Eating disorders tend to have a revisionist history. Many of my research participants have commented on gaps in their memories around the experience of having an eating disorder; flashes of moments invade the present, interspersed with others’ retellings of their histories. Set in stone in clinical notes are the observations others have made; in eating diaries self-imposed or prescribed, our own bodily histories may dance across pages, disembodied or viscerally felt.
There are times when our memories conflict with those of others. Our stories may morph and change over time. As we become someone else in the eyes of others, our bodies may take on different significance for those seeing them. We aren’t the only ones to make meanings of our bodies, our recoveries, and our histories. To look at the pages and pages of medical history many of us hold, we are likely to find not the certainty we are looking for, but deviations and perhaps even embellishments. Objectivity is a slippery beast.
Today I went to speak, for the seventh time, about my recovery at the treatment centre I was treated at. I have a complicated relationship with these invitations – in one, I mark the invitation as a recognition of my recoveredness in the eyes of the establishment and fear that my presence and story reinscribes a particular recovery narrative. As I baked strawberry rhubarb squares on Monday evening, I wondered about the ethics of telling my story, and the balance between offering hope and telling a story that has already been told.
Time and again I settle on telling my story in the context of the treatment centre. I must admit that this is partially a selfish performance – there’s something about reflecting that reminds me how I have come far, which is particularly interesting as, believe it or not, I don’t actually think about how far I have come on any kind of regular basis. My recovery goes largely uncelebrated in my life, usually until something tests it. For all that I make a career of eating disorder work, I live in my present recovery without much nostalgia.
A more unselfish reason for the telling lies in the possibility of providing hope with at least some acknowledgment of the unfinishedness and imperfection of recovery to those struggling. It’s easy to forget, I think, that sometimes a rosy-ish story can be comforting, when I go on my rants about the need to complicate recovery. There was a time, I think, when I wanted the comfort of thinking recovery was perfect, and that may serve for a while. It’s a balance between hope and pragmatism every time I step into the uncomfortable position of role model.
This balancing act is often complicated – not only by my own memory of a time that was and embodiments that no longer haunt my flesh, but by others’ selective and revisionist histories of the depth of my illness. Time and again, I find my psychiatrist asking: “when did you accept your diagnosis of anorexia nervosa?” or revealing how closely I toed the line between inpatient and day hospital. The truth of the matter is that I was not diagnosed with anorexia nervosa – I was diagnosed with eating disorder not otherwise specified, because my weight was just above the cut off and I (ironically) still menstruated thanks to the birth control pill. There was never any question of my being inpatient, at least not a question that was ever asked to me.
So why the revision, I wonder? My psychiatrist celebrates my recovery, perhaps in complicated ways tied into the need for hope within the eating disorder profession itself, when so many patients die or cycle in and out of treatment. Is the revisionist worsening of my illness a way to build confidence in systems that don’t always serve – and if so, what is the impact of this and where is the impetus for the system to change?
I also wonder: who is to be believed? Some might write off my interpretation of this revision as due to denial of the seriousness of my illness and believe the one in authority. But I am not in denial – I was very sick, and I needed help. Yet in privileging the diagnosis of anorexia nervosa as the most serious one, we miss those stories of people not diagnosed with anorexia but who struggle enormously and deserve help. Many people in larger bodies will never be diagnosed with AN and will be repeatedly told that they are “doing great.” After all, as Deb Burgard has been saying forever, “we diagnose as eating disorders in thin people what we prescribe in fat people.”
So I wonder about the ethics of this revision, and what it offers to our collective imaginings of seriousness. The diagnosis of anorexia is also more easily re-written onto my form, embodying as I do the privileges of whiteness, heterosexuality, able-bodiedness, middle classness, and relative thinness. Would it be so easily retrospectively applied to someone whose recovery body exceeds the expected?
My thoughts are unfinished, and don’t really relate to the beauty of the post, which is due entirely to these strawberry rhubarb bars, which happen to be gluten free and vegan, because everyone deserves delicious food. So perhaps the only real link is there – in that everyone deserves the deliciousness in life – and yet we socially inscribe categories around who is worthy.
[Strawberry Rhubarb Bars from Minimalist Baker]