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Things I Wish I Had Known When I First Developed Anorexia….

When I first became ill with anorexia nervosa, I was a 27 year old woman who had never had any form of disordered eating, history of dieting or weight manipulation and I was at a stage in my life where I felt happy and settled.  Therefore finding myself with a severe eating disorder was a completely bewildering situation for me and my family.

I had never knowingly known someone with anorexia and knew very little about the illness, other than the stereotype and that was not me.  All my life I had loved food, I had never had a significant desire to be ‘skinny’ or aspirations to look like Victoria Beckham and I was a grown woman, not a teenager.

There was no history of trauma in my past, I did not feel my life was ‘out of control’ and I could not ascertain any deep psychological reason for why, I of all people, would suddenly develop this powerful mental illness.

And as I knew so little about the illness and the internet back then was not what it is now, so the amount of information available was much more limited, I was dependent on medical support and only had health professionals and ‘specialists’ to trust for the reasons as to why I had developed this illness and what I should do to get better.

I should also note that at that time, some of the research about what we now know causes eating disorders had not yet been carried out or published…

So, there I was, 27 year old me, very ill, very confused, very hungry and very disordered in my thoughts about food and exercise… but most of all very frightened and seeking the advice I wanted to get better.

Of course at that early stage of the illness, although I had become very disordered quite quickly which resulted in significant sudden weight loss, the eating disorder neural wiring had not yet had time to become significantly established.  Yes, I was very sick at that point but I do wonder now, if I had had the right advice back then and the right support, would I have stayed sick this long?

Well, that is something I can never know but that is also why I’m now passionate about getting the right information of what eating disorder recovery takes out into the world.

I wanted to write this post about what I wish I had known at that early stage of having anorexia because maybe things could have been different for me and if someone reads this in their own bewildering early days or first couple of years of illness, perhaps they can learn from the things it has taken me 13 years to understand and get better faster.

Here then are some of the things I wish I had known at the start, when anorexia was first diagnosed:

  • Anyone can recover from an eating disorder, no matter what, but strike it hard and fast at the start, before the illness is hard wired in the brain and the chances of a good and full recovery in no time is going to be so much greater.

 

  • Eating disorder recovery takes a lot of food – what, when, where and how you want.  And in eating disorder recovery there are no rights or wrongs as to what you eat… I believe that recovery means getting back to who we were before the illness, so eating foods we loved then is probably a good indicator of what we would truly want.  When I was first ill and initially referred to an eating disorder specialist, I was immediately given a ‘meal plan’ to get me to eat more.  This involved cereal for breakfast and drinking a lot of milk.  Suddenly I found myself buying cereal and bottles of milk, believing this was my way of getting my old self back.  Yet that old self had not eaten cereal since she was about 6 years old and had always hated drinking milk…. I was though scared to eat what I might have really wanted because the meal plan was my ‘prescription’ so it had to be the only way, right?

 

  • As long as we are out of medical dangers of refeeding syndrome, there is not such a thing as ‘too much food’ in restrictive eating disorder recovery.  When I was first handed that initial recovery meal plan, my very starved brain and body just wanted permission to eat what they were crying out for.  But I was given a meal plan that was terrifyingly restrictive and warned against eating more than was on the plan.  What is this madness, were my first thoughts… why can’t I eat more than this?  But then, I trusted those health professionals and believed that they knew better, so my milky and cereal based meal plan must be the best way for me to get my old self back – but only eating the quantities, as well as types of food on the plan, even if I was hungry for more.  This only served to reinforce my disordered fears that one could eat too much and that any signals my body were sending me were wrong and I am still now having to unlearn this damaging advice.

 

  • Eating disorder recovery is not weight restoration alone to a ‘target weight’ and the rate of weight gain cannot be ‘too fast’.  My first time in treatment as an inpatient, I was given a ‘target weight’ at which I was led to believe I would be ‘recovered’ and to reach this target weight I must gain x kg a week – but not more than this amount (as that would of course be bad and punished by having food removed from my meal plan).  The target weight I set was as ridiculous as being down to a 0.99 of a kg!!  The target weight was also undoubtedly much lower than my set point weight had been as a healthy adult prior to developing anorexia, yet I was advised that once I hit this low target, my meal plan would be adjusted to ensure I maintained this weight and did not, heaven forbid, keep gaining.

