When Jacqui Valdez was 16, she wrote down every calorie she ate. She took 20 laxatives a day and went on frequent fasts, eating only fruit or vegetables for days. Over the course of two years, she lost 82 pounds. These are all clear symptoms of an eating disorder. Despite this, Valdez was never "officially" anorexic. Why? Because Valdez has never been underweight.
According to the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), a person must have a "significantly low body weight" to be diagnosed as having anorexia nervosa. In real terms, this means doctors must weigh patients in order to assess whether they suffer from the condition. A patient only qualifies as underweight_—and therefore anorexic—_if they have a body mass index (BMI) of under 18.5. Access to lifesaving treatment rests on this diagnosis.
"My highest weight was around 190 pounds and my lowest was 108 pounds," says Valdez, who is now 27 and works as an administrative assistant. At 5'3, she needed to be lower than 104 pounds to be considered underweight.
Because Valdez was overweight as a teen, dramatic weight loss did not lead to becoming dramatically underweight. This doesn't mean she didn't suffer. Valdez was no more anorexic at 18, when she weighed 108 pounds, than she was as an 150 pound 16 year old. At both ages, she was suffering from a mental illness that led her to obsessively count calories, restrict her food intake, and hate herself and her body.
"My teeth have rotted, I've lost some 90 pounds back-and-forth, and I have terribly chronic low blood pressure," she says. "No matter how hard I worked, or days I went without eating, or laxatives I took, all of it was for nothing because I never hit my goal weight."
Her goal weight was 104 pounds—the exact number she would need to hit to be considered underweight. Not only does the weight criteria for anorexia reduce a psychological disorder to a physical one, it also acted as thinspiration for Valdez.
Valdez is what the DMS-V would call an "atypical anorexic." Since 2013, a new eating disorder called OSFED (Other Specified Feeding or Eating Disorder) features in the manual. An individual has an OSFED if they do not meet the weight criteria for anorexia or bulimia. One of the five subtypes of OSFED is atypical anorexia, which is where individuals like Valdez—who have disordered eating but don't meet the low weight associated with anorexia—fit in.
Though this new definition is excellent progress, in practical terms it doesn't do much good. There is currently no specialist OSFED treatment centre in the UK, and in order to access National Health Service treatment for anorexia, individuals often need an exceptionally low BMI. A survey of 500 patients by Beat in 2013 discovered that 40 percent had been told their BMI was not low enough to access treatment. In the US, health insurers are allowed torefuse payment for eating disorder treatment based on their own diagnostic criteria.
Being sick enough to be admitted to hospital was one of many goals.
This illogical system means doctors wait for a patient's condition to become severe—even life-threatening—before they offer a cure. Just imagine if the same attitude was taken to physical diseases like cancer, or other psychological disorders such as schizophrenia.
The UK's leading eating disorder charity, Beat, is aware of these issues. "BMI as the sole criterion for determining access into treatment, whether that is for the physical or the psychological aspect of an eating disorder, is horribly flawed," says Lorna Garner, Beat's chief operating officer.
"In the absence of a better measure, BMI is the only tool that GPs have to use in order to determine whether someone is under- or overweight. We would not advocate removing it completely, but would ensure that it is not given too much emphasis... Equally, we would not advocate the arrival at a particular BMI marker as being evidence of recovery."
It's clear that a healthy BMI should never be considered evidence of a healthy mental state in the first place. Laura*, a 29-year-old who works in HR, suffered from anorexia from 2006 to 2013. Though she frequently fasted from 7 AM until 8 PM, meticulously portioned out her food for the week ahead, and exercised for an hour a day, she took great pains to ensure she never became underweight.
"At five foot two, the lowest healthy weight I could have was 101 pounds," she says. "I didn't want to get too thin because I was afraid my doctor would take away my Adderall or lower my dosage."
Laura had originally been prescribed the medication after being diagnosed with ADHD. "The Adderall was key to my disordered eating, as it allowed me to control when I'd get hungry. I would smoke a bunch of pot and binge on cereal or pizza in the days leading up to an appointment with my GP, then fast after I got my prescription refilled to make up for it."
Laura's exceptional story proves that patients need to be considered on a case-by-case basis, but she is just one of the many over- and normal-weight anorexics who didn't get the treatment, or even recognition, they deserved from their doctors.
Until 2013, amenorrhea, the absence of at least three menstrual cycles, was required to diagnose anorexia. Not only did this exclude those who weren't severely underweight, it immediately ruled out the possibility that males like Luke*, a 17-year-old student from Canada, could suffer from anorexia. Though the amenorrhea criteria has now been removed, BMI still hinders the diagnosis of males. This is because men are more likely to have a greater muscle mass than women, making BMI is a misleading measure of a man's health.
"My family doctor didn't recognize the severity of my disorder because I was technically at the low end of the healthy BMI range," says Luke. "Since I have a large amount of muscle mass and am taller than average, BMI isn't terribly useful in my case."
Like Valdez, Luke was also spurred on by the diagnostic weight criteria. "Being sick enough to be admitted to hospital was one of many goals," he says. "My desire to be sick enough for hospitalization came from wanting to be the 'best' anorexic possible."
People didn't worry about me, they praised me.
Yet it is not just doctors and psychiatric associations who have to change their attitudes. Luke says his family and friends didn't notice the severity of his disorder. Though society is now more understanding of male anorexia, the concept of a "fat anorexic" is still entirely alien.
It is this culture that means Alex*, a 19-year-old transgender student, is reluctant to seek help. "I try to live off like, one apple a day," she says. When she has the energy, she rides her bike as a form of exercise. Despite this, she weighs 264 pounds. At five foot eight, this makes her BMI 39.5, well in the "obese" range.
"I haven't tried to get help at all yet," she says. "I doubt they'd take me seriously. Sometimes it's hard to see it as a problem. I mean, I am losing weight. That's good. It's hard to want to be better because it feels good to make progress no matter the cost."
Alex's statement highlights the dangerous way society views weight loss. If a larger person decides to lose weight, they are admired for the outcome regardless of their methods. When English reality TV star Lauren Goodger confessed to working out five times a day on just half an apple and a boiled egg, she was lauded for her "hot body secrets" in gossip magazine Closer.
"People didn't worry about me, they praised me," says Valdez. "Had I been a normal weight and then gotten so thin where I was underweight, perhaps the concern would have been there. But I was obese. People didn't worry about it."
Perhaps the most damning aspect of the diagnostic criteria isn't the way it makes doctors and society view sufferers, but the way it makes sufferers view themselves. People with highly disordered eating can easily convince themselves they don't have a problem because they don't fit into the narrow definition of anorexia.
"It's hard for me to claim I had an eating disorder," says Valdez. "Do I really deserve to say I had an eating disorder? Rationally speaking, of course I do. But a part of me really doesn't believe it."
Valdez did suffer, and her story proves that the way we view eating disorders has to change. A person can be anorexic at any size. Denying that means denying sufferers the help they so desperately need. It means waiting until the disorder is in its worst possible iteration before offering a cure. It also means putting people's lives in danger. If you suspect someone of suffering from an eating disorder, it is their psyche, not their physique, that doctors should scrutinize.
"Hopefully someone might see my story and recognise a change in their own loved one," says Valdez, "that same struggle and pain, and they can start a plan for recovery before it's too late."
* Name has been changed