Atypical Anorexia: Do We Need a Different Diagnosis?

Two patients. 14 years old. Female. Similar backgrounds, similar demographics. Libby wants to lose weight. She has lost a significant amount of weight in the last 4 months. Her parents say she’s been cutting out entire food groups, won’t eat anything she classifies as ‘junk food’, won’t eat in front of other people, and is skipping lunch at school. The diagnosis is anorexia nervosa. Black and white. Almost textbook. Open and shut. The treatment is standard - family therapy for anorexia nervosa, known as FT-AN. We can start next week. Her parents cry with relief; now they know what’s going on, they know what the treatment will be, and there’s no more debate: it’s anorexia, that’s what the professionals say. They buy the books and listen to the podcasts, and start learning about the illness that has made them feel so powerless for so long.

Melody also wants to lose weight. 14 years old, Melody has lost some weight in the last 4 months, but it’s still hovering within a safe range. Her parents say she’s cut out entire food groups, won’t eat breakfast, lunch, or dinner, and refuses all meals her parents give her. They found some wrappers in the bin in her room, and realised Melody was secretly eating some chocolate bars at night after everyone had gone to sleep. She didn’t eat for several days and then ate a few slices of pizza on the family’s takeaway night. The diagnosis is atypical anorexia (AA). Grey. Half open, half shut. A footnote in the textbooks. Her parents look confused, still holding their breath. ‘What does that mean?’

‘It means that she’s suffering from anorexia, but it’s not going to follow all the rules of traditional anorexia. It might look a bit different. Her weight might not drop as low as some other young people. She might eat different foods than we’d expect. But the treatment is the same, family therapy for anorexia nervosa, known as FT-AN. We can start next week.’

A few weeks into treatment, Libby has made some good progress. As have her parents. They’re giving Libby every meal as it should be eaten, not as they think she’ll eat it. She’s managing most of it. They’ve gotten into a routine, and Libby’s weight has stopped going down. Now that she’s been physically stabilised, there’s more space to talk about her emotions, her experiences, and the reasons why she ended up here.

Melody’s clinicians are worried. She is eating less than she was before. Her weight has down tooled hugely. Her parents say things have gotten worse at home. Melody is spending more time looking in the mirror and crying. There are huge arguments at every meal. Foods she was eating are now outright refused. The chocolate bar wrappers are nowhere to be seen.

Across the board, people react the same way to a diagnosis of atypical anorexia. Eating disorders are incredibly competitive - they feed off of comparisons. That feeling the rest of us get when we see someone in better shape than us - you know, that slightly inferior, annoyed feeling that makes you wonder if you should start doing more sit-ups? That feeling is magnified a hundred times for someone with anorexia. They want one thing: to be the best. They want to be the sickest person, the lowest weight, and eat the smallest amount of calories. And most of the time, when they hear the word ‘atypical’, their eating disorder hears, ‘failure’.

People with a diagnosis of atypical anorexia describe feeling like they couldn’t hack ‘real’ anorexia. They feel like they came in second and out there, somewhere, there’s a big, shiny trophy with the words ‘Real Anorexic’ on it, and they walk away from their diagnosis in pursuit of victory.

So why does this diagnosis exist? Atypical anorexia started becoming more widely used in 2013 when it was added to the DSM-5. According to the DSM criteria, the difference between atypical anorexia and standard anorexia is that someone with AA will not be underweight. Most of the time, when I think someone has atypical anorexia, I won’t say it. I don’t want to cause the chain of events that Melody experienced. Maybe the diagnosis is accurate, but unless something will help the patient, why would we do it at all?

There have been a few times when I’ve actually found it helpful to diagnose someone with AA, and each time it was the same reason: either the patient or their parents refused to believe the patient had anorexia. This was either because the patient’s weight wasn’t that low, or it was decreasing at a very slow pace, or because the patient was still eating some foods you wouldn’t expect someone with anorexia to eat, like chocolate bars, crisps, a slice of cake on their birthday.

Some parents bring their child into ED services already sure that the diagnosis will be anorexia nervosa. They’ve already started reading about it, and while the diagnosis scares them, they want to call it what it is, so they can start tackling it. Others might be earlier on in their journey. No parent would want their child to suffer from anorexia, and often, they will try to come up with any other reason why their child isn’t eating. Perhaps they had anorexia themselves in the past, and they can’t face the idea that their child will go through what they did. Perhaps they know just how difficult anorexia is to treat, and they’re hoping with all their might that the problem is anything else.

