This month I’m not pregnant. Just like the month before, and the month before and before and before. I’m pretty fed up of it. I can rationalise my situation and know it could be worse, I have gotten pregnant (just haven’t stayed pregnant) and I know it’s only been a couple of years, whereas people go through this for much longer. But it is really really tough and it is taking up such a large space in my head and my heart that it is overwhelming at times. This longing for something I so desperately want, something I thought I was going to have but then didn’t. It’s making me a bitter, mean person too. Pregnancy announcements make me so sad, I want to be happy for others but it’s so sad seeing them get something I want for myself. And effort does not equal reward in this situation which just sucks. I’m fed up of people telling me to ‘just relax’ or ‘stop trying and it will happen’ (fun fact – if you don’t ‘try’ by having sex it won’t actually happen). I’m fed up of people telling me about so and so who got pregnant in their mid forties – I don’t want to have to wait that long and my ovarian reserve is already lower than ideal. I’m fed up of people telling me to be positive when really I just want to be able to feel a bit sorry for myself and manage feeing the feelings. I’m just fed up in general, and I needed a bit of a moan. Better out than in as they say!
Magical moments of recovery
I’ve had a tough day fertility-wise. I had a fleeting thought earlier that I could buy something on the way home and purge it. Not a binge necessarily but just to get the relief feeling I get (or more accurately, think I get) from purging. Soon after I must have gotten distracted by work and it’s only now, long after I’ve eaten my dinner and had a cup of tea and some chocolate that I remembered I was thinking about purging earlier. Instead I came home, ate dinner, talked to a friend, got into bed for an early night with a good book. I forgot about that fleeting ED thought and it is still miraculous to me that that can happen. But it can, because I eat enough and my body is at its healthy weight and I am no longer hungry and obsessed. And wow it feels good. It doesn’t always feel good being in this body, but in these magical moments when I am happily tucked up in bed satisfied instead of cleaning away signs of shame in the bathroom and wondering when it will ever stop, it feels really good. Just keep on keeping on through recovery, it is worth it.
Feeling all the feelings
A large part of my recovery was learning to sit with negative feelings and not try to starve, binge, purge or cut them away. It took a whole lot of practice and trust and failure and more practice to learn to do it, but I did get there. Not perfectly of course, my default to something going wrong is still to want to lose weight or do something harmful to stop feeling bad, but I can manage it. I make better choices. I can have a cry and get on with things. I can get myself out for a walk or a swim. I can phone a friend. Admittedly a lot of the time I just hide in bed and nap it out, but that’s still better than past me.
The problem is with ‘sitting with the feelings’ is that you actually have to feel them. In everyday life, when things are going pretty well, I can do this. I also had the protection of medication, which was definitely a buffer of the bad feelings for me. Last year though I came off my medication, with the help of my doctor, as my partner (yeah, there’s a partner now!) wanted to try for a baby. At first I was really okay. My GP was dubious of my choice of timing, what with a global pandemic going on and all, but I did okay. I made sure I did all the other stuff I know helped, I exercised (in moderation), I talked with friends, I even downloaded a mediation app (still not used, just have never got on board with meditation, but I had all the good intentions!). And I got pregnant. And suddenly the body I felt had always disappointed me was doing this wonderful thing.
Until it wasn’t. We lost the pregnancy, despite months of severe nausea and vomiting and everyone telling me that was ‘a good sign’. There were a lot of feelings to have to feel. Honestly, I tried purging them away at first. I figured I’d been throwing up for months anyway what harm was there in keeping going. I eventually figured out that wasn’t going to help and I got back on track and threw everything I had at keeping myself well enough physically and mentally so I could be ready for another pregnancy.
So we tried again, and tried some more, and then some more. And there were more feelings to feel. More hate for this stupid body that won’t ever just be what I want it to be. Rationally I knew other people try far longer than we were, but as the months rolled by and my original due date passed the feelings grew and grew and sitting with them felt impossible. I realised that while I had recovered from my eating disorder, I hadn’t yet really learnt to manage this bit. What do you do with all the feelings when you can’t hide them with your ED? I felt that I had fallen for this great trick of ‘get better and you’ll feel great’ without anyone showing me how to live when I don’t feel great, and now I’m also in this version of a body that right now I’m hating like I’ve never hated it before.