 

  • When it comes to weight restoration post starvation, throughout my early years with the illness, nobody explained the overshoot phenomena to me either, why it happens and why it is important to allow it to happen if we want to fully heal.  This is despite the fact that overshoot is not a concept about which there was little knowledge before – overshoot was a key finding in the Minnesota Starvation Study back in the 1940’s.  However, sadly and perhaps due to fat phobia in our health professionals, this aspect of the study findings and what might happen in eating disorder recovery, is neglected and rarely acknowledged in practice today.

 

  • Ultimately, recovery is about mental STATE NOT WEIGHT.. to recover from an eating disorder, there is no need to focus on weight in terms of numbers at all, because recovery is about addressing the behaviours and restrictions and taking the focus off the numbers, while allowing and trusting the body to do what it needs to do to heal and repair.  I wish someone had told me that – that eating disorder recovery means addressing the mental state – rewiring the brain to stop restricting our food, to stop the behaviours, to find new ways of dealing with stress and anxiety and to keep going with unrestricted eating and resting so that our mental state fully has a chance to completely rewire and recover.  Weight changes are a side effect, NOT a marker of full recovery.

 

  • The whack a mole game in eating disorder recovery is dangerous and real, particularly when it comes to movement and exercise.  If only someone had warned me against trying to address one form of compulsive exercise with another and let me understand that actually it is ok to stop it all (which I was desperate to do, although I would not admit that!).  I have struggled with compulsive exercise and movement throughout this eating disorder and that was never truly addressed at anytime in treatment…  Instead I was encouraged to replace one form of exercise with another but this just meant that the new form of exercise (yes, even yoga) also quickly became just as compulsive and mentally damaging.  In recovery, I wish someone had told me and reassured me at the start that it was ok to abstain from all forms of exercise for a good 1-2 years, allow full recovery and brain rewiring and then see if when fully healthy, you actually want to exercise again and do so in a slow and careful way if you do.  Exercise compulsions in eating disorders have been shown to be one of the most difficult areas to treat from research and people with this side to the illness have the most acute depression and anxiety symptoms.  But is this any wonder when we are not being given treatment that could actually treat us?

 

  • The current research about what causes eating disorders was perhaps not available when I first became ill… that eating disorders are now known to occur in people with a genetic predisposition which is triggered when they get their body into some form of prolonged negative energy (i.e. provide it with less fuel than it is using).  I wish though I had known this at the time I got sick.  When I look back now, this explanation for what causes an eating disorder makes sense.  I became ill after I decided to just try to ‘tone up’ and get a bit fitter and for the first time in my life, I joined a gym.  Slowly this became compulsive and I then lost a bit of weight, got compliments and the usual story unfolded…. Before I knew it, I had obviously gone into enough of an energy deficit for the genes I did not know I carried to be triggered and force me into a full blown eating disorder.  Unlike perhaps many young women, before the age of 26/27 years, I had never tried to diet or exercise to manipulate my body weight before and so this I attribute to why I never developed anorexia at the typical teenage stage.  But knowing why I developed the eating disorder at that point in my life – the biological and genetic principles behind it, when I was first ill would have saved me and my family so much confusion and anguish.

 

  • Following on from the point above, I wish I had never been told that my eating disorder developed from a sense of loss of control in my life, was the fault of my personal circumstances, was caused by certain people in my life or that there was some form of trauma in my past that I had forgotten all about.  Deep down I knew all this was not true.  I knew that I was stable and happy and loved and I knew I did not have any deeply buried trauma, but when health professionals raise these questions in you and make you believe that there has to be something like this lurking in your life or else you would not have such a hideous illness, you believe them.  My God, now I wish I had walked out of any appointments with ‘professionals’ who ever let me question the things I valued most in my life back then.

 

  • Recovery, full recovery, is painful and hard and takes more mental strength and will power and difficult emotions to get through than anyone can ever know.  But it is possible if we put in the work….  I wish someone at the start had told me that if I put my life on hold then and there, put all my energy and efforts into recovery and let the people around me, who cared about me and wanted to help, learn how to help me, that that would give me the very best chance of a full recovery, but that it would also take time.  No one really explained how long recovery would take and as I said before, no one told me what recovery should really involve and most of all, no one helped my family understand how to support me or what was happening and why.

