EDAW 2018: One foot still in my eating disorder

It’s Eating Disorder Awareness Week and usually I would at least intend to do something, but this year I have not. I came out of hospital last week, and while I had one article planned for someone else, nothing has materialised.

But… it’s not just that. I think I have got to a point where it feels, at least for me, like something I need to distance myself from to an extent. Or perhaps, more to the point, because of the stage I am at in ‘recovery’ from my eating disorder, it feels like I am less entitled to a voice – I look ‘well’, physically I am pretty well, and I am not where I used to be. I am nowhere near where I used to be.

And yet… I am so far from where I want to be. And I think this part, where I am, needs speaking about more. One of my previous posts for EDAW is a post I think summarises a lot of the general stuff I want to say, year in, year out. Raising awareness feels like it needs to change; what we are saying needs to change, and raising awareness is only so good. I mean, most people are aware of eating disorders. The understanding of eating disorders on the other hand, is not always so great.

I look back at when I was diagnosed with Anorexia Nervosa, and the subsequent years upon years of treatment. I received support from CAMHS, and then adult services. Inpatient for eating disorders, inpatient on medical wards, outpatient and day patient. I look back and there are so many things I remember, but more to the point, so many blank gaps; I hear stories of what I was like from my family, of things that happened, and it is like it was not me.

Today I was sat with my my community worker, and we were discussing my eating and exercise. I had a horrible moment where this wave came over me, and all I said was… “I was so unhappy”. And then I said that the word ‘unhappy’ was a poor word to explain how I felt.

It is hard to believe that I was once very underweight. That people approached my Mum in the street concerned about me. That I had to go into hospital on bed rest, be pushed around in a wheelchair, and even when I relapsed, re-entered ‘recovery’ remaining as an outpatient/day patient, I had to go briefly onto a medical ward because it was too dangerous to start eating at home; because of the worries of refeeding syndrome, and how my body would react to food. When people are worried that you starting to eat again could be dangerous, it sounds like the most ridiculous thing ever; that if you are going to start eating more again, you need to go into hospital so they can constantly monitor your bloods, your vitals and your weight.

The biggest thing that always comes back to me was the last time I entered ‘recovery’ from a bad relapse. I had no intention of agreeing to go into hospital for medical stabilisation. I had no intention of getting ‘better’. I definitely had no desire to gain weight. But I went to an appointment, and by the time I got there I was crying my eyes out in the waiting room because I physically could not handle even walking. I saw myself, week on week, find the journey to my appointment harder and harder. I watched my body get weaker until I struggled to make it at all. I was not sure I was going to make it the following week.

I agreed to the admission. Not because I wanted to get better. Not because I wanted to gain weight. I was not even really thinking. All I knew was, I could not carry on.

I went home and in two days leading up to being admitted, I crawled up the stairs to get to bed because I could not walk. And I sat in front of my psychiatrist and I realised… if she told me she was crawling to bed because her body was so weak from starvation that she could not walk, that if someone the same age as me (19), said that… I would be terrified for them. I would feel sorry for them. I would feel… just shocked that someone could be in that state.

And I remember on the ward, in the bathroom getting changed, after avoiding mirrors for months, I saw my full body naked… and I cried. I saw what everyone else was seeing. I saw why my Mum refused to hug me. I saw that there was barely any ‘me’ left – and while I mean that physically, really, I mean it in every sense possible.

So yes, I was a typical patient with anorexia. I was. I was underweight, anaemic, low blood pressure, osteoporosis, refusing to eat, crying over food, crying at being weighed. I was dizzy and weak, my hair was falling out by the bucket, and I had reached the point where I did not want to be alive. Each day was painful to survive, mentally and physically. I felt like I was dying, and really, I was.

But… it does not end there. It has not ended.

Last week I injured myself. I manage being a “healthy” weight by exercising. I force myself to maintain a little below the weight range the eating disorder service I am no longer under, set me. I do not need specialist treatment any more. But god forbid I go over that weight range. God forbid I get an injury and cannot exercise…

Oh. That happened.

