emphasises the importance of early intervention.
Hope, now 33 and an ‘expert by experience’, (Hope talks, writes, and campaigns about eating disorders from a place of personal struggle- the quote ‘what doesn’t kill you makes you stronger’ personified!) says her descent into anorexia began when she was just 13 years old.
After several years of hiding the extent of her illness, at the age of 16, Hope was diagnosed with anorexia nervosa, and a year later, aged 17, she was admitted to Riverside Adolescent Unit, a mental health inpatient hospital in her hometown of Bristol.
Here is our conversation. ❤️
When you were first admitted to hospital at the age of 17, what was going through your mind? Did you want to recover?
I didn’t think there was anything wrong with me. I was convinced that people in the hospital were trying to take away this one thing I had that I thought made me feel okay. I was so angry at everyone around me and didn’t want to be there.
This is very similar to my experience. It wasn’t until I was 3 months into my admission that I finally came to realise that I had an illness and that I did need to recover. Prior to that, I had so much shame surrounding my diagnosis, so much so that I couldn’t even bring myself to say the word ‘Anorexia.’ When I reflect back and ask myself why I was adamant for so long that I didn’t have an eating disorder, I realise that it’s all rooted in the stereotypes that I was seeing at the time, and that I’d grown up seeing in the media- that of a middle-class, teenage white girl, with all her ‘issues’ rooted in vanity. Obviously, I now realise that this is completely inaccurate and incredibly harmful. Eating disorders are not about vanity. They are about clinging on to a sense of control in a world that otherwise feels very much out of control. But I felt shame at the thought of being associated with that incredibly narrow-minded stereotype.
The assumption that everyone with an eating disorder is visibly emaciated is a very harmful one and one that is, unfortunately, still upheld by lots of people, perhaps most scarily, by medical professionals. I personally know of people who have been turned away from treatment for not meeting the criteria needed to access treatment, i.e., for not being ‘thin enough.’ In basing eligibility for treatment on one’s weight, though, we overlook a key point- the whole point- that eating disorders are mental illnesses. The physical emaciation we see in some cases (but not all) is merely a symptom of an eating disorder; it is not the illness itself.
What stereotypes surrounding anorexia had an impact on your recovery journey?
I still believe that eating disorders are one of the most stigmatised illnesses, and very few people have a good understanding of them. There are still so many stigmas, one of which is that a person ‘grows out of it.’ Because of this, adults have even fewer treatment options.
For me, though, I think the two stereotypes that I have struggled with the most are:
1) That I don’t always ‘look’ like I have an eating disorder. When I relapsed, I wasn’t underweight, and so I was denied treatment because I ‘wasn’t thin enough.’
I remember when I would go into schools to speak, people would look me up and down, debating if I looked like I had anorexia. And to be honest, I think at times other campaigners are just as judgmental. But eating disorders don’t have a look, and it is that mantra I had to keep reminding myself of. That, and remembering that we never know what’s going on for someone
&
2) That we are ‘choosing’ to be like this: For me, this is one of the hardest things to get people to understand. No one chooses to have an eating disorder, but yet we have to choose to eat each day in recovery, so often people think that if we have a hard day, then we are just being ‘difficult.’ I often think that society really fuels these stigmas with the lack of education out there surrounding eating disorders.
I have to say that I see a lot of parallels between your story and mine. I read in this Telegraph article that you did your A-levels in hospital and were discharged just in time to go to university. I was in the exact same position, doing my A-levels in the ‘school room’ in hospital, applying for university, and going to university the same year I was discharged from hospital. And so, having struggled for much of my adolescence, now, as a 22-year-old, in many ways I feel ‘behind’/I feel very disconnected and ‘other’ from people my own age. Is this something that you experienced? Did it impact your education, for example? Your ability to make friends?
Looking back, anorexia massively impacted my growing up, but at the time, I didn’t think it did as I was still going out and still going to school. I rebelled a lot during my teens, but even in those moments, I was not able to be 100% present with my friends and family. I think when you are in the grips of an eating disorder, you don’t realise the impact that it is actually having. It becomes second nature to just think about food all the time or to not have much energy. We don’t know any different until we start to see the positives of starting our recovery journeys. I think for me, I realised that I was missing out on more when I was stuck at a midpoint in my recovery. That was when I would get frustated at myself and the situation, longing to be like others and just be fine eating and drinking. It was in those moments that I had to really start to challenge myself and use these frustrations as motivators to get well.
When I came out of hospital, I felt like my whole identity had been stripped away. My whole life was focused on ‘healthy’ eating and running for what felt like forever so to come out and not be doing that anymore was a massive change. It took a long time for me to ‘find myself’ again, and I’d say it’s only been in the past year that I’ve felt like I finally have some grasp on who I am.
Did you experience something similar in terms of needing to rediscover who you were outside of anorexia? How did you come to ‘find yourself’ again during this process?
I lost myself to anorexia, but I do think that we go through a lot in life where we lose ourselves – for me, becoming a mother, I also have had to go through the process. One way I managed to do this was by focusing on all the things that brought me joy in life. The things that made me happy and the things that kept me going each day. I had mantras reminding myself that no one looked at my body, mantras to remind myself that I was enough, and mantras to keep me motivated.
What prompted you to leave your day job to become a full-time campaigner?
How do you keep yourself mentally well in a job that, I presume, can be, at times, quite draining?
I used to work at the Alzheimer’s Society, but I lost my passion for it. I didn’t really enjoy the work environment there, and while I met some lovely people, it just wasn’t for me. And I realised that if I did not quit now to campaign, when would I? So back in December 2016, I handed my notice in, and yes, it’s been hard; yes, mentally, it can be tricky, but I love what I do, and this is my passion. I have experienced the barriers to treatment firsthand; I have experienced anorexia firsthand; and I don’t want anyone to go through what I did.
