Eating disorders need to be seen as an emergency, says campaigner Hope Virgo

Mental health campaigner Hope Virgo is calling on the government to take eating disorders more seriously and treat them as the emergency they are.

"We know that eating disorders aren't about food and they're not about body image. They're serious mental health issues," Virgo tells Yahoo Life UK.

Eating disorders – which have the highest mortality rate of any mental health issue – are still not being seen as an emergency, she says. "That's something that needs to be tackled quickly."

This Eating Disorder Awareness Week, the award-winning advocate hopes to improve the way eating disorders are treated.

Virgo, together with The Hearts, Minds and Genes Coalition, has launched the new #ChangeTheStory campaign today in Parliament, with an aim to debunk stigmas, prevent shame and help those affected access treatment.

Watch: Hope Virgo launches new #ChangeTheStory campaign to tackle eating disorders

Some 16% of the population thinks eating disorders are something a person chooses, while 44% think people develop one because they want to look a certain way, according to new research from Ipsos Mori.

"I want to make sure people know that eating disorders can present in all different body sizes, genders, people of all different backgrounds and races," Virgo, 31, says.

The author of Stand Tall Little Girl also said she wants to address the blame on parents.

The Anybody and Everybody campaign to #ChangeTheStory, is a 12-month initiative with a different focus each month. The new project is an extension of Virgo's #DumpTheScales campaign, which she launched just over two years ago.

This set out to scrap BMI when judging whether someone has an eating disorder or not, with Virgo personally being turned away twice – once when she relapsed, and once when pregnant – when seeking help.

"There are still too many people getting turned away from services for not fitting neatly into this box. And it's still an issue that isn't being taken seriously by the government," she says.

"When you turn someone with an eating disorder away for not being thin enough, it just fuels this kind of competitive nature in your brain and makes you feel invalidated.

"It also adds to the shame, guilt and stigma that so many people are facing at the moment around their own eating disorders."

The campaign was included in the women's inequalities health report last summer and put eating disorders on the government's agenda.

Virgo has hosted a number of roundtable events with ministers and MPs, meeting with the Department of Health frequently. "But it still isn't being taken that seriously," she says.

While she explains that people do seem to care, empty promises of funding in years to come is halting any real progression, when change is needed now.

Read more: UK musicians share mental health struggles in NHS video

Virgo developed anorexia when she was 13, which she thinks was triggered by the sexual abuse she suffered not long before. She believes other factors such as genetics and a "dysfunctional" family background played a part.

"For me, the eating disorder was a coping mechanism to life," she says. "It numbed a lot of emotion, it gave me a real purpose, and it acted as a big distraction on a day-to-day basis when I didn't want to feel or think about things."

She lived with the illness for four years before receiving treatment, partly due to a widespread lack of awareness of eating disorders and partly due to her own secrecy.

But eventually, her school got in touch with her mum.

Following a doctor's visit, she was referred to the children's adolescent mental health services (CAHMS) where she spent six months as an outpatient at 16.

Aged 17, she was admitted to inpatient treatment and spent a year in hospital. She describes herself now as being in a state of ongoing recovery.

Read more: Stacey Dooley urges mental health discussion and shares coping strategies

So why does discussion of eating disorders always seem to focus on anorexia?

"I think one of the reasons is that it's still the eating disorder that's put on a bit of a pedestal," she muses. "I think because of the glamorisation around it that we see in films, it means people find it easier to talk about.

"Other eating disorders, I think, carry a lot more shame and more guilt, which then stops people reaching out and sharing their stories.

"If you're not seeing your own eating disorder represented in the media, you're probably not going to start speaking up about things as much," she adds. It's that very issue that her new campaign will try and tackle.

Only 8% of people with an eating disorder diagnosis have anorexia. Other eating disorders include bulimia nervosa, binge eating disorder (BED), other specified feeding and eating disorder (OFSED), emotional overeating, pica, selective eating disorder (SED) and orthorexia nervosa – all of which have varying symptoms.

"The campaign is also trying to address the fact there are a lot of people who are functioning at a high level with an eating disorder," says Virgo.

After her initial recovery, when she relapsed in 2016 she was told she wasn't underweight enough to qualify for treatment. More recently, the mental health perinatal team also weren't able to offer her any concrete treatment because she didn't fit into the BMI bracket.

"It's just ridiculous," she says.

When Virgo was in hospital, one of the aims she focussed on to help her recover was the desire for a family of her own one day. Last August she got married and in November she found out she was pregnant. "It was so unexpected, if I'm honest, we weren't planning on it at that stage," she says.

While this is an extremely exciting time for her, it's also presented new challenges as someone with a history of an eating disorder.

Read more: How to spot anxiety in your child – and how to help them

"My main challenges have been my body changing in a way where you feel completely out of control," she admits. "I'm not able to exercise as much as I used to because I'm a lot more tired now."

She's battling to make sure she doesn't relapse, despite the pressures, such as the unintentional messaging around pregnancy that she feels can be unhelpful for vulnerable women like her.

For example, a few weeks ago, she was told by the midwife team to exercise more to manage anxiety around the baby. "That doesn't really work for someone who's previously had an exercise addiction."

"I know that I can get through the pregnancy, because I'm doing it for a baby," she says. "But I think it's the aftermath where you're at home, probably really tired, and your body won't go back to what it was before.

"That shouldn't matter, but I think that's why I have a lot of fear around it."

Virgo wants to reassure others struggling with eating disorders. "Don't lose hope that you can recover. I think we can get stuck in these situations, but we need to hang on to the fact that we can make a full recovery," she says.

She suggests thinking about what motivations and distractions you have in place, finding a way to communicate your feelings and making a list of all the positives about recovery.

And what advice does she have for those supporting sufferers? "The first thing is to realise you cannot fix that person, at the end of the day it's up to them to do that.

"But it's worth talking to them about what their recovery might look like. My other half often asks me, 'How are you feeling about your recovery this week?' It's those open-ended questions which give you the space to just blurt out anything that might be going on and be really honest."

Read more: Men and depression: How to spot the signs and address it

She also suggests making mealtimes, which can be very tricky for sufferers, about sitting down properly together and having an emotional connection, instead of just eating in front of the TV.

You can get involved in the #ChangeTheStory campaign by holding up a sign with the hashtag and a message about how you are supporting it.

You can sign her campaign #DumpTheScales here.

For support, contact eating disorder charity Beat's helplines, which are open 365 days a year from 9am–midnight during the week, and 4pm–midnight on weekends and bank holidays, or via its one-to-one web chat.