Why is Eating Disorder Recovery So Hard?

I remember hearing somewhat early on in my experience living with anorexia nervosa that it takes people on average four years to recover from anorexia.

At this point in time, I didn’t really know what an eating disorder was and what I did understand about them, even while living with one was to put it lightly very misinformed and stigmatised and to put it bluntly wrong!

I do, however, distinctly remember having a thought along the lines of “there is no way that four years into the future I am still going to be doing this…”

So, why fifteen years later was I still not free?

Why did I go on to spend fifteen years of my life trying to recover from something I thought I could let go of any time I chose (until I realised I couldn’t), why do some people never fully recover and many people die because of the medical complications of eating disorders or choose to take their own lives because they see no way out?

Why is recovery from an eating disorder so hard?

Let’s look at three reasons why recovering from an eating disorder is so hard and what we can do to help more people recover.

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1. People are Misinformed About What They’re Dealing With

When I lived with anorexia nervosa it took me years to truly accept that this was the illness I was trying to recover from.

I know this might sound strange and knowing what I know now it is but knowing and experiencing what I did during the illness it wasn’t so strange that I didn’t identify with the diagnosis of anorexia nervosa.

I found it very hard to accept that I was experiencing anorexia nervosa for a number of reasons. Mostly due to as I said my own misunderstanding of what an eating disorder was – which at fourteen-ish years old (and even beyond) I can tell you it was not actually my fault. Having no prior knowledge of eating disorders until I experienced one myself, I could only go off what I was told about eating disorders and what I was told was to put it lightly very misinformed and stigmatised and to put it bluntly wrong!

I was trying to change and recover from something I didn’t understand and therefore didn’t fully accept that I was trying to change or recover from that thing. Augh. Evidently a confusing and pretty non-useful way of approaching recovery because not knowing what I was working with meant I didn’t know what to actually do to recovery…

There are more parts to this because as I said the information and understanding I had about eating disorders and anorexia nervosa didn’t come from nowhere. It came from the long list of professionals who “treated” me, it came from books, it came from the media and it came from society. None of which I saw capture or accurately describe what was going on for me.

It meant that not only was I trying to fix, change and work on things that I didn’t relate to but it also meant that I was being “treated’ by people who were equally if not even more misinformed as to the experience of living with an eating disorder and what that truly meant and therefore what truly needed to be worked on in order to change things than I was…

What a disaster!

Understanding this now it is no wonder I stayed in the cycle of lapse and relapse year after year after year after year. Unfortunately, there really was no other way it was going to go when I didn’t really know what it was, I was really working to change and neither did anyone else who was trying to “help” me.

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2. The Things You Need to Fix are Unconscious

The things you need to be able to do in order to successfully recover from, move on from and live a life free from an eating disorder are largely unconscious.

Given that the current status quo is that while “mainstream” treatment may pay lip service to the idea that eating disorders are not a choice it also blatantly disregards and largely has no direct or intentional means of working with peoples unconscious minds. So far as I can tell we still just kind of hope we can educate, guilt, threaten or scare people into recovery…

What do I mean by work with our unconscious minds or fix or change things at the unconscious level?

I mean something we all know and recognise in people living with eating disorders and I’ll give an example – have you ever met anyone living with an eating disorder who has a very high level of self-worth and confidence? Likely not. In fact I’m willing to put money on the answer being a no. Especially if you were to take some time to ask them what is going on inside of their mind.

We recognise it to be true – we recognise that people need to improve their self-worth, confidence and so on but the most we offer is recognising this, paying it lip service but not actually having a means of helping someone to do this…

I remember years ago I went to a conference with a whole load of presenters speaking on drug and alcohol addiction. Every presenter spoke to the key role that improving someone’s confidence and self-esteem has on the ability for someone to fully recover from drugs and alcohol. Yet, no one had any real tangible tips or processes for how someone might go about doing this…

It seemed to happen or more often then not not happen.

It is the same in eating disorder treatment – we know it to be true. We know people are suffering with critically horrific self-worth and self-esteem issues and yet by and large we don’t have solid ways of helping people truly improve these more intangible skills.

Except we do.

Except we do have very direct and very useful and very successful methods for working with peoples unconscious minds and helping them achieve changes they want to achieve but are feeling stuck or helpless to change. The modalities are called neurolinguistic programming (NLP) and clinical hypnotherapy. Modalities that are still very much considered complementary. Where I would truly argue they need to be the mainstay of eating disorder treatment.

NLP is a type of “modelling what works” developed in the 70’s and clinical hypnotherapy which has been around for eons since some very clever people recognised that there was more to helping humans make changes in their lives then education and wanting to change both give us a means of working with someone’s “unconscious mind” ie the part of us where the eating disorder is operating (no one is consciously choosing to do an eating disorder – for more in depth information on what I mean by this read my earlier blog “What Does it Mean When We Say Eating Disorders Are Not a Choice?”). Hence why I am in massive favour of these modalities becoming more utilised in eating disorder treatment. And let’s face it we’re not doing a great job helping people recover as it is so I am not sure we have a lot to lose.  

