Eating Disorders Come in All Shapes and Sizes in Mind

Brought to you by

It can be easy to imagine everyone with an eating disorder to look very skinny, but that is not always the case. Sarah*, 23, shares her experience with EDNOS.

Sarah's Story

I have an eating disorder. I don’t look like I have an eating disorder, but I do.

In an appointment with my GP to discuss other mental health problems, I mentioned that I was struggling with my eating habits. Unfortunately, even in most doctors’ eyes, eating disorders seem to be determined only by numbers rather than by mental distress or effect on daily functioning.

My weight wasn’t low enough to be diagnosed with anorexia. I didn’t purge enough to be diagnosed with bulimia. I purged too much to be diagnosed with binge eating disorder.

Luckily for me, my GP took my concerns seriously and he referred me to the eating disorder service to get help. So we waited. And waited. And waited some more. During this time, as is the case with many people, my relationship with food got worse.

After 3 months of hearing nothing, my GP advised that we would both call the eating disorder service to ask when they thought I would hear back. I was told that the waiting list was very long and that those whose weight was of most concern were given priority. So we waited a little more. Six weeks later we received a letter telling me that my weight was not concerning enough and that I would not be taken on as a patient.

The problem was that I wasn’t underweight. I was actually obese. I restricted, purged, binged and repeated every week. I lost a lot of hair, my skin suffered, my teeth were damaged and I could think of nothing but food, but I wouldn’t receive help.

Now I know that I probably met the criteria to be diagnosed with Eating Disorder Not Otherwise Specified (EDNOS), but once I was rejected from services I didn’t receive a formal diagnosis and was left to my own devices.

I’ve been left wondering what a 'concerning' weight is. I appreciate that many people in the grips of an eating disorder are at a critically low weight and need urgent attention. Some people purge so much that hospitalisation is crucial. But at what point do eating disorder services consider a high weight to be concerning enough for treatment?

Obesity in the UK is considered an epidemic. It can lead to heart disease, diabetes, increase your risk of anxiety and depression, and has been linked to some cancers. I’m aware that you can’t tell if someone has an eating disorder just by looking at them. Not all obese people have eating disorders, just as not all 'skinny' people have eating disorders, but if you are obese and you are struggling, how do you access help?

Should you just be left to deteriorate until eventually you are unable to function at all, simply because your needs don’t match defined diagnostic criteria? What if your weight never becomes a concern, but behind your weight your health is at serious risk?

I think more needs to be done to help people who may not present with symptoms that match the criteria. Awareness needs to be increased in professional and public circles, so that symptoms can be spotted earlier and help can be provided.

Eating disorder services really need to consider how they define ‘at risk’ weights, and what this might mean to each individual.

EDNOS can be just as deadly as anorexia and bulimia and yet we know much less about it and have even less provisions to deal with it. If nothing is done about this, people will continue to fall through the net and become consumed by their illness. 

Need advice and support concerning an Eating Disorder?

*To protect privacy, thumbnail image is not of Sarah.