Hope Virgo knew something was wrong. She also knew that if she didn’t get help, her condition would worsen. But when she went to the doctor to ask for help, she says she was refused treatment.
“I developed anorexia when I was about 12 years old,” says Virgo. “I really struggled with my emotions and I was sexually abused when I was 12 and I was left with all this guilt and shame around it and didn’t know what to do about it.”
After her heart almost stopped due to malnutrition and low potassium levels, she spent a year in a mental health hospital learning about food, exercise, and how to talk about her emotions. But, when she was 26, Virgo relapsed. “I got all those voices back in my head, the anorexia telling me that I should be exercising all the time,” she says. Virgo went to her doctor to ask for sessions of talking therapy to help get “back on track” with her eating. But, when she talked to her GP and local mental health authority, she was weighed and told that because her body mass index (BMI) wasn’t considered “low enough,” and she was refused all treatment, including therapy. Per the NHS, BMI is “a measure that uses your height and weight to work out if your weight is healthy.” The NHS considers an “ideal BMI” for most adults to be within a range of 18.5 to 24.9.
“The really frustrating thing was that I knew that something was the matter, and I knew there’d be a point that I’d completely lose that control and I’d have to do something to get back on top of it,” she says. “I just didn’t know how I was ever going to get back on track with my eating again.”
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“What followed was this four-week period where I felt like this really fake anorexic person who was not good at having an eating disorder,” says Virgo. “I felt really unhappy all the time, I cried pretty much all the time when I wasn’t at work, and I came very close to ending my life on a number of occasions.” Eventually, Virgo — who’s now 28 — went to her GP and was prescribed antidepressants with the hope that it would stop her suicidal thoughts.
For patients experiencing anorexia, hearing they’re not thin enough can be an additional blow, which can make them feel invalidated, and can lead to further weight loss.
“I felt like this really fake anorexic person who was not good at having an eating disorder.”
Virgo later discovered she was not alone in her experience — many other people with eating disorders had also been denied medical care because their BMI was not low enough. So, she decided to do something about it. Virgo launched the #DumpTheScales campaign in an effort to lobby the government and health authorities to ensure that no one with an eating disorder is refused treatment because of their BMI or weight.
Anorexia nervosa is defined by the NHS as both an “eating disorder and a serious mental health condition”. Physically, the condition can “lead to severe health problems” due to malnutrition, including, in severe cases, an irregular heartbeat, heart failure, kidney problems, fertility issues, and neurological issues including seizures. It is common for recovered anorexia patients to relapse — particularly within the first 18 months after treatment.
The guidelines NHS doctors are encouraged to follow — created by the National Institute for Health and Care Excellence (NICE) — stipulate that “single measures such as BMI” or weight should not be used as for the sole criteria for deciding whether to offer treatment for an eating disorder. Some scientists have criticised BMI as it can be an inaccurate and misleading measurement, which can mistakenly identify athletes and muscular people as overweight.
Credit: hope virgo
But, despite the guidelines in place, a leading eating disorder helpline says it “often” receives calls from people who’ve been refused care because of their weight. “Through our Helpline Beat often speaks to people who were not referred for treatment because were told their weight ‘wasn’t low enough,’ which only deals another blow to their self-esteem and makes the situation worse,” says Rebecca Willgress, head of communications at Beat, a charity supporting people with eating disorders. “You certainly do not have to be underweight to have an eating disorder and just because someone does not fall under a certain BMI measurement does not mean they do not need help,” Willgress adds. “Equally, reaching a particular BMI level is not necessarily evidence of recovery and should not be the only reason for taking patients out of care.”
Mashable spoke to two people with eating disorders who say they were refused various types of treatment because of their BMI. Amy, who prefers to use just her first name, has had an eating disorder since she was about 12 years old. She sought treatment when she was 19 and after several suicide attempts, she was hospitalised and spent nine weeks on a secure mental health ward. Amy was discharged, but one year later she relapsed. Her GP referred her to her local eating disorder service, but during an assessment appointment she was told she wouldn’t be offered outpatient care because her BMI wasn’t low enough. Amy has a sporting background and says she had a higher weight due to muscle, which made her BMI higher — an issue that has been flagged by scientists.
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Amy says she wasn’t seeking hospitalisation, she wanted regular outpatient appointments to get help and advice for her eating and purging “I felt really embarrassed when they refused because it was like my illness wasn’t real and I didn’t deserve help,” says Amy.
