Even more thoughts about ED recovery!

[Obvious trigger warning: this post is about eating disorders and has a lot of honesty that might be triggering for people experiencing EDs, even if you are recovered.]

I was talking to a friend a few days ago and she said that I was doing really well with eating regularly and being a healthy weight, which I know is a positive. But she also said that I don’t have an eating disorder any more which for some reason really upset me and I wasn’t really sure why- I know it’s a good thing, I don’t want to be seen as having an eating disorder or be defined by it, I want to be healthy and I REALLY want to have a baby but it still made me feel really weird and upset. Which got me thinking even more about what eating disorder recovery actually is and what it means. I’ve written some posts about this before (Thoughts about ED recovery and (More) thoughts about ED recovery) but I’m realising more and more about it the further into recovery I get.

I know that recovering from an eating disorder is much more than just gaining weight and eating three meals a day- if that’s all it was, I’d have recovered every time I was an inpatient! But I’m still not totally sure what it actually means. I still have a very strong ED ‘voice’ in my head all the time, I get anxious every time I eat or am near food that’s high in calories (which is a challenge since I’m currently working in a pub!) and I eat the same foods every day but I don’t act on the ED thoughts or urges- I don’t skip meals (unless I’m in a situation where it’s physically impossible such as in the middle of a shift at work), I don’t binge or purge any more, I eat even when I feel so anxious my stomach is churning and I feel physically sick, I’m even drinking bloody Fortijuce because I need a certain amount of calories to absorb one of the medications I take. So on a surface level, maybe I am ‘recovered’. But that thought genuinely terrifies me and it’s taken a lot of thinking, honesty and admitting things I’d rather not to work out why. Which is what this blog post is about, and PLEASE don’t judge me!!

I know it’s not possible to recover from an eating disorder and still have one- the two are mutually exclusive. But it IS possible to both want to recover and still (secretly) want to have an eating disorder and I think it’s a lot more common than most people realise. I want recovery- really. I want to be ‘normal’, I want children, I want to be able to eat naturally and in front of people, not feel anxious around food, not think about food every bloody minute, be able to eat out or at friend’s houses, even have a normal Christmas dinner. But the idea of not having an eating disorder honestly is so scary and I think it’s even more scary than the idea of living with one for the rest of my life. I’ve been thinking about it a lot over the last couple of days and I think there are a few main reasons which I’ll go into more detail about- the fact that I’ve had an ED for 20 years which is nearly two thirds of my life so the idea of change is really scary; the idea that the ED keeps me ‘safe’, less selfish, greedy or lazy; feeling ‘in control’, less chaotic and being able to manage emotions better; and the hardest one to admit- losing an ‘identity’ or something that is actually a big part of who you are.

The first and most obvious reason is that I’ve had an ED for most of my life and I can’t actually remember a time when I DIDN’T have a critical voice in my head telling me that I was fat, selfish, greedy or lazy and commenting on what I ate. Even before the idea of an eating disorder was first mentioned by a doctor when I was 13, I knew I was fat and that was why I was selfish, didn’t have any friends and messed things up all the time. The first time I remember consciously thinking that was when I was in Year 3 and tried to hold my stomach in for school photos, in Year 4 we had to weigh ourselves in a maths lesson to plot on a graph and I lied about my weight because I thought it was too high, in Year 5 I was embarrassed about having boobs and needing a crop top so I refused to wear one even though my chest hurt and rubbed against my school shirt, in Year 6 I made my mum buy an age 9-10 top for the leavers’ disco even though it stretched over my chest because I didn’t want to get age 11-12 when I wasn’t 12. I can’t remember ever eating food without feeling guilty about it although I must have when I was really little, and the idea of being able to eat without feeling anxious or guilty is weird and scary and doesn’t even really seem possible. And I’m scared of change which is another factor that makes the idea of recovery even more scary- the thought of change makes me feel shaky and like my stomach has dropped out, even though I know that you need to change to grow and move on. I think autism doesn’t help with this- with ASD, you get ‘stuck’ in patterns and behaviours that feel safe and make the world less chaotic, and it feels impossible to change. But I also know that is IS possible to change and that the world doesn’t end or even feel that different if you break it down and do it step by step. It’s not true that making the first step that is the hardest; they’re all equally hard but really, really worth it.