And in that happening, it has been a stark reminder over the last few days, of the fact that you can seem ‘recovered’ and ‘better’, but you can still have one foot in your eating disorder.

What does ‘one foot in an eating disorder’ look like? It’s:

  • Maintaining the minimal healthy weight for your age/height, and not accepting that your body might be happier at a slightly higher weight. That a BMI of 18.5-20 does not necessarily = recovered, and that gaining a little more might psychologically do the world of good, as well as physically
  • Micro-managing your eating and exercise to make sure that your weight does not go up (and hoping, deep down, that it will go down)
  • Exercising when you do not want to exercise, it is convincing yourself you do. It is stopping doing weights, because you know cardio will burn more calories, and it is exercising when you have an injury because you are terrified of not burning calories.
  • Judging yourself based on your weight, being critical of certain parts of your body, and letting that control your life to the extent that it is destroying your life.
  • Still not allowing yourself to eat a long list of foods, and punishing yourself if you do. Following routines and rituals around food. Not being able to manage if you cannot eat in your regular routine, or alone, or at home.
  • And it is being incredibly isolated with it; because you are ‘recovered’ in the sense you do not require a referral to eating disorder services. You are physically pretty healthy, and no doctor is going to be worrying over you. You know your weight is healthy ‘enough’, and because of this you do not dare consider that you need to let your weight go up a bit more. You do not dare have a conversation about it, because you think you will be judged… that people will just be thinking “but look at her, she is fine.’

And this is dangerous, because it makes the risk of relapse high.

Personally, I feel confident that I will never go back to where I was. I am very structured with my eating, and I feel dependent on that structure. If I did not have my set meals at set times, not only would my eating disorder become problematic again, but I think it would impact on my other mental health problems. I am very rigid about my eating, and I would not easily be able to break out of the patterns I have; which is good, in that it keeps me eating, but there is a long way to go to feel ‘free’.

I have not yet let go. I fear that to ‘let go’ would mean to be at a weight higher than many people who recover from eating disorders would ever consider. I fear that to ‘let go’ would to be at a weight I could not manage. More than anything, I guess I fear to ‘let go’ because I have clung onto my eating disorder for so long; it’s a monster. It is scary. It controls my life; but it also feels familiar, and safe.

But like the saying goes…

“The day came when the risk to remain tight in a bud was more painful than the risk it took to blossom.”

And I have run around the idea of letting go of societal standards, and eating disorder services goal weight ranges… and just…letting go. If being a higher BMI means I am happier and healthier, and free…I will do it. And I know I have said this before, but I know that there is every chance that right now is the time that I really will make those next steps to… to a life where my eating disorder has less control than it does now.

I am not a fan of the word ‘recovery’, so I do not want to say I am trying to move onto a full recovery. I am trying to be free, and happy, and accept myself as I am. I am not after full recovery and loving every inch of myself… just freedom, just to feel carefree…to go out with friends and eat a slice of cake if I want to, to not micro manage my weight like it is a full-time job… really, I just want to truly live.

It is Eating Disorder Awareness Week, and I guess this post is for the people who have overcome what many would see as the “worst”, but who actually, are still fighting a horrible, daily internal battle. This is me telling you that your body weight might be at a weight that medically is “healthy”, but that does not mean that your journey has ended; it does not mean you do not have behaviours that you still need to work on, or pounds that is is absolutely ok for you to gain.

This post is me telling you that if you are in this place, you are not alone, even though not as many people talk about this part as they do when you are acutely unwell or in early recovery. And I am here waving my own little banner for you, cheering you on, to do whatever it is you need to do next, albeit exercising less, heck quitting exercise… or challenging what you eat, gaining more weight than a professional once told you that you need to (because ya know, we are not robots; you cannot take 20 people of the same height and gender and expect them all to be the same weight). Whatever it is you need to do, I am here for you, and quietly encouraging you, as I encourage myself.

There is, in the end, the letting go.

 

 

 

 

 

 

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