So, when I tell them their child has anorexia, and we will treat them for it, they sometimes protest. ‘Maybe I could just get her a dietitian?’ they say hopefully. ‘Someone to help her choose better foods?’ Or, ‘she’s always been a picky eater, maybe it’s just a phase?’ In these moments, I go through the criteria for anorexia with them, so they can see how many of their child’s behaviours are linked to anorexia. ‘But she’s still eating!’ they say. ‘She had potatoes with her roast on Sunday! Don’t anorexics hate carbs?’

At that point, I may ask to speak to them in a different room, away from the child. ‘It may be atypical anorexia,’ I explain, gently. ‘Which means she’s not always going to do things that you’d see in a textbook. But the risks are the same. The way she’s thinking will be the same. And the treatment is the same.’ When we come back together in the same room as the child, the parents are able to accept the diagnosis, and if they believe it, it’s all the more likely the child will believe it as well, to understand how unwell they actually are.

Sometimes, the child simply will not believe they have anorexia. Actually, this is quite common. There are many different ways people respond to their diagnosis: sometimes, their eating disorder ‘voice’ is so strong that they think, ‘I couldn’t possibly be anorexic, this nurse just wants to make me fat.’ Other times, the voice is loud but they still have enough of their own voice left that there’s reasonable doubt: ‘Well, I guess I can see that some of what I’m doing is anorexic… I just don’t feel like it’s bad enough.’

And that’s the main concern. Most of the patients I work with say this to me. Multiple times a week, someone says to me, ‘I’m just not ill enough to get better’. That’s anorexia’s trick, it convinces you that if you just follow all its rules, you’ll have ‘won’ anorexia, and then you can start eating again. It says, ‘Look, let’s just lose X amount of weight. As soon as you hit that number on the scale, you’ll know you did it, you really did it, and you can eat again.’ The problem is, that feeling never comes. You reach X on the scale, and you wait for the rush of excitement. You wait for the internal validation. You wait to like yourself again. But you don’t. The problem inside you isn’t fixed. You still hate yourself. And anorexia tells you, ‘I guess we have to keep going, then. Maybe a little bit more weight loss will do the trick.’

So it’s not uncommon for a child to have a dozen reasons why they couldn’t possibly have anorexia, saying, ‘But I haven’t even lost that much weight. I checked my BMI, and it’s normal! How can I be anorexic?’

Then, it can be validating to tell them that yes, their eating disorder might be atypical, it might not fit the exact image of anorexia that they have in their head. But there’s an important caveat: you explain that atypical anorexia is every bit as serious as standard anorexia, every bit as dangerous and that the diagnosis itself just indicates that people shouldn’t disregard their illness just because it doesn’t look exactly the same as it does in the textbook. The word ‘atypical’ can give the child new language to describe what they’ve been doing. Anorexia likes things to be very black-and-white, the rigidity around rules is what makes someone feel more in control. The word ‘atypical’ can allow the child to realise that sometimes, things will fall into the grey area.

Everything we do as eating disorder clinicians should be centred around the patient. Despite having similar conversations every day, seeing similar presentations each week, and using the same treatment model all the time, every patient is unique, and our treatment needs to be individualised. For us, as clinicians, the term atypical anorexia might be useful. If we put it in our documentation, it helps to have a record of your rationale for your treatment choices for a patient. In the NHS, there are strict rules about what illnesses you’re being funded to treat. Sometimes, there are entire discussions around this. ‘If there’s no weight loss, should we be treating her?’ ‘If they’re binge-eating, are we allowed to treat them?’ There are no simple answers to this, and every clinician responds differently.

The way I find my answer is fairly simple: will eating disorder treatment help, or not? Because if I feel that yes, the treatment model we use would actually really fit well for this patient, that’s telling me what I need to know. And as clinicians, we should always be recovery-focused, and not get hung up on terminology if it’s going to get in the way of treatment. And sometimes, writing ‘atypical anorexia’ in someone’s file helps confirm to clinicians and whoever else might be reading it, that this patient might look different to what we expect, but we’re still worried about them, and they’ll get worse if we don’t treat them.

But what things always come down to is support. As clinicians, we cannot be diagnosing patients and then move on without taking time to hear the patient’s thoughts, and letting them work through what this new label means to them. The support should start there, at that moment, giving a diagnosis and explaining what it means, and exploring what it feels like. All too often in ED services, we drop a diagnosis of AA on them like a grenade - pulling the pin out, throwing it at them, and running away to avoid the explosion. We might think the blast will clear out all the mess, but we’re going to come back to one heck of a wreckage.