Myth: Being ‘In Recovery’ is the Best You Can Hope For

There is much chatter in the eating disorders world about what the words ‘recovery’ and ‘recovered’ mean. Many believe that everyone should define their own recovery and that what recovered means is different for different people. I’m not sure that I agree. In fact, I believe that this idea is dangerous. It is letting clinicians off the hook and, worse, keeping their patients locked in the illness indefinitely.

So, what does being ‘in recovery’ from anorexia mean, what does ‘recovered’ mean, and what is the difference?

Well, when there is confusion over words or phrases, I always believe that the dictionary is your friend. So, let’s see what the Oxford English Dictionary (OED) has to say on the matter.

Recovery, then, is the process of recovering, in anorexia this would be the gradual return to full mental and physical health. It would be the journey not the destination.

I believe that people have borrowed the phrase ‘in recovery’ for anorexia from the field of addictions. I have no idea whether this is still prevalent, but many once believed that if you’d had a problem with addictions, you would remain ‘an addict’ forever. This meant that you would be in perpetual recovery, and as such would have to ‘fight your demons’ every day for the rest of your life.

Transposed to anorexia, ‘in recovery’ means that you will inevitably be battling the thoughts and feelings about weight loss and restriction every day, forever.

Of course, this evolved from the idea that anorexia nervosa is some kind of ‘coping mechanism’ relating to something else in that person’s life — as many perceive addiction to be (although knowing that there is a genetic element to both conditions, I’d suggest that this a simplistic reading at best).

I am not a fan of the term ‘coping mechanism’, largely because it is psycho-jargon, and I don’t like jargon full-stop. In anorexia, the idea is that there is some other issue in the person’s life that has led to the self-harming behaviour. And therefore, when the chips are down, someone who has had anorexia will inevitably turn to their old ‘coping mechanism’ and start restricting food or over-exercising again.

But what if anorexia nervosa isn’t a response to something else? What if it’s simply an inbuilt reaction to starvation that is triggered in that person when they lose a certain amount of body fat and/or their body goes into energy deficit? What if it’s not, to borrow from eating author Tabitha Farrar, ‘expressions of psychological poltergeists’ but simply a bodily reaction to malnourishment which manifests in unusual thoughts and feelings around food and body size?

If that is the case, there really should be no need to be ‘fighting your demons’ for the rest of your life, should there?

So, how do I define ‘recovered’? Well, let’s take another look inside the OED:

Recovered then means ‘returned to a normal state of health, mind or strength’. In anorexia, it would be a normalisation of all three.

The operative word in this sentence, of course, is ‘returned’. Nobody is born with anorexia nervosa. It is not a lifelong condition. It can develop at any time in a person’s life but typically begins sometime after puberty. That means that there was a time of relative ‘normality’ around food before the illness began. A time before anorexia existed in that brain and body. We should be aiming for this again.

So, the definition then of being ‘recovered’ from anorexia is simple: the person no longer has anorexia. They no longer have intrusive thoughts about restricting food or being smaller; they no longer have to exercise because not doing so is unthinkable. Anorexia, quite simply, is gone from their life.

It’s important to note that this doesn’t mean that this person is not in danger of relapse. As there is such a strong genetic/biological element to this illness, it seems likely that there may be a lifelong susceptibility.

But that doesn’t mean you are ‘in recovery’ or ‘fighting your demons’ every single day. It doesn’t mean there will be an ED voice harassing you over ever decision around food. It doesn’t mean that you will read the calorie label on every packet and make decisions about what to eat based solely on a number.

It simply means that a little more vigilance may be required around nourishment. Restrictive diets, skipping meals or fasting are clearly not going to be a good idea for someone with a susceptibility to anorexia. If you enjoy exercise once recovered, great, but you will always have to remember to nourish your body appropriately. Illness can cause weight loss too, so it’s important to pay particular attention to how you’re feeling mentally at this time.

In an ideal world, someone would leave treatment for anorexia with a practical toolkit in case the thoughts and feelings begin to creep in again. They should be ready to address those thoughts and feelings before they make themselves comfortable. But none of this means that anorexia is ever-present, or that you will have to constantly ‘battle your demons’. You can live a normal, happy life, free of the illness. Being recovered is absolutely possible. There are many people who are living proof of this.