I don’t have the answer for this. I got pregnant again, and basically hoped that would be my answer. Until it wasn’t. We lost the pregnancy. There are more feelings to feel. I am trying my hardest to be optimistic, and I genuinely do believe it will happen for us, and I know I just need to be patient. But the feelings are hard. And no matter what I do they keep bubbling up. Because I guess that’s the thing about feelings, their job is to be felt. So I can hide from them all I like, but there they are.
So now, I’m just here, feeling the feelings, and still learning how to do that. And hoping that if I ever do figure it out, maybe I’ll be able to teach my children about it one day.
Now
Well, it’s been a long time since I’ve been here. Every time I think about writing, I think about how I would have to explain the last 18 months, so I don’t write. So instead today I’m just going to start with now.
Today was a bad day. Not surprising that it’s a bad day to bring me back to my safe space here I guess. I took out a coat I haven’t worn in a couple of years to wear and it didn’t fit. That’s happened a lot over the last year particularly, but this one threw me more than the others. It wasn’t a small size, it was always a ‘bigger coat’ but my upper arm was just stuck and squished in it. I have a long, complicated, destructive relationship with my arms (basically, I hate them, but no matter what I did they would never change) and this felt like the straw to break the camel’s back on top of a few rough things going on right now. I tried on another coat – fit but with a squeeze. I really just didn’t want to be dealing with the fat issue today.
Sensible rational me knows that I just need to get rid of these coats, like I have gotten rid of nearly all of my clothes over the past year or so. I am absolutely a size, or possibly more, larger than I was before lockdown, and that is a size larger than I was the year before lockdown. I get rid of clothes that don’t fit and I move on with my life. I know I will do that, but today I just need to throw a little hissy fit about it and let it all out.
I am more recovered than I have ever been. In fact, I’d say I’m possibly fully recovered, or maybe 99% with a very small quiet ED voice that peeps up every now and again, that I mainly ignore as there is no place in my life for it. I’m certainly a success story compared to my past self. I very rarely act on any of my ED thoughts, which in a way makes days like today harder, because I think it would be easier to channel my upset at the coat saga into a Grand Mission To Lose Weight And Make My Life Better, but instead I have to sit with them and put up with being the size that I am. And that sucks some days. And it’s exhausting and annoying to still be managing this years down the line. But manage it I will. Because life beyond my ED has been (for the most part- because nothing’s ever perfect) beautiful.
So I’ll have a cry and remind myself that my body is doing what it’s going to do and that fighting it got me nowhere, but giving up got me here, and here is full of joy, if I accept it just comes in a larger coat size.
Failing at treatment
So it turns out commitment isn’t enough in the end. I tried my best. I really did, I promise I’m not lying to myself or the world out there when I say that. I ate all the scary things and broke all my rules. I’ve done it day in and day out for the last 7 weeks. I’ve gained a little weight and didn’t freak out about it. I caught myself body checking nearly every time and talked myself out of it. I’ve kept my food diaries and attended my appointments.
But, and this is what it comes down to, I purged three weeks ago once, then again once last week, now this week twice. My therapist was flexible the first two weeks it happened because she could see how hard I was trying but if it happened this week then game over, treatment is done. Its officially not effective for me so there’s no point in me still attending. I will be discharged and that’s it. That’s the way the treatment approach works, that what makes it effective apparently. I’ve had my chances, and I have been very fortunate with all the help I have been offered, I know how lucky I am. But the reality is that the treatment available hasn’t worked for me and I have to accept that now.
I can sound rational about it but inside I’m petrified. When I first sought help my greatest fear was that I would reach out and it wouldn’t make a difference, and in some ways that fear is coming true. But in other ways that’s not actually what’s happened. My life is so much better for the treatment I have received: I am so much more open about my difficulties. My dark little world has lots of wonderful chinks of light in when I look for them. My weight is relatively stable and for the possibly the first time since I was 9 I am not trying to lose weight. I can skip a run when I don’t feel like going. I can keep most foods in my house without binging on them (still not 100% there but so much better), I can eat in restaurants or in others’ houses without purging. I can drink an iced coffee and trust the world won’t end! had an ice cream in the sun last week and didn’t cry! Miracles are happening!
I could lie tomorrow at my session and say nothing happened, that I didn’t use behaviours. Believe me I am tempted to do that, but really what would I gain from that? And I respect my therapist too much to abuse the service in that way. The reality is that the best evidence based treatment there is out there has not worked, and so continuing is just wasting resources that could be spent on someone who does respond to it. I have made so much progress, but I am still purging on a regular basis and maybe now I need to take stock of where I am, make sure I don’t slip backwards, but also accept that maybe this will be a part of my life forever. I can keep fighting to maintain the progress I’ve made, but I think I’m too tired and too beaten to keep trying and failing with getting rid of behaviours completely.