 

  • I wish I had known that if the illness was not addressed right back then, each year the illness would get stronger and take more from my life in every sense.  If I had known at the start that by not achieving full recovery as fast as I could, I would lose my entire thirties to anorexia, maybe things would have been different.  Or maybe not, that I cannot know.

 

  • And I wish I had understood the full impact of starvation on a person mentally and physically and that the personality changes that I experienced were not my having become a hard-core bitch but down to hunger, starvation and a brain that was so bloody desperate for food, little things, like being more tolerant of others or having the same sense of humour or outside interests were not really on the survival radar!

 

Overall, there is a lot I have learnt over the past 13 years of having an eating disorder -about the illness, about how to and not to treat it and about myself.

I am now finding my own messy path to recovery but looking back, yes, I would have done things very differently if I had my time again but I cannot know if the outcome would have been different to how life has unfolded in my case.

I write this though, not for pity but in case it helps anyone else understand the things I did not know for a long time, or perhaps prevents someone else making the mistakes I did.

At the end of the day, just know that eating disorder recovery is possible for anyone but is not easy.  But don’t delay it – put your life on hold and make recovery a priority, whether you have been ill a year or 40 years… it matters.

 

*** And if you have had similar experiences with eating disorder treatment anywhere in the world, please sign the petition to campaign for changes to eating disorder treatment.***

10 replies on “Things I Wish I Had Known When I First Developed Anorexia….”

Brilliant, thoughtful post as usual. First came across you on instagram but have decided it’s not a healthy place for me. I’m so grateful for your blog. Thank you – Keep going.

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I totally understand the need to separate from Instagram- it has pros and definitely cons. We each have to do whatever it takes to make recovery for ourselves as uncomplicated as it can be and sounds like you are doing that xx

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A really interesting post which gave me a lot to think about. Having been ill as a teenager and having almost dug myself out of the hole I did know most of the stuff before I became sick the second time. I say before as I was too out of it and not thinking rationally to have listened to anyone telling me anything to be honest second time round. My rational scientific brain was gone and nothing seemed relevant. And that I think is the problem: a brain in the deepest parts of an ED can’t think straight or concentrate so it is easy to look back and think ‘what if’ when we can think better. At my sickest I don’t think any piece of logical information would have made a difference. But then for me the only thing that could is what has: dealing with trauma. I honestly don’t know how to get through to someone at their sickest. I have a friend who is super bright, has read everything and knows it all but can’t even make the smallest step in recovery. Knowledge isn’t always power, it is a very complex and fundamentally illogical illness. And the genetics are complicated and poorly understood so it is impossible at the moment to test for it and this may always be the case when multiple genes are involved. I am so unsure about what difference having a genetic component would make. Having bipolar, which has a better understood genetic component, I can say that this knowledge doesn’t make any difference to living with it. It’s shit either way. What could make a difference is a real conundrum to me.

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Thanks Sheila for your thoughts and insight. I agree that it’s not as simple as ‘if only…’ and definitely I can relate to the knowing the information but not being able to act on it, and the impact a severely malnourished brain has on our ability to understand and take in information we are given. But the point I had hoped to make was that I was not given the information that might have helped in the first instance and neither were my family who did not have starved brains and so could process things if they had been involved in a meaningful way. Yes, the genetics are still to be fully understood and are complex but to me, the genetic predisposition and links to how anorexia was triggered in my case do make sense.
I’m not trying to say if I’d known everything from day one that I’d have recovered early on. But there’s also an argument for catching the illness early and treating appropriately then, before the disordered neural networks are as ingrained as they are after we are ill for several years.
Sorry if my post was not clear in the points I was trying to make… of course this illness is far from simple but there is a need for better and more appropriate information to people, even if they can’t yet process it.
X

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I couldn’t agree more that getting the information about anorexia out is so important. I think the earlier that people get the right knowledge the better chance they have of recovering quicker. It has to be better earlier on when the neural pathways are less engrained. X

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This is amazing, and YOU are amazing! I just found your page and am so grateful for that- we seem to have a lot in common, and I’m excited to continue following your journey! Sending you so much love and light. (:

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