Having an eating disorder can be a lonely experience at the best of times. But imagine if, despite having a medical diagnosis, you felt you were at the back of the queue because you weren’t worthy enough of help; because clinicians didn’t think your case was serious enough. This is what can happen if you are one of the estimated 50% of people of those diagnosed with an eating disorder whose condition doesn’t fall into the familiar classifications of anorexia or bulimia.
Until 2013, such conditions were classified with the generic term “eating disorder not otherwise specificed” (EDNOS). A 2009 study found people in this category were more likely to die than those with the specific named disorders.
Speaking from personal experience, I can say that being given such a diagnosis does not make you feel good about yourself. Nor does trying to explain to people how you feel when they think your problem can’t be that serious because it’s not anorexia or bulimia.
It is an almost self-fulfilling prophecy when you think people don’t take your illness seriously. You start to believe it too, and the negative emotions about yourself become more prevalent. Then the eating disorder can come back and really hit you.
What are the ‘other’ eating disorders?
In the last few years, psychiatrists have made more effort to classify these conditions, as well as providing diagnoses along more equal gender lines and relying less on body mass index. In 2013, the American Psychiatric Association took the long overdue step of redefining anorexia and bulimia and creating three new categories of eating disorder from a previous generic “other” group. The first, binge eating disorder has become better known in recent years and is thought to affect around 3% to 5% of American females and 2% of American males at some point in their lives.
Sufferers lose control of what they eat and binge on large amounts of food. The severity of the disorder depends upon the number of binges per week. Unlike with bulimia, binge eating disorder patients don’t purge themselves of the food through vomiting or laxative abuse. As a result, the additional calories consumed are stored by the body and obesity, high blood pressure, high cholesterol, heart disease and diabetes can follow.
As with all eating disorders, the causes of BED are complex and differ from person to person, but generally revolve around low self-esteem, lack of control in life, loneliness, body dissatisfaction and trauma. Help usually takes the form of psychological treatments such as therapy, as well as encouraging the patient to make changes to their life such as exercising and healthy eating. The chance of recovery is good after treatment but, as with all eating disorders, the big issue for sufferers is realising there is a problem, getting help and making the changes needed to sustain improvement.
The second new category is “other specified feeding or eating disorder” (OSFED), which is in essence a redefining of EDNOS but with the inclusion of five sub-groups: atypical anorexia nervosa (where weight is not yet below normal); binge eating disorder of low frequency and/or limited duration; bulimia nervosa of low frequency and/or limited duration; purging disorder (where sufferers purge themselves of food but don’t binge beforehand); and night eating syndrome (where patients consume excessive amounts of food at night).
On the surface, these new sub-categories appear to offer people a better way of discussing their illness. But there is a chance this group will contain people that don’t otherwise fit the system and could become a new dumping ground, as I felt with EDNOS.
Without parity between OSFED and the other “full” classifications, it is hard to see how we can escape situations where patients feel they must lose or gain even more weight to get the help they need. However, an initial study has indicated that the new classification criteria could reduce the number of people placed in this general category.
The final categorised eating disorder is that of “unspecified feeding or eating disorder” (UFED), which again indicates behaviour that doesn’t meet the full criteria of any of the other disorders. This can be used by doctors to categorise people initially before more knowledge is gained. Some people will also suffer from an eating disorder that doesn’t fit with any of the other categories. One leading psychologist has written that this occurs in around 1 in 150 of her patients.
While it’s easy to get bogged down in the numbers of diagnoses and mortality rates or the intricacies of different classifications, the greater lesson is that all eating disorders have potentially life-changing or life-ending consequences.
The men I have interviewed for my upcoming study on male anorexia have all experienced huge upheavals and challenges that have affected their employment, education and personal lives. Eating disorders can affect anyone of any age, gender or ethnicity, and the best ways to combat them are through early intervention and greater cultural knowledge of their causes and effects.
If we can raise awareness that eating disorders stretch far beyond the much publicised and inaccurate stereotypes, such as the favourite one of dangerously thin teenage girls acting under pressure from media images. Then perhaps those affected will be more likely to seek treatment and find greater support when they do.