Maybe this will change in the future. Maybe I’ll be ready to try again on my own. I’m not discounting the possibility of full recovery for me, but I can accept that the conditions of the treatment available is to stop purging and I haven’t been able to do that. So I will be honest tomorrow, and I will accept the consequences of failing at treatment for now. But if stop for a moment, close my eyes and take a breath I can find peace with this. I can be okay. I will be okay.
Challenging fear foods and food rules
Food challenges. Ugh.
This is a part of recovery I’ve only ever touched on, and I think it is one of the main reasons I have been stuck in quasi recovery, taking two steps forward, one back, one forward, two back and on and on.
It is a core part of CBT-E but I’ve yet to had a therapist really push it. Part of this is probably because I’m sneaky and I can look like I’m challenging myself but actually I’m always up against the boundary but never quite over it. I change the rules, I’ll compensate, I’ll hold back just a little or sometimes I’ll outright lie.
The nature of outpatient treatment in the UK is that across the two different services I’ve been with, the four different nurses/counsellors/therapists- none of them have actually seen me eat. They’ve made meal plan suggestions, talked me through the ‘healthy plate’ etc. but have never seen me actually eat. They’ve never even really seen my food- once I showed a counsellor my lunch and she just looked at the different pieces (I was going through a small bits of lots of things phase which involved various Tupperware pots) and labelled it disordered and told me I need to stop that (that really helpful sentence…).
While they’ve certainly stressed the need for structured eating and sufficient calories, the onus on designing the meal plans has always been mine. So a great looking ‘pasta and veg’ on the meal plan actually means a tiny amount of red lentil pasta with mostly veg , chopped tomatoes and herbs if Im feeling wild. ‘Yoghurt and grapes’ as a snack means carefully measured fat free natural yoghurt with 12 grapes. ‘Peanut butter on toast’ means a tiny spread of one brand of peanut butter on one band of bread very carefully worked around my other meals for the week. There is always a rule, always a complex calculation, always an attempt to quieten the voice that tells me I’m a failed anorexic and it doesn’t matter how little I eat I will never be thin but I must keep trying anyway as imagine how huge I’d be if I ate normally.
But this time I am committed, so with that comes a pledge to be honest with my nurse about the rules, the thoughts, the worries, the rituals, that are tied to my approach to food, and to face the horrendous anxiety and panic that this will provoke. The decision to recover is made, and this is part of it, however much I wish it wasn’t. But this might be the key to real freedom, so surely it’s worth a shot.
CBT-T week one
I’m sitting at my desk feeling overly full after lunch, so I’m writing to distract myself from this horribly uncomfortable feeling.
I do think I am physically full, but I know I had a chocolate bar as part of lunch and I think that is adding a dollop of mental fullness too. If I’d had a ‘safe’ food after lunch, say some extra veggies, I don’t know if that would be making me feel this uncomfortable and anxious, so I’m guessing part of this is ED mind games. I’ve been spending a lots of time thinking about ED mind games these last couple of weeks. I’m two sessions into my CBT-T programme (10 weekly sessions of CBT-E) and I have had to be on continuous alert for ED trying to mess things up.
In my first session the ‘homework’ was to write and follow a structured meal plan. It didn’t matter what was in it, but it had to be three meals and 2-3 snacks per day. Had this actually been my first ever session of treatment that would have been an impossible challenge from where I started, but although I was out of structure with my most recent dip, in general I can manage this.
So I set about my first week, determined to give it a good shot. The first thing ED clung on to was that my nurse had said ‘it doesn’t matter about what you eat, it’s just about structure’. All ED heard was ‘it’s fine for you to eat the smallest amounts and restricted in range as otherwise it means you’re greedy and fat and weak’. I couldn’t shout down that argument the first few days, so while I did great with structure, I know I didn’t eat enough calories for my needs.
Originally I thought I would have to wait until the next session to tell my nurse that what she said made it too hard for me to eat more. But as I thought about it more that seemed like a cop out, and a blatant ED excuse. I know how that conversation would go – ‘I tell her that’s what I heard – she’d say that obviously wasn’t what she meant and that was ED voice trying to persuade me- I’d say I know that but it’s hard – she’s say yes it is hard but only I can challenge ED- she can help me but she can’t do it for me’. Why would I waste one of my ten sessions on that conversation when I know the answer already. Sure, it’s easier eating more when someone is telling me to do it, but that is not sustainable for long term recovery.