One of the biggest fears I have about ‘recovering’ from ED is the idea that without it, I’m fat, selfish, greedy and lazy and it’s the eating disorder that stops this from taking over. And it’s hard because it genuinely does- if I’m not eating much food, I can’t be greedy; if I’m exercising every day, I can’t be lazy; if my weight is low, I can’t be fat. But having an eating disorder DOES NOT make you any less selfish and actually makes it worse- you focus totally on yourself and what you are/aren’t eating, when you’re a low weight people worry about you which is incredibly selfish, and it’s hard to focus on other people when you’re constantly worrying about food or feeling guilty. But it’s also hard to fully believe that when you’ve got a ‘voice’ in your head telling you the opposite, the only way to stop being selfish is to lose weight and take up less space (physically and emotionally), the reason you’re lazy and greedy is because you’re fat and losing weight will make everything better… SO BLOODY HARD to work out what is real!!

The next reason, which links to the last one, is that the ED helps you to feel more in control and manage emotions better. This is hard to argue against because in a lot of ways, it does- restricting food and/or losing weight really does ‘blunt’ or even get rid of extreme emotions (at least until your body adapts and it doesn’t work any more), and for years this stopped me from wanting to even try to recover from ED. But after about 15 years of food restriction, it didn’t seem to work any more and I was experiencing extreme emotions, mood changes and obsessions at the same intensity even when I lost a lot of weight or severely restricted food intake again. But there’s still the voice in my head telling me that next time it will work, I just didn’t lose enough weight, I can get back in control of my emotions and especially obsessions without needing multiple drugs and that all I need to do is lose more weight. It’s so hard to fight against all the time and it’s exhausting. And I want it to be true so, so badly!! But rationally I know it’s not- I have BPD and the only way to actually (and consistently) manage and control extreme emotions and obsessions is to find the right balance of medication and be able to access psychological support and especially dialectical behaviour therapy which you can’t do if you’re not eating consistently.

The last reason is both the hardest to admit and the most complicated to explain- that not having an eating disorder is like losing a big part of your identity. I’ve had an ED for 20 years which is nearly two thirds of my life, and it’s unfortunately a big part of who I am which I’m really, really scared to lose. I’m not saying that I like having an eating disorder or that I want it- I don’t, and I genuinely hate the shitty part of my brain that tells me constantly how fat, lazy, greedy and selfish I am for even thinking about recovery but I am scared to ‘not’ have it if that makes sense. Which I’m sure it doesn’t so will try to explain! When I was first diagnosed with an eating disorder, I was really, really ashamed of it and didn’t want anyone to know. When I was in hospital, I only told one friend where I was and told my parents not to tell anyone although I’m guessing quite a few people knew by then and especially as I was in hospital over the next two years. I don’t like people associating me with having an eating disorder and outwardly, I really DON’T want it to be part of my identity.

But inwardly, it really, really is and I’m scared of losing that. I don’t think the voice will ever go away but I don’t listen to it as much any more and I definitely don’t act on it so I suppose outwardly, it does seem like I’m ‘recovered’. But does that mean I have to eat like everyone else? Do I need to eat fat? Do I have to eat different foods every day, eat ‘impulsively’, not stick to a meal plan and timings, have snacks and actually WANT to eat? Because all of those things terrify me, more than losing so much weight I need to go into hospital again or making my already rubbish bone density, teeth or heart rate worse. I don’t want to be ‘ill’ or be seen as having an eating disorder but at the same time, I’m scared of not having one because it means confronting all of the fears that have been a part of me for so long and changing so much of what makes me ‘safe’. But I want to be able to have a baby, be a ‘normal’ adult, experience sexual attraction and actually have an identity that is ‘me’ and not eating disordered or ‘ill’. And I know you can’t really have both, and that’s what I’m scared and confused about. And maybe this is all part of ‘recovery’, which I’m still not really sure what it actually is!

I know this blog post might read a bit negative and I honestly don’t want it to. I’m just a bit conflicted about the whole concept of recovery at the moment- lockdown threw everything into a bit of confusion and although I ‘saw’ a really, really helpful psychologist over lockdown who helped me get back into a regular meal plan and different foods each meal, I’m still feeling a bit overwhelmed by all of it especially as I’m taking a new medication which requires a minimum amount of calories to be absorbed! But I think the fact that I’m still trying SO BLOODY HARD and I really, really want to work it out and ‘get better’ means that I probably do want recovery, once I figure out what it actually is… Just so confusing and hard to get your head around!

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