(More) thoughts about ED recovery

A couple of weeks ago, a friend recommended a documentary about anorexia by Louis Theroux and tonight I finally got round to watching it, which got me thinking a lot more about eating disorders in general and particularly about recovery and what it actually means.  I realised that apart from a few specific posts (21/05/07: probably the most significant day of my life.  Reflections a decade on…, the diary entry posts I wrote around that time and ED stereotypes), I haven’t really written many posts directly about eating disorders although they’ve come into a lot of my other posts.  I’m not really sure why; I think it’s partly because I’ve had it so long that it kind of seems like a part of me instead of an actual ‘illness’ but also partly because I’m still not comfortable talking openly about it to many people and it makes me feel really guilty and uncomfortable.  It’s not exactly a secret- more the opposite really and most people who know me just accept it as part of who I am so it’s not really an outside issue a lot of the time especially since my weight’s high.  I think most people would be more shocked if I actually ate ‘real’ food or in front of them rather than it being a problem that I don’t!  But I can’t see that happening anytime soon (or ever) so I have no idea what would actually happen if I did.

The documentary was interesting but I found it hard to watch and cried through a lot of it (although to be honest, I’m crying at pretty much anything atm so that’s not necessarily a reflection on the programme).  The first (and v superficial) part was that it made me realise that I am SO FUCKING FAT which obviously I knew already since I see my body every day and I know what the scales say but seeing that amount of really thin people made it even more obvious and (horribly) I was really, really jealous.  Since I’ve been on medication (particularly antipsychotics), I’ve gained A LOT of weight and even more since I started running longer distances because ironically you train your body to store fat as fuel which combined with the medications means that I’m over my target weight and have been for years apart from a few months last year when I came off the medication and lost most of the weight again, which went straight back on when I restarted the meds.  HATE it so, so much and especially hate feeling selfish, greedy and disgusting all the time and that it shows in my body.  But I can run further and for longer without getting black in front of my eyes or passing out so there are some positives. And much as I hate the medication, it does help to keep my moods more stable so can’t really complain too much.

The other really weird bit of the documentary was that it was based in Phoenix Wing at St Ann’s in London which was where I was outpatient for a year when I lived in London. So that was a bit surreal and weird to watch!  I could relate to a lot of it which felt very weird because I haven’t been inpatient since 2007 but it didn’t seem like much had changed except that they were allowed to go into their ward rounds (we had to submit requests then wait for the outcome), they were allowed home leave before getting to target weight (one year, I wasn’t even allowed home on Christmas even though I’d been there for months by that point) and their supervision was half an hour after meals instead of an hour.  Apart from that, the structure and lack of freedom seemed pretty much the same although he said that the average admission was four months which seemed a bit short to me but maybe the programme was different?

The documentary was based alternately on four different women who had had eating disorders for various amounts of time.  One girl had only had it for a year and her story seemed the most positive- by the end, she said she was determined not to go back in and she seemed to see herself as ‘recovering’ although I’m still not sure what that actually means.  The story I identified with most was with a girl who was on her eighth admission because I could see how frustrated she was with the whole process and going round in circles.  Even though I haven’t been inpatient in 12 years, I’m still on and off under ED services and I genuinely don’t know what recovery actually is or how you get there.  One girl was under a section and the ED service weren’t even aiming for ‘full recovery’ with her although they still didn’t say what that actually is!

The last story was about a woman who’d had anorexia for 40 years and was still an outpatient, and I could relate to a lot of what she said too.  She cut through the psychological stuff and said that it was basically about not wanting to grow up, and there’s a lot of me that can relate to that too.  I’m not really into the deep psychological reasons or any of that, but I know my ED started the year after my periods did and a lot of it as a teenager was related to trying to stop my periods and especially the intense mood swings and obsessions that came with them.  I’ve never experienced sexual attraction but I’m not sure how much of that is related to not wanting to if that makes sense and actively trying to stop sexual development through losing weight and stopping periods- I’ve never had proper regular periods because I’ve always tried to stop them and now I take the combined pill every day without the ‘break’ so I don’t have them at all.  But then it’s more complicated because of autism which is a developmental delay and makes you feel younger than you are anyway and because of BPD which also makes you feel like a child and emotionally immature so I have no idea what comes from what.  The psychiatrist I saw at the ED service recently said that he thought my ED came from having BPD but the other psychiatrist I’m seeing at the community mental health team doesn’t agree so I have no bloody clue and to be honest, I don’t really care what comes from what, I just want rid of it all or at least to be able to manage better!