So I turned it around and upped my calories and ended up with 4 pretty decent days and a week of no purging. This is a big deal given I was back to regular purging in the last relapse. When I showed the meal plan to my nurse she was really proud of me, which meant that I was proud of me too. ED was hating this and shouting out the narrative of ‘you’re not actually proud you’re just relieved you could eat enough and that’s pathetic, and you’re pathetic for not being strong enough to starve’ but I’m working really hard to ignore that. It’s a tired old story and it has no place in my life now.
I’ve gone back and forth so much around recovery but the decision is made now, I am giving it a proper go, and I will make the most of this treatment opportunity. I am trying to become a person without an ED, so I cannot listen to something that I don’t want to exist.
One week done, I’ll remain cautiously optimistic and keep moving forwards.
When the going gets tough…
…the tough eat their meal plan anyway.
It’s okay to have bad days, but behaviours won’t solve anything. My eating disorder doesn’t help, it harms.
It’s time to figure out some other way to cope.
Commitment
I am committed this time. I can see that what I have tried hasn;t worked and I need to let it go. I’m never going to be the the anorexic I so desperately wanted to be. And that’s okay, well it will have to be okay, because I am so many other things. I have a full life and I do not need my ED in it any longer. I have to make room in my life for ED now, and that is coming from my career, my friendships, my relationships. I am choosing my failing dream of being thin over the potential for a family, my PhD, social experiences, and that is a decision I will surely regret later, so I have to make a different choice.
I dread the inevitable weight gain but I know I can’t fight science and also I feel now that body could do with a chance at being properly healthy (not food restriction ‘healthy’). My mind could also – I am so fed up of feeling so crazy around food. I have been a valuable opportunity at a relatively good time and I need to make the most of this. I need to show I’m grateful by giving it my best shot. I’m nervous as the reality of addressing some food rules which have governed my life for years is likely to be pretty tough, but I’m tough. This is my chance to be free, so yes I am committed this time.
Committing to a final offer of help
I saw my counsellor yesterday and I had to admit what has been going on in terms of my behaviours. It wasn’t exactly fun. We discussed, as we always do, that not eating sufficiently, regularly and with freedom will always bring me back to binge/purging and that there is no way out of this without accepting that I need to expand my eating and I need to tolerate the weight gain. I still get frustrated with these conversations as if I could tolerate the weight gain I wouldn’t be in this mess, but I just can’t seem to manage it. But she’s right in that there is no other magic solution, so I either get disharged or commit to what she is offering.
What is available to me now is a 10 session structured CBT programme as part of research project. It’s based on research showing early success with a ten session version of CBT-E (typically 20 sessions). I have had variations of CBT-E now and when engaged and active with it, I did respond quite well. However, it was always my slightly adapted version in that I while I managed the structured eating of 3 meals and 2/3 snacks (that 3rd one at night is always tricky!), I never committed to extending my diet, and therefore was continuing to restrict. Had I been particularly underweight this might have been addressed, but as I was always teetering around normal no-one ever seemed to challenge it, and therefore ED kept his nasty claws in enough to keep me trapped. My current counsellor is on to this though and has clearly stated that I can choose 3 dislike foods but everything else has to be considered (only 3 – you can imagine my panic levels right now…). The research is solid, or at least as good as it gets in ED outcomes with a 42% abstinence rate from binge/purge behaviours at 3 month follow up and significant improvement in self-reported psychopathology.
I really want to be part of that 42%. I’m sceptical, but that’s perhaps to be expected given my history. But equally maybe my knowledge and skills gained over that history might help. Really, the only thing standing in the way between me and a life free of ED is me.
We had a good (sniffly sobby) discussion and I signed up. I should start in a month or so. I do 4 weeks and if I can’t make the dietary changes and abstain from purging then I am discharged at that point. Tough love, but it makes sense. No point continuing with other aspects if eating commitment doesn’t happen. I’m scared that this is my final offer, and that if it doesn’t work I shall be on my own to figure it out. But at the same time I’m aware that I have been very privileged to have had all this help so far. If I can get to 10 weeks behaviour free (including restriction) that will be the longest period in quite a while, which might just give me the boost to keep it going. I’m mostly petrified and stressed about it, still debating whether I do actually want recovery (as only perhaps other people with EDs will understand) but there is a glimmer of determination that hasn’t been around for a while so hopefully that will grow. We’ll see.
My quiet roar 