I truly believe that combining these two modalities and working with a human being that is motivated and committed to recover from an eating disorder (even if they don’t know how or don’t yet entirely believe it’s possible) creates a situation where success is almost inevitable. Can we say this about any other modalities we use to treat eating disorders? Having lived fifteen years of my life under the rule of anorexia nervosa and truly having felt I gave every mainstream treatment option that was offered to me more than a fair shot and having gone on to work with hundreds of people if not into the thousands now wanting to recover and having tried (and failed) at all the mainstream recommendations I genuinely say no.

I have regularly reflected on the state of mainstream treatment for people in recovery from eating disorders and come to the conclusion that it is more of a miracle that people do recover and their ability to recover says more about them than current treatments.

People recover in spite of treatment and not because of it. Which is an awful thing to say about the state of treatment for an illness I am highly invested in and committed to the successful treatment of.

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3. Our World Is Not Set Up for Recovery

There’s two parts to this point.

One is that the longer you live with an eating disorder the more the people around you adapt to you being the person living with an eating disorder.

The more intertwined you become with the eating disorder or to put it more bluntly the more you are seen as the eating disorder.

This means that without realising it or intentionally doing so the eating disorder is increasingly accommodated to and you are treated as the person with the eating disorder or as the eating disorder.

That is who/what you are now.

Which means so many things and makes recovery difficult for reasons beyond what I can hope to cover succinctly here but to give you an idea of some of the unique issues this presents people in recovery are often given outs of what they are expected to do and therefore aren’t presented with opportunities to challenge the eating disorder (other than of course when they do this entirely themselves). People in recovery from eating disorders also become aware of their role and the way others perceive them (even if how they think they’re perceived is incorrect) and are often worried about what people will think and how they’ll be treated if their body changes. For example if they’re always been the “thin friend” and their recovery very probably necessitates weight gain people can have a real fear (mostly unconscious) that they’ll be rejected or loved and accepted less.

It’s really quite difficult to behave outside of the role we’re in and I see this keeping people stuck in the eating disorder time and time again.

The second part of this is that our environment is set up by and large to support the absolute opposite of eating disorder recovery.

Because although I mentioned above that people can be worried about how others will change their perceptions towards them if they were to recover and gain weight and that by and large we like to say this isn’t true and by and large it isn’t true it doesn’t negate the fact that it also is true. At least it is the messaging we are bombarded with on the daily. That life is easier and people are kinder to you if you are smaller…

You don’t have to look far to have weight loss or being thin as not just preferred but the only way to truly be confident and loved shoved in your face.

Just recently I watched a movie called “I Feel Pretty” starring Amy Schumer. I had to do a quick Google to see when it came out – 2018 which I have to admit is awhile ago now and I’d like to think we’ve come further in peoples physical appearances being so highly scrutinised than this but to be honest I don’t think we have.

This movie depicts a very normal sized – albeit not Hollywood actress thin – woman who has very low self-confidence and is bypassed by men for more thin “attractive” women. Long story short (spoiler alert although it’s not a watch I’d recommend) she hits her head and from then on believes she is pretty.

Because she believes she is pretty she has an entire personality change and is suddenly happy, asking men on dates, entering bikini competitions, walking around confidently wearing cute outfits to work and all round being really friendly to people.

The message is loud and clear.

If you’re thin and pretty you’ll feel great.

Having worked in eating disorder treatment for over seven years and having lived with anorexia nervosa for fifteen years prior to that I can tell you – hand on my heart that this is not the way it goes.

Being “pretty” on the outside does not translate to feeling pretty and being as confident in your pretty-ness as this movie sells you you will be.

It is a boring, outdated and downright dangerous message to continue to send wrapped up in a movie that’s supposed to be a comedy.

It reminded me of watching Bridget Jones’s Diary as a kid and noticing that this again very normal body sized and beautiful woman was ridiculed the entire time for being “fat”. Even as a child I knew that was weird. However, the message still gets through thin = better/more desirable/more loveable and when you’re thin you’ll be more confident in yourself.

My point here is that we can tell people to love themselves all we like but these are the messages and these are the environments the very same people grew up in and will walk right back into after we’re done telling them their worth is not measured by their weight or how they look.

And I haven’t even mentioned influences that are closer to home such as parents doing the latest diet (with good intentions) or friends pulling apart their own bodies or commenting on the bodies of others.

Our world as it is, is not set up for an easy recovery from an eating disorder.

What Can We Do?

So, the question becomes how can we win?…

Amongst all the noise and all the messaging telling us to look better and be better how can we win?

How can we help people recover and ideally not fall sick with eating disorders in the first place?

I’ve said it before and I have no doubt I’ll be saying again.

We win by doing our own work. Truly. This does not mean it is your responsibility to heal others, it means it is your responsibility to heal you. This does not mean it is your fault you’ve been caught up in intermittent pasting, avoiding carbs or whatever the hell else it may be fore you but it does mean that it is your responsibility to change this.

