Wednesday, September 25, 2013

"exquisitely on death's doorstep"

Over the weekend, I read this post (and the linked post at The Kartini Clinic's blog along with the discussion about the article on Facebook and Charlotte's second post on the topic). I've been thinking about it ever since.

I have two (at least) separate strands to my thoughts and I'm not convinced that I can create a single coherent post ... However, it's worth a try!

Firstly and perhaps a topic that I should save for another post, I was taken aback by some of the antagonism between adults with eating disorders and the parent advocates. While most outsiders would believe that we are, or should be, all fighting for the same goal, there seems to be a lot of disagreement over how that goal should be achieved. As someone who hadn't really heard of FEAST and their work until a couple of weeks ago, I've found reading some of their posts, advice and research very challenging ... and extremely emotional. Therefore my instinct about the antagonism is that both sides, the adults with long-term EDs and the parents who have children with/recovered from EDs, find the other to be unsettling. A 16-year old with anorexia told me back in June that the thought of becoming me (i.e. if her eating disorder continued) was horrible and going to be motivation in her recovery. Which felt pretty crap at the time because no one wants their life summed up as someone else's idea of The Worst Thing Ever. But it's obvious that any parent seeing adults who've been struggling with the illness for 20+ years would want to do all that they can to ensure that this is not the future for their own daughter or son. Whereas those of us who see the children and teenagers getting better with new models of treatment can't help but grieve for our younger selves. And I can imagine that, rather than facing that grief and sadness, some people might choose instead to challenge the validity of that treatment model.

Hopefully, this is a segue into the other strand of my thinking to do with the reported speech of a clinician who described seeing a patient for 4 years of therapy while that patient was "exquisitely on death's doorstep". Rightly, this report led to a great deal of debate at the time (you only need to look at the comments on the Kartini blog post to see how heated the discussion became).

My own take on it is rather difference. Having been refused treatment in Cambridgeshire because I was poised in a chronic state from which they couldn't guarantee any tidy outcome to report in their figures for NICE (or whoever it is to whom health authorities are now accountable) and having become suicidal from that experience, part of me wishes to applaud the therapist for offering some kind of support to an individual with an isolating and debilitating illness. Clearly, we can all agree that someone "on death's doorstep" would be better served by an inpatient experience. However, none of us know the reasons why this was not possible for this person. If it was in the US (which I think it was), perhaps there were insurance issues at play. In the UK, my own experience has taught me that some eating disorder services will not offer inpatient treatment to individuals who do not fit their own narrow criteria for admission, even when that denial is condemning a person to an existence that barely qualifies as life.

And that is where I find the clinician's description to be verging on offensive. Because there is absolutely nothing "exquisite" about being desperately ill with anorexia. Whether it's waking up in the morning and feeling unable to face another 24 hours of constant thoughts about greed and fat and food and purging and needing to buy more iceberg lettuce from Morrisons (and being ashamed because it's all you buy and the shop assistants there all give you judging looks as you put the salad, cheap diet cola and sugar-free icepops on the checkout) and walking and being too cold to get out of bed but hating yourself for the laziness if you don't. Or whether it's the physical stuff: bleeding, chapped hands. Body covered with downy hair. Stinky breath. Sleepless nights. Peeing as you vomit. Anal leakage as you walk down the road in Cambridge and have to meet with someone but have no change of clothes and no way to get clean.

I could write more. I could talk about the stuff we all know in terms of organ damage and my friends who've had heart attacks or gastrectomies. Or died.

But it's the piss and the poo that, to me, is the clearest way to deromanticise the notion of a beautiful thinness, an exquisite skeletal existence. Because I imagine that patient, if she'd been speaking at the conference, would not have described those years of hell as exquisite, even if she'd thanked the therapist for supporting her through them and not making her face them alone.

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