We Cannot Continue to Deny Treatment to People With EDNOS

“There’s nothing we can do to help you at your BMI.”

I turned to leave, but before I reached the door, I’d turned around and said, “You know what this means, right?”

She knew. There was nothing she could do to help me. Not until I was thinner.

***

I’d had an eating disorder as a teenager and, through some miracle, had come out of the other side. I still fought a crushing depression, but medication was helping manage that to a level where I could shower, leave the house and go to work.

Then in 2015, it was back. Just like that. I’d avoided scales for years, scared that knowing my weight would send me right back down the rabbit hole, one from which I’d barely escaped before. But I was hurting, and I was bent on self-destruction.

Just like that. Hidden scales, walking for hours in the freezing cold, obsessively logging my calories and making graphs of my weight. But somehow, in the middle of free fall, a little piece of me fought through the tirade. I knew I had to reach out with that last little bit of me to tell somebody I was going to fall hard and fast if I was left to my own devices.

So, I did the sensible thing. I went to my GP. I told her about my history and about how I felt now. How worried I was that I could go back to that utter desolation and how much I wanted to avoid it. She referred me to the local eating disorders clinic for an assessment.

I told the assessor everything. My entire life story – at her request, I might add – and what I thought they might be able to help me with. It was at that assessment that I knew I was alone in my relapse. For all of the psychological stress and trauma I was going through, there was one simple thing that meant I could not get any form of treatment. Something so trivial, at that point. My weight.

See, I was thinking and acting and behaving like a person with an eating disorder, but I fell in to a zone so few know how to treat. I fell into the EDNOS category.

EDNOS, or Eating Disorder Not Otherwise Specified, is a catch-all term used for eating disorders that don’t fit the diagnostic criteria for anorexia nervosa or bulimia nervosa. Because my weight was in the healthy BMI range, this particular service could not offer me any help, despite my troubled mind and increasingly self-destructive behavior.

Treatment for eating disorders comes in many forms across the U.K., with each area being part of a particular NHS trust. Each trust will have its own guidelines, diagnostic references, treatment centers and therapies offered. This is more than a mild inconvenience – the lack of consistency unfortunately means there are areas which offer little to no help for people unless they are considered “severely anorexic.” A study published in 2009 suggests there is a higher mortality rate among patients diagnosed with EDNOS than either bulimia nervosa or anorexia nervosa.

Now, to many, this may not seem like a particularly big deal. But when you are in the midst of battling a mind-possessing demon that constantly berates you for almost anything you can think of, being told there’s no help for you is interpreted as, “You’re not sick enough.”

So at the end of the assessment, I was absolutely devastated. I had tried to do the sensible thing: reach out about disordered thoughts to hopefully get some help before things got too bad; and I got shut down, there and then, because my weight was too high.

In disbelief, I asked the assessor, “You know what this means, right?” She did. We both did. But she was powerless to provide any other help – she was not the one who set the process, she merely followed it.

What it meant? It meant the demon inside my head had plenty of fuel. “You’re too fat. Too fat to have an eating disorder. Too fat for anyone to care. You should prove to them how sick you are. You just wasted nearly two hours of their time when they could have been helping somebody who actually needed help instead of you. That’s it. You’re done.”

I wasn’t furious then, but I am now. Now, I am getting the help I needed two years ago. Now, I am finally confronting those demons. Now, I am learning how to silence the voice in my head that tells me I’m worthless. Only now. Only after I went to the hospital for suicidal ideation. Only when they had increased my antidepressant dose. Only when I was “thin enough” for treatment. When I was “sick enough.”

I lost that entire period of my life. Honestly, I have so few memories of that time, just snippets here and there, interspersed with a growing alcohol dependency and complete lack of will to live.

After that assessment, my attitude towards recovery changed. I didn’t want it. I tried, I failed, I gave up. I was in the depths of it, and it was my eating disorder and me, us against the world. What I wish I’d have known at the time is that a diagnosis of EDNOS, or OSFED, or atypical anorexia, or BED, or purging disorder, or pica, or ARFID – they are all valid diagnoses. They are all life-affecting mental illness. They all deserve treatment and recovery, and there is no eating disorder “hierarchy.”

Looking back now, there are many things I can say I would do differently. When I was discharged from the assessor back to my GP, I would have chased for follow-ups. I would have gone to support groups, reached out to other people who had tried, almost pre-eminently, to curb those disordered thoughts, and asked them for help. But everything is easy in hindsight.

We, as mental health ambassadors and as people, need to try to reduce the stigma surrounding and increase the awareness of eating disorders that don’t fit a certain diagnosis’ criteria. We need to encourage our local health trusts to provide support for people with these illnesses, not to shut their doors to them when they are at their most vulnerable.

If you or someone you know is struggling with an eating disorder, you can call the National Eating Disorders Association Helpline at 1-800-931-2237.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741. Head here for a list of crisis centers around the world.

Follow this journey on Lily Mae Recovery.

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Photo by Caleb George, via Unsplash