Sadly, I have seen numerous clinicians state that they believe that some will have to learn to live with anorexia for the rest of their lives. The best they can ever hope for is to be ‘in recovery’, they say. This is partly because of a misunderstanding that a longer duration of illness means recovery is unlikely. There is increasing evidence that you can recover completely from anorexia no matter how long you’ve had the illness.

I can see how being able to live independently out of hospital while still battling anorexia is better than being in a hospital bed on death’s door. Many parents are understandably relieved to see their child in reasonable physical health even though they are fairly unrecognisable from the person they were before anorexia struck — ‘in recovery’, so to speak.

My experience is slightly different, which is probably why I believe that recovered is the only outcome we should be aiming for.

My daughter was never hospitalised. She was never tube fed. If you saw her in the street, you probably would not have known she had anorexia. But she did. She had tremendous anxiety around food, intense fear of weight gain, distress about her body. She cut herself off from family and friends. She was miserable, and she was completely unrecognisable from the kind and loving person she had been before the illness struck.

If she had been hospitalised for the illness, this state of existence would probably have been described as being ‘in recovery’. But she wasn’t really in recovery at all in that she wasn’t showing any improvement. She was simply maintaining anorexia at a weight that wasn’t necessarily compromising her physical health. She remained as ill as she’d ever been, for years. Treading water. Existing in a state of perpetual suffering.

Look, of course it is far better to be out of physical danger than to be at death’s door. In that sense, this is a better place to be than spiralling downwards. And it’s undoubtably true that many people have worked enormously hard to get to that point. I do not intend to dismiss their struggle, nor their courage, in any way. I certainly would never suggest that someone has failed by not being recovered after treatment, just as I wouldn’t suggest that someone with cancer had failed if their tumour didn’t respond to chemotherapy.

I just want more for them. I want them to be free of their suffering. Completely free.

And this is why I am saddened to read comments like this from clinicians who work with people with eating disorders:

‘I never say that recovery is the only end point of anorexia. It can also be about helping people who develop severe and enduring anorexia to improve their quality of life and reduce anxiety, and one way to do this is to take the pressure off full recovery,’ says psychiatrist Dr Hubert Lacey.

‘Severe and enduring anorexia’ is not an official diagnosis, although many clinicians adopt it as if there is evidence that the longer the duration of the illness, the less likely it is to respond to treatment. As I said earlier, there’s increasing proof that length of illness is NOT a barrier to getting better.

But let’s talk about this idea of taking ‘the pressure off full recovery?’ What this means in reality is allowing the disease to remain in the driving seat.

Anorexia is an illness which thrives on fear, and I believe that the behaviour of someone with anorexia is driven by a fear response, deep within the brain that they may not even be aware of. This is explained by psychiatrist Dr Guido Frank:

‘when we eat but suddenly the proverbial tiger stands in front of us, we have to suppress the eating drive and stop eating quickly and run to preserve our life. This circuitry is set in motion by fear, directed from a brain region called the ventral striatum (a dopamine rich area) to the hypothalamus, and it involves dopamine, a brain neurotransmitter. The fear of weight gain, we believe, triggers this mechanism and suppresses eating. However, more control over eating and food restriction further drive the body to stimulate eating, which further triggers anxiety and further stimulates food avoidance, and now you are stuck in a vicious cycle.’

Of course, if you are intensely afraid of something you will do absolutely anything to avoid it. For example, I’m scared of very large dogs — the kind you probably couldn’t beat in a fight. If there is a big dog in a particular park off its lead, I’ll probably walk round the park, taking the long route just so that I don’t have to face my fears.

If you give someone with anorexia the opportunity not to confront their greatest fears (eating/weight gain), they will naturally take it too. Of course they will. But you are not ‘taking the pressure off’ by saying it’s okay, you don’t have to aim for full recovery/recovered; you are simply keeping someone trapped in the illness, in purgatory, perhaps for the rest of their lives. Because the only way to overcome a fear is to confront it head on, right?

In my opinion, a clinician not aiming to get their patient recovered is bad medicine. If the patient can get better, the doctor’s job is to help them achieve that. And you do that by treating the illness, not allowing it to continue unchallenged.

To return to the cancer analogy of my last post, I have never heard of a surgeon ‘taking the pressure off full recovery’ from cancer by not bothering to put the patient through the stress of removing a tumour.

Have you?