Even in 2020, where the once taboo notion of mental health is openly spoken about, eating disorders are still significantly misunderstood.
Yet one woman is on a mission to help people struggling by shining a light on the mental rather than physical aspect of the illness.
By doing this, Hope Virgo aims to end the belief that eating disorders are solely about weight, which often leads to delay in treatment if people are not deemed ‘thin enough’.
Speaking to Uspire, Hope told us about her #DumpTheScales campaign in which she is looking to revolutionise how efficiently those with eating disorders can seek help.
The mental health crusader said: “Eating disorders are so much more than weight. They are about control, numbing emotions, distraction from everyday life.
“Because they have physical side effects, people forget they are a mental illness. This means people are often left until their weight is really low before they access support.”
While it is reported that 1.6million people in the UK have an eating disorder, statistics are likely to be an underestimate given many people do not report issues or seek treatment.
Opening up about her own experiences, Hope revealed she developed anorexia aged 13, with the eating disorder becoming “like a best friend” that was with her all the time.
Hope explained: “It gave me value that I wasn’t getting from anywhere else. I didn’t realise how dangerous what I was doing was, or that I had anything wrong with me at all.
“Fast-track to 17-years-old, sitting in bed in a mental health hospital: my heart had nearly stopped, my hair was thinning, and I was about to begin the hardest year of my life.
“I had to fight to accept I had anorexia, and then fight to recover. After that year in hospital, I was discharged and knew what I had to do to maintain my recovery.”
Yet unaware of her triggers and how she was using her anorexia as an unhealthy coping mechanism, Hope struggled to manage her recovery and she later relapsed.
Hope continued: “I referred myself to adult services and got an appointment at an eating disorder unit… but then I was told I wasn’t ‘thin enough’ for support.
“I left the appointment not sure what to do. I had wanted someone to take my relapse seriously and give me some help. Yet now I felt like a fake.
“When this happened, I came very close to ending my life as I didn’t see a way out of any of this. Luckily, I had a fantastic support network around me, who knew about the illness.”
It was only when Hope began to share her story, that she realised how frequently what happened to her was happening to others on the NHS.
She discovered that people with eating disorders were being discriminated against and refused treatment based on their BMI [body mass index], contrary to the NICE [National Institute for Health and Care Excellence] guidelines that acknowledges this problem.
It was then that she decided to launch her #DumpTheScales campaign, to make sure that people with eating disorders get the support they need regardless of their weight.
Eating disorders have the highest mortality rate of psychiatric disorders; while 50% of sufferers will recover, 30% will improve and 20% will remain in a chronic condition.
Hope said: “At the moment, people are still being turned away if they are not ‘thin’ enough; not only can this make the eating disorder worse but it is also a complete injustice.
“We wouldn’t turn someone with a broken leg away telling them to come back when it is worse, and we should not be doing this for people with eating disorders.”
The specific NICE guideline for eating disorder diagnosis that Hope is looking to implement across the country is: ‘1.2.8 Do not use single measures such as BMI or duration of illness to determine whether to offer treatment for an eating disorder’.
She added: “We know early diagnosis is a critical element in the success of treatment and by the time ‘obvious’ signs of eating disorders manifest, it is likely that the illness will have become ingrained in the individual, and therefore much more difficult to treat.”
Hope believes that if we tackle this and change healthcare policy and public understanding around eating disorders, the benefits would be huge – notably preventing health decline and death, saving the NHS money, and a higher success rate in recovery.
By focusing on mental health rather than weight, Hope says people can get the right support – via therapy, group work or meal plan support – before their illness get worse.
When asked what Hope might say if someone struggling might be reading this article now, she said her number one pearl of wisdom is to communicate.
She said: “Talk! Make sure you are getting the support you need.
“Just by losing weight, it won’t make you happier. I thought it would for so many years but, in fact, when I was at my lowest weight, I was so unhappy.
“Focus on the memories you can create, the energy you would have it you ate. It is hard work to start accepting yourself, but it is so, so amazing when you get to a place where you can and when you can begin your own recovery.
“Don’t be ashamed of how you feel. Don’t wait until crisis point to speak up.”
Hope fears that lockdown during coronavirus may lead the public to feel more conflicted with their bodies than ever, with people spending time on Zoom looking at their faces and picking themselves apart, though she says the key is to challenge negative thinking.
“For me, I have to stop myself from body checking and making comparisons to others.”
To sign Hope’s petition, click here: #DumpTheScales.
If you would like confidential advice, click here to contact Beat, the UK’s leading charity supporting those with eating disorders.