The essence of eating disorders is that they are not related to food, nutrition or weight. Eating disorders, in fact, are associated with the management of unbearable feelings. It took years of lengthy hospitalizations before I was able to access therapy that helped me understand this and find other ways to manage my well-being.
I am now a volunteer with Beat, the UK’s leading eating disorder charity, and together with Healthcare Improvement Scotland have helped create a new guide for Scotland on diagnosing and treating eating disorders. My story is not unique: I hear time and time again that access to appropriate treatment is delayed due to a misunderstanding of eating disorders. Professionals focus too much on symptoms, how much a person eats or how much they weigh. Another hurdle is focusing on symptoms and physical health. Once they reach a certain weight, they are considered “recovered” and support is discontinued at the moment when it is most needed. This is the most difficult stage of recovery. All coping strategies have been removed, but mentally things can feel very much the same. It is generally accepted that weight is only one of the indicators of health in the treatment of eating disorders, and yet it is too often confused with recovery because it is easy to measure. Thus, terms such as “recovery” and “relapse” lose their meaning because “recovery” means “weight regain” and “relapse” means “weight loss after treatment.” Too little attention is paid to the psychological changes that are needed by the time people finish treatment. Also, there is no agreed definition of recovery. We need more research and more conversations with patients. I had been in treatment for over 10 years before a psychiatrist asked me what I wanted from my treatment. Perhaps recovery would not be so difficult to determine if patients were more actively involved in treatment.
My own treatment time was often fraught with medical staff expressing dissatisfaction with me, and I felt guilty and isolated. In fact, I was not at all “treatment resistant” as they described it – I just needed a different treatment. It is necessary to stop blaming patients for ineffective treatment. Not everyone responds the same way to treatment. We have made a conscious decision in the guidelines to avoid using phrases such as “treatment resistance” or language that blames patients. I hope this will lead to a much needed change in practice and patient experience. When I think of the patients I have met, I think of people who are determined, thoughtful, selfless and caring. However, they all have stories of being called selfish, manipulative and controlling by medical professionals. These are people who almost always want to get better but feel paralyzed to the point where the fear of change outweighs the fear of staying the same. I started to get better when I was more afraid of staying the same than changing.
The facts show that no matter how long someone is unwell, change is possible and there is hope for life after an eating disorder.
Ellen Maloney is an ambassador for Beat, the UK’s leading eating disorder charity.