While I watched the “I Feel Pretty” movie trying to sell us that the only way to be truly confident in yourself is to be pretty and the most important part of being pretty means being thin I sat there eating chocolate ice-cream from the container (after finishing a bowl of chocolate brownie and ice-cream). As someone who lived a large chunk of their life with anorexia nervosa the irony nor the profoundness of this was not lost on me.

I can’t help but think as I write this now that this movie would truly have once affected me, even if I’d have pretended it didn’t because I’d have wanted to be stronger than that. And I know it affected others. I know there’ll be people who took the old thin = confidence message without question, I know there’ll be people it made feel uncomfortable and maybe questioned a little more and awesomely I also know there’ll be people who understood it was awful.

We can all become people who don’t buy into this absolute crap.

And the only person you have to worry about not buying into this absolute crap is you.

That’s the most important thing we can do as individuals.

At a more macro level of course these businesses that prey on people’s insecurities are what I’d most love to change but given that diet culture is a multi-billion dollar industry I don’t think that’s dying out any time soon. Yet even despite this you can become someone beyond this. You don’t need to fix the world, you really don’t. That is too big an ask that will just keep you more stuck than useful.

Focus on you.

You will have a larger impact than you can possibly imagine, and I truly believe possibly achieve through trying to convince others to feel positive about their bodies because the truth always shines through.

Possibly the most important learning I made in eating disorder recovery was that I didn’t need to heal anyone else in order to heal myself. In fact, I didn’t need anyone else to do or think anything yet I desperately wanted them to. I wanted others to feel good within themselves and yet the only thing that truly changed in recovery was me.

The paradox of being outside of this and having healed myself is that I now feel no need to fix or change anyone else. This puts me in the position to be able to do  the work I do because I know it is an area that is so misunderstood, I know it is an area where we don’t yet have a gold standard treatment that is super successful, I know that because of this it is an area where people die or stay stuck their entire lives. And I know the people stuck, I know the people dying are incredible people.

I do this work because I know it is an area I can help in.

I know it is not the only area I can help in, and I know it is not the only area that is important and needs help but it is an area I truly understand because I don’t think you can really understand something unless you’ve experienced it.

I do this work because although it is undeniable that I gained a lot through my experience of spending fifteen years of my life living with and recovering from anorexia nervosa if I had the opportunity to redo those years eating disorder free, I would take it every time.

I did not need that experience to become the person I am today.

I do not believe that that level of suffering in my life was necessary. I do believe that at the age I was, the experiences I’d had, the mind and genetics I had made my falling sick inevitable but my going on suffering for fifteen years that was not. That was due to all these factors I’ve discussed above about why recovering from an eating disorder is so hard.  

I hear a lot (and I have to admit I have been guilty of this also) people saying sentiments along the lines of “but everyone’s recovery journey is different”, “what works for one person isn’t for everyone” and so on and while this is true it is also true that this is a bit of a cop out. We say it with good intentions because we don’t want people to try something and it doesn’t work for them and then they feel nothing will work and it’s their fault and they give up but by doing this and by skipping over the real truth and nitty gritty behind our recovery stories I also feel we do people feeling stuck and looking for more solid answers on what to do and on how to recover a massive disservice.

I do think there could be a lot more honestly in how people recover from eating disorders. Hence, why I have a second book in the works (surprise!) that includes the stories of multiple people who have recovered from eating disorders and their answers to very specific questions I think people wanting to recover and people wanting to help loved ones recover are looking for answers to.

Summary

I am one of the lucky ones because I am one of the ones who can say that not only did I survive but I also did recover. I’ve also been lucky enough to experience about nine years of life on the other side of an eating disorder. Which is no longer life on the other side of an eating disorder or a recovered life it is “just” a life. What I mean by this is my life is no longer measured by, controlled by or compared to my life with an eating disorder. It is a totally different life.

I’d love for eating disorder recovery to go beyond some people being lucky and others not (because the stats say less than half of adults with anorexia nervosa or bulimia nervosa recover¹. That’s a hell of a lot to leave up to luck).  

I’d love to see more intentional utilisation of the unconscious mind and not just the conscious mind in treatment, recovery and creating a meaningful life beyond an eating disorder.

I’d like to see us do better because I’d like to see more people live their lives rather than have them stolen and destroyed by an eating disorder (not to mention the lives outside of the person living with is illness that are affected).

We can make headway by addressing the reasons I’ve covered within this blog as to why recovery from an eating disorder is hard and by doing so make it a little less hard:

1. Helping people to understand what eating disorders are and are not so that we know what we are working with and they know what they need to do to change things and recover.
2. Work with the part of our minds that are doing eating disorders – the unconscious mind.
3. We can create environments that are genuinely more accepting of human beings beyond their looks. Easier said than done at the macro level hence all you really have to do here is focus on you. Don’t be one of the ones unintentionally perpetuating diet culture (by putting yourself down in front of others or commenting on food choices etc).

With my whole heart I hope you found this information valuable.