The thing I found really frustrating about the documentary is that it only focussed on ‘classic’ restrictive anorexia and not other forms such as binge/purge subtype or atypical anorexia which are equally common and dangerous although more complicated and probably make less interesting TV.  I’ve had all of those types of anorexia at various points since I was 13 and ironically the restrictive type was the easiest to manage by far- it’s a lot easier to ‘just not eat’ than it is to balance starving, bingeing, throwing up, exercise and try to seem relatively ‘normal’.  I was actually healthiest when I had restrictive anorexia because I wasn’t doing ridiculous things to my body and metabolism, my weight was low but I didn’t have the energy to over-exercise, I wasn’t throwing up so my electrolytes were relatively OK and the worst physical symptom I had was passing out when I got up too fast.  Annoyingly after a few years, just restricting wasn’t enough to manage the intense emotions and obsessions which kept coming back so other symptoms started and that’s a LOT harder to manage and genuinely does make you feel like a total freak and a failure for not being able to manage it properly.

My current diagnosis is ‘atypical anorexia’ because my weight is high and it’s a lot more about the food and eating/not eating than it is about particular weights.  For me, it’s never been about body image- I hate how I look and I look fat even at my lowest weight, and I don’t use mirrors anyway (even when I was inpatient and had to have one in my room for ‘body image’ work, I hid it in the wardrobe and gave it to another patient who actually wanted one).  I want to be a lower weight because I know that under a certain weight, the intensity of my obsessions gets less and because it’s easier to rationalise being selfish, greedy and lazy when you know you’re at a low weight because you logically CAN’T be even though your brain still tries to tell you that you are.  Plus being a higher weight and still having ED issues makes you feel like a massive failure in so many different ways!

I still find it hard to eat anything that isn’t ‘safe’ (ie porridge, low fat soup or salad) and can’t eat in front of people but I really, really want to change that.  I hate that every Christmas, I can’t eat Christmas dinner at the same time as the rest of my family even if it is different food or that I have to make excuses at school for never eating anything.  Even if I was interested in anyone, I’d never be able to go on a date with them because I wouldn’t be able to eat in front of them.  I also still have the constant ED ‘voice’ all the time and I can’t imagine ever not having it- it’s scary to think of because even though I hate feeling rubbish and guilty all the time, it does help to keep me ‘safe’ and less selfish than I would be without it. The other problem is that I have a lot of guilt and anxiety all the time anyway (physically- it’s in my chest and stomach all the time) and that gets a lot worse when I eat pretty much anything which makes it really hard to even think about changing or varying what I eat. But there’s a part of me that really, really does want to :/ one of the things the documentary mentioned that is absolutely true is how much of a paradox anorexia is- there really is two parts of your brain that are constantly arguing and it’s EXHAUSTING.

I still don’t really know what recovery from an eating disorder ‘is’, and the documentary didn’t really help with that.  When I was an inpatient, the focus was on getting to target weight and learning to stabilise there but that isn’t the answer for everyone or even for most people I think.  I’m at target weight and have been mostly for years, but the ED part of me is stronger now than it was when I was a lower weight (because then you feel safer and ironically can eat a bit more), and it seems to be getting worse as I get older.  It’s also hard because in a lot of ways, I don’t really feel like an adult and one of the doctors in the documentary talked about that- she said that if you’ve had an ED for a long time, you’re following its rules all the time and you miss out on ‘normal’ development in the ‘real world’ and I can really relate to that.  I’ve never done the ‘normal’ teenage or young adult stuff like going out and drinking (I always say I just didn’t want to drink- the real reason is that alcohol has too many empty calories), eating with friends or even socialising much because so much of my life is structured around mealtimes.  Even now, I can only meet people at specific times because if I miss a mealtime, I can’t eat for the rest of the day.  Plus when you’re with people, at least 75% of your brain is taken up already with ED thoughts or obsessions and that’s hard for other people to deal with I think even though obviously they can’t see into your brain.

I think for me, recovery would be feeling ‘safer’ and more comfortable both with my body and around eating food in general.  I really do want to have a more varied diet but it would have to come from someone other than me- I’ve tried so many times before but the guilt and anxiety are way too intense, and I kind of need someone to just tell me what to eat so it’s not my choice and to have consequences if I don’t stick to it.  But ED services don’t work like that any more :/ I did ask when I had the assessment the other week but he said that they want to promote choice and independence which is fine when you haven’t had an ED that long but if you’ve had it 19 years, choice is bloody terrifying!!  I really do want to ‘recover’ (whatever that means) but it’s so bloody hard and I’ve been trying on my own for years.  Feel like I’m just going in circles and that makes you feel more trapped which then makes the ED voice stronger and safer :/ really want to break the cycle somehow but I have no idea how.

It really was an interesting documentary and worth watching if you’re interested but be aware if you have or have had an ED- it does focus on low weight anorexia and can be a bit triggering, so please be careful!!  I’m glad I watched it though; it really did make me feel even more determined never to be an inpatient again and it was kind of a relief to realise that there are other people who also have long term EDs so I’m not *too* much of a failure.  Am also even more determined now to find out what recovery from chronic ED actually ‘is’ and how to get there…