update time

i feel like i am actually recovering. I’ve gained a few kg over the holiday period without overeating. It is terrifying but also not surprising how rapidly the weight gain happens when you rehydrate, replenish glycogen stores etc. I feel much stronger; tasks that used to feel painfully arduous are now routine. I realize now that much of my depression was associated with the levels of exhaustion I was under. Several years ago when I was sick with BN/EDNOS I was convinced my life would be perfect if I could only stop bingeing for good. It turns out that pure restriction is hell in its own way, and the chronic deficit of energy slowly but surely grinds your life to nothing. It’s only now that I am able to sit up and type without being in pain that I realize what pain free feels like. I know right now that if I want to eat at 6am it won’t necessarily send me into a panicked state and trigger further restriction later on in the day. I still feel guilt and fear but it has become more of an episodic challenge rather than the dominant mental state. A tip to anyone struggling – I can’t emphasise enough the importance of consistently increasing the calories *and* introducing variety. I am breaking my anorexia’s rules by using what it perceives to be my disgusting weaknesses against it: creativity, spontaneity, compassion, sense of responsibility, curiosity, humour. I am taking steps to recover parts of my personality buried under illness, things that anorexia can’t give me. I realized no drug can make me want to learn if I am starved and empty; that I will never get a better job if I am paranoid and frail. I saw that the world kept living on without me, and I imagined what life would be like if I disappeared. I feel like I’ve been standing on the edge of life, peeking and slowly pulled into surrounding vacuum.

Anorexia, for me, is premised on self-destruction as a means of legitimizing continuous existence, buying forgiveness for my weaknesses, shortcoming and faults. It is simultaneously embarrassing, repetitive, sad, myopic and yet uniquely powerful as an experience. Anorexia is a deeply spiritual disease that elicits a level of commitment that I will probably never be able to replicate in any other area of my life. I am in love with my illness, and this para is a conflicted love letter to someone who has hurt me every single day since we met. It picks me up, reassures me, makes me feel like I am not alone. I am never good enough for it, but at least nothing else hurts or matters anymore. I really can distinguish it from my own personality now, which ought to be scary but instead it feels comforting, compelling, significant. It’s really difficult to explain to people that haven’t been through it that it really isn’t all or even primarily about appearance; that weight loss is merely a symptom of a latent and complex mechanism or logic. Restriction feeds the disease and makes it stronger; there is absolutely, for me at least, a sense of sharing my mental space with someone else. Anorexia sits on you and you slowly shrink beneath it, paying a heavy price for anything that ever made you an individual. You develop a compulsion for self-hatred that can be triggered by anything remotely associated with gratification. If you did something, enjoyed it but didn’t suffer to get it, anorexia will make you suffer later just to relieve the steady stream of intrusive thoughts that tell you that you don’t deserve it, that you are disgusting, that you should be crushed and you need to die a protracted death on precisely the terms it dictates you. Subsequently mundane tasks and decisions start to take on near-mythical significance. An hour spent choosing the brand of bread for your toast isn’t just about the nutritional value or net averages or BMIs or whatever; it’s an hour spent trying to convince yourself you deserve sustenance, that you will be able to live with yourself if you eat this thing, that there is still hope for things to get better. Every last boring detail is dramatized to the point of absurdity. Each moment in the smallest decision is a life-and-death inner dialogue, a constant negotiation between doing the bare minimum to physically exist vs silencing the one voice that makes life feel worth living.

An eating disorder is just one of the many shitty things that could happen to you with the right genetics and environmental influence; it is not necessarily any more or less intense, interesting or difficult to survive than any other neurological/psychiatric problem. For me however it remains my biggest challenge, as it perverts my thoughts and orchestrates my feelings in a way that is subtle enough to convince me I am the one in control. There is a cliche that eating disorders are ‘about control’ but that’s just one of the many metaphors that begin to approach its phenomenology, the what-is-it-likeness of the thing. I think I would argue that anorexia for me is more of a compulsion to lose control, to stop competing, to make predictable and manageable the levels of shame I feel for my mistakes and ‘failures’ across multiple strata of my life. Rather than hand-wringing about ‘western ideals of beauty’ perhaps we ought to question the type of society we are part of, and whether we are happy to live in a world where a human life is only worthwhile insofar as it can compete in an anarchic market space. Surviving this round of illness has left me completely battered; I don’t have a clue what to do next and whether I even have it in me to rebuild everything once more. But it has given me a few things, and one of those is the absolute certainty that I want a world order where everyone has a place and a purpose, and once I am strong enough that I intend to help build it. I hope 2019 gives me a chance to act on my convictions. /rant

patient support group: embarrassment

first time i’ve ever journaled my experience of my hospital patient support group, but i really think it’s worth it. For context, it’s a two hour session for any current or former patients at my ED service regardless of circumstance to come together and talk about their struggles. It’s organized by two paid facilitators, both with lived experience of EDs and now fully recovered. One of them I believe was actually a patient on the ward.

everyone there feels like.. i feel like i will remember these people and that room many years from now.

We talked a lot about feeling embarrassed. Blue hair woman who has been very quiet for the last few weeks – to the extent that I’ve been worried and almost frustrated with with her for holding back – finally spoke up. She brought up feeling different and inferior, because she felt like most people in the room struggle with restriction, whereas she has ‘the opposite’ problem of bingeing and purging. Several of us were quick to reassure her this is not the case, and then the room opened up about a range of things we felt made us different and less than, and scared of judgement. It felt so strange to me to think that there could be any way in the world she would feel inferior. After all, she is so much smaller than me. The weight-restored woman was very down this week, particularly about looking healthier and people not expressing as much urgency over her meal plan as they may have done in the past. I tried to tell her that I believe her, that nothing about her would ever make me question her struggle. I also told the room that I feel isolated, and how some of my own cowardice in recovery is feeling like gaining weight will deprive me of the only space to which I feel like I tenuously belong. We also talked about using our loved ones as sort of life rafts or anchors in recovery, to the extent that can end up quite controlling. I was almost shocked to hear blue haired woman describe eating with her brother as a sort of musical piece that needs to happen in total synchronicity, or else she feels the need to reject the meal and reject any semblance of caring about it. I made a few parallels with my own relationship with R and particularly the very nascent stages of recovery where I would get upset about him eating faster or slower than me, and also being very disturbed if he needed to sleep when I needed to eat, or conflicted if he missed a meal for any reason. It made me think of how angry I got last time he brought some of my favourite foods over without my explicit blessing – not because I was expected to eat everything but because there are things about sharing food and eating with other people quite apart from the food itself that I do like, that I do crave/miss and are so hard to fit in and around my disorder. I made the room laugh on several occasions and this week more than any other week people addressed me directly or cited something I said before launching their own thought process. I felt very happy. Suddenly all the lethargy and desperation and fear was gone, and I felt completely present in the room and able to listen and contribute and learn something. When the two hours were up I felt a pang of sadness, but then coming home and writing this makes it all feel less effervescent, atomised and weird. I will never forget that little room. Maybe the first room in my recovery.