I still struggle to look after myself completely, but having a baby has made this even more important!
Having had your first child fairly recently, how did you find the process of seeing your body change in pregnancy?
One of the driving factors that kept me going throughout my recovery was focusing on my motivations, telling myself that, on the other side of fear, there was this wonderful opportunity laying ahead of me to really live life.
While having kids wasn’t necessarily the pinnacle of all of these factors – and certainly nothing I planned to do 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.
So on that Wednesday morning in November, as I was staring at the pregnancy test, I was excited but afraid. While pregnancy is a challenging time for many, when you throw an eating disorder into the mix, it adds a whole other complicated layer.
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, it’s hard.
Seeing your body change is hard.
Tiredness stopping you from doing things is hard.
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.
I would be lying if I told you that it had been plain sailing. There were moments when I wasn’t sure I could keep going and moments when things felt innately tough.
For me, my pregnancy began to feel like a juggling act of managing my own recovery and trying to give my baby the best start in life- this huge pressure. As my pregnancy progressed and I got more tired, I was unable to move as much, I had to eat more, and I had to battle harder to listen to my body.
I have been very lucky to be under a consultant the whole time, have received additional support from a dietician, and was on a pathway where I had access to extra scans because of the added risks anorexia posed. With this support, I knew what I had to do to stay well. I knew the importance of communication and focusing on the baby and its health.
I find the concept of believing in something bigger than oneself, particularly in the context of recovery from mental illness, extremely interesting. For me, I had no faith prior to my recovery. In a way, anorexia was my belief system. Instead of submitting to a god or a spirit as a higher power, I submitted to the rules anorexia imposed on me. Calories, step counts, and macros became my higher-power.
But now, spirituality- my belief that our bodies are just a vessel for our soul- is, I’d have to say, probably the biggest protective factor in my staying well. While I still have lots of hang-ups around body image, I still feel uncomfortable with the way my body looks and feels- my belief that we are so much more than our earthly bodies is massively cathartic, and it helps me to rationalise what can only be described as wholly irrational, ego-driven thoughts. It helps me to recognise that our bodies are the least interesting thing about us. What really matters is who we are- what we believe in, our ethics and values, the people we love- and the ways we contribute to a better world, none of which have anything to do with our appearance.
Having followed you for a while, I understand that you have quite a strong faith in Christianity.
When you were in the depths of anorexia, was your faith in a ‘higher power’ still strong, or did you feel that it wavered at all?
I have actually only been a ‘proper Christian since 2019. When I was a child, I went to church because we “had to,” but I never really enjoyed it and went for the social setting. I was sexually abused in the church when I was 13 years old, which was a huge contributing factor to developing anorexia. I walked away from church when I was about 17 years old. I had been angry at God for so long. In 2019, I took the alpha course at hTb, and that’s when I made the proper commitment to be a Christian. I had my questions answered and began to trust God more. I definitely have moments when I get angry at God, but I don’t think that’s a bad thing necessarily, as he can be alongside me in my anger and frustrations. Having faith helps me so much. It gives me strength and also enables me to put one foot forward on really rough days.
For me, alongside my belief in the existence of a higher power, the biggest factor that keeps me well is having a sense of purpose. When I feel like my life is at a crossroads or that I’m unsure of my purpose, I notice that my mental health very quickly goes into decline, and I very quickly find myself feeling more insecure about my body image.
Do you think that finding a sense of purpose in advocating for a greater understanding of eating disorders has helped you to stay well? How did you find that purpose, and do you have any recommendations for people who might be struggling with their own, maybe feeling like they don’t have a purpose?
Advocating for eating disorders certainly has helped me to stay well, but I do also have to manage my wellbeing even more now. Anorexia is an extremely competitive illness, and I have certainly felt this to be the case. Have I been sick enough to share my story? Have I been through what others have to the same extent to give me the authority to share?
I think for me, I campaigned too soon, and maybe I should have been in a better mental space before I did, known how to set boundaries more, etc. So my advice to others is to have those ways to set boundaries and to make sure that if you do work in this space, it doesn’t become your whole identity.
Looking ahead, what can we expect to see from you? More advocating? More books?
I am planning for the next general election at the moment, so more campaigning and hopefully some proper concrete change from the government!
A final question: If you could go back and say one thing to your younger self, aged 12, just before she was diagnosed with anorexia, what would it be?
Don’t lose hope.
Things can change.
Keep going and trust that, on the other side of fear, things can be really good.
Thank you, Hope!
🖤
To keep up to date with Hope’s work, you can follow her on social media.
Instagram: https://www.instagram.com/hopevirgo_/
Twitter: https://twitter.com/HopeVirgo?ref_src=twsrc%5Egoogle%7Ctwcamp%5Eserp%7Ctwgr%5Eauthor
Facebook: https://www.facebook.com/Hopevirgoauthor/?locale=en_GB
To show your support for Hope’s mission and for people living with eating disorders, sign the #dumpthescales petition here: https://www.change.org/p/eating-disorders-are-not-just-about-weight-dumpthescales.
Check out her books! https://www.amazon.co.uk/Hope-Virgo/e/B01NBIRW4V%3Fref=dbs_a_mng_rwt_scns_share
(Her latest book is available for preorder now: https://spckpublishing.co.uk/is-real-freedom-possible)!
For further information or support about eating disorders, I’d encourage you to check out BEAT https://www.beateatingdisorders.org.uk/ or NEDA https://www.nationaleatingdisorders.org/ for advice.
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