Do People With Anorexia Realise How Ill They Are?

“Well, I was told I had that once.” My daughter rolled her eyes when I mentioned anorexia. It was clear in that moment that she didn’t really believe she’d ever been unwell, she thought that the professionals had somehow got it wrong and she certainly didn’t have anorexia now.

It was five years earlier that my daughter had received a diagnosis of anorexia nervosa. The eating disorder had caused enormous mental distress to her— and almost broken our family. Her flesh melted away as she stopped eating; downy hair grew on her body in an attempt to keep it warm; her heart wasn’t working as it should. In short, her life was in danger.

Yet here she was, half a decade later, unable to see that she’d ever been ill at all.

This aspect of anorexia has a name: anosognosia. Never heard of it? Neither had I until recently. Many describe it as a ‘lack of insight’. Merriam Webster defines it in this way:

It’s curious that Merriam Webster mentions schizophrenia and bipolar disorder in this entry but not anorexia nervosa because around 50 per cent of people with schizophrenia are thought to have anosognosia and around 40 per cent of people with bipolar disorder, whereas in anorexia nervosa it has been reported that over 70 per cent of people experience it in the early months or years of their illness. In fact, you could say that in most cases it’s one of the defining characteristics of the condition.

Despite this, I only heard the word ‘anosognosia’ a few months ago. It was never mentioned when my daughter was in treatment, nor was my family introduced to the concept — all despite the fact that my daughter was in Family Based Treatment and I was tasked with her re-nourishment. Looking back, this seems an extraordinary oversight.

Although anosognosia is not foremost in most people’s understanding of anorexia, I believe it should be front and centre because it is one of the main reasons why the illness is so hard to treat: it’s excruciatingly difficult to persuade someone to make the changes needed to recover if they don’t believe there’s anything wrong.

What Does Anosognosia Look Like?

So how does this mysterious phenomenon manifest in someone with anorexia? Well, the eating disorder can play tricks with your mind in the most dangerous of ways.

People who have recovered talk of being hospitalised and not having a clue why they’re there because they feel completely fine. Some report having received the news from a medical professional that their life is in danger with a shrug. Others describe a sense of invincibility, an awareness of the peril they are in but a sensation that they are totally invulnerable to it.

Body dysmorphia is another card up anorexia’s sleeve. I suspect it may be part of the same phenomenon as it is also an inability to see the true state of your body. Perhaps the classic idea that ‘when someone with anorexia looks in the mirror, they see themselves as fat’ would be more accurately rendered as ‘when someone with anorexia looks in the mirror, they don’t see themselves as dangerously thin.’

It’s no wonder that paranoia can seep in. It must be pretty confusing to be bombarded with the desperate pleas of loved ones as they implore you to eat, or the instructions of doctors that you must stop exercising, when you feel, and in your mind look, absolutely fine.

Inevitably this can lead to feelings of frustration and rage — “Why is everyone lying to me?” And sadly this can drive some away from those who love them the most and who are best placed to help them find their way back to health.

Reinforcing the feeling of good health in some is the lack of awareness of low energy or cold, or even an inability to feel pain, all of which back up the belief that nothing’s wrong. Anorexia Myths contributor B explains that awareness of some of his physical symptoms only came with recovery:

“One day it occurred to me that my feet felt strange. Eventually I realised that it was because they didn’t hurt. I didn’t recognize that feeling as pain before, but once it was gone it was unmistakable.”

Some people say that, even years after recovery, they still can’t comprehend how ill they were and find themselves doubting that they ever had anorexia at all.

Anorexia truly is an extraordinarily good magician.

What Causes Anosognosia?

Anosognosia is a neuropsychiatric disorder, which means that it is a mental disorder caused by a brain malfunction. As well as occurring in people with mental health issues, it can manifest in stroke patients or people with alzheimer’s. It’s thought that it’s related to the area of the brain which processes self-image — the frontal lobe. When this is not functioning properly, your brain can struggle to update your self-image, and this explains why someone who is terribly ill with anorexia might feel healthy. They are essentially experiencing an outdated version of their body. It’s a bit like looking up at the night sky. We might assume that our view is what the stars look like now. In fact, we’re looking at the past.

Like most symptoms of anorexia, anosognosia develops as a result of malnutrition. Put simply, a starved brain does not function as well as a well-nourished brain. There’s pretty solid evidence that overall the brain of someone with anorexia nervosa shrinks during the course of the illness. The good news is that this seems to be reversible. For many people, the anosognosia seems to wax and wane during the course of the illness, and they can experience periods of lucidity even when they are still in a poor physical state. This could offer opportunities for the idea of recovery to seep in.

It is possible that there is an evolutionary reason why anosognosia occurs in people with anorexia nervosa. The Adapted-to-Flee Famine Hypothesis by clinical psychologist and evolutionary biologist Shan Guisinger proposes that anorexia nervosa is a genetic adaptation to famine, and the behaviours triggered by weight loss are ancient survival mechanisms. In a nutshell, someone in prehistory experiencing famine might have survived if they kept moving until they found a sustainable food source. Guisinger suggests this is why some with anorexia have the compulsion to move or exercise excessively and why they only eat small amounts of food — just enough to keep going until they stumble upon a herd of buffalo.

It would clearly be helpful for someone who is escaping famine not to be aware of the danger their body is in, or of the pain or cold it is suffering as a result of malnutrition. If you feel pain you stop moving. If you feel cold, you stop moving and curl up in a ball. If you feel unwell, you stop moving and rest. If you are in a famine, all of these actions would probably result in one outcome: death. To survive a famine, you would move to a place where there is food and would not stop on the way for longer than absolutely necessary.

What Does This Mean for Recovery?

While it might be helpful in a famine, anosognosia is not at all helpful in anorexia recovery. If someone doesn’t realise they’re ill, they won’t seek help. If someone doesn’t know they’re malnourished, they won’t eat appropriately to reverse the situation. If someone can’t feel the pain in their bones, they won’t stop exercising.

It seems likely that this aspect of the condition, like so many, is made worse the more malnourished the person is. This reinforces the idea that full nutritional rehabilitation is the first thing that needs to happen in treatment. Treatment must be a compassionate, firm insistence that eating and weight gain happens. Gradually, the anosognosia should lessen as weight is restored, and then motivation to keep going can come from within. But until the anosognosia is addressed through re-nourishment, any therapy is going to be, well, just talking.

In under 18s, re-nourishment will normally be via Family Based Treatment, with parents or carers taking over the young person’s food intake. With older people, like my daughter, this is more difficult. How do you help an independent adult who can’t see that they have a problem?

This is what we’re going through now and there is no easy answer, but it seems to me that there is a case for treatment providers insisting that the person with the eating disorder nominates another adult to advocate for them. Of course, this is dependent on help being sought in the first place. Otherwise parents and loved ones should do all they can to keep open the channels of communication, keep trying, keep speaking kindly and gently explain what anosognosia is. Try to appeal to the logical part of your loved one’s brain, the part that understands how much you love them and that you really do have their best interests at heart.

Even if they can’t see it right now.