“I felt abandoned, like I was failing at anorexia — the one thing I was meant to be good at.”
“I felt abandoned, like I was failing at anorexia — the one thing I was meant to be good at — and like I was just really fat,” adds Amy. “I remember my parents asking me how the appointment went and my reply was that ‘I’m not thin enough yet.'” Later that year, she was re-referred by her GP, but by this point Amy says her weight and symptoms were severe, and she was offered treatment at a residential eating disorder clinic, where she spent 15 months.
Amy says her weight continued to drop thereafter until the point where she was at risk of heart failure. “I was told by the outpatient team that, despite my BMI being about 13.8, my weight would still not normally be low enough yet for them to push for inpatient treatment.” She’s now at home, receiving private therapy and being monitored by her GP.
Adam Fare was 12 when he developed an eating disorder and sought help when he was 17 years old. He says he was refused hospitalisation, therapy, and nutritional guidance. He was, however, offered cognitive behavioural therapy (CBT) by the NHS — but he says he didn’t find this therapy helpful. “I was refused treatment because my BMI was not low enough, because my bloods did not show anything serious,” says Fare.
“I feel I was never trusted until I had to make myself ‘unwell’ enough for treatment.”
Fare says he became very physically unwell and experienced complications like a low heart rate, and kidney and heart failure. “When I turned up to A&E with a BMI of 14.5, and my parents and me begging them [doctors] to admit me, they were going to give me an ‘urgent’ appointment until they realised my heart and kidneys were failing.”
Fare says his experience has made him feel “lost” and he no longer trusts doctors or mental health professionals. “It has severely impacted my life and I feel I was never trusted until I had to make myself ‘unwell’ enough for treatment,” says Fare. “It angers me that it takes something this severe to get help for what is a mental health illness, it should not have to become a critical physical health illness before treatment is offered.”
A Department of Health and Social Care spokesperson said in a statement that decisions about treatment should be “based on best evidence and national guidance” and that they want “mental illness to be treated the same as physical illness”. The Department also acknowledged they’re aware of the issue of weight being used as a criterion for deciding treatment. In 2017, NHS England’s Children and Young People Community Eating Disorders Programme administered training to all teams emphasising the importance of not using BMI or weight as the sole deciding factor for treatment. Professor Gillian Leng, deputy chief executive at NICE, told Mashable clinical guidelines do “not advocate the use of single measures” like BMI or duration of illness.
Through the #DumpTheScales campaign, Virgo wants to get across the message that “you don’t have to be stick-thin to have an eating disorder.” “You can be any size, any shape, and still mentally not be in a good place,” says Virgo. She is calling on the government to review the eating disorder guidance given to doctors and medical professionals. She now has cross-party support and has been working with MPs in parliament, including Wera Hobhouse MP, to work on drafting a piece of legislation.
Virgo also wants better training for junior doctors. “I do a huge amount of work with junior doctors at the moment running workshops for them, all of them are so keen to know what they can do to prevent people with eating disorders ending up in hospital.”
When she first launched her Change.org petition, Virgo didn’t expect it to pick up much steam. “If I’m honest, I didn’t think it would do as well. I thought it would get 100 signatures, and just fizzle into nothing,” says Virgo. But within a few weeks of launching, it had gained 30K signatures and it’s now on 68K.
“At the moment, there’s this whole misunderstanding across the whole of society that to have an eating disorder, you have to be really skinny,” say Virgo. “The way it’s currently being run through services, it’s just fuelling that whole misunderstanding about it.”
If you’re living with an eating disorder and want to speak to someone, call the Beat Adult Helpline (UK) on 0808 801 0677. If you’re under 18, call Beat’s Youthline on 0808 801 0711.
If you want to talk to someone or are experiencing suicidal thoughts, call Samaritans (UK and ROI) on 116 123. If you’re based in the U.S., text the Crisis Text Line at 741-741 or call the National Suicide Prevention Lifeline at 1-800-273-8255. For international resources, this list is a good place to start.
If you have experienced sexual abuse, call Rape Crisis (UK) 0808 802 9999 (12-2:30 and 7-9:30). If you’re in the U.S., call the free, confidential National Sexual Assault hotline at 1-800-656-HOPE (4673), or access the 24-7 help online by visiting online.rainn.org.
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