Claire's Story - Two Perspectives on Eating Disorders

In this guest blog Claire takes time to think about her experiences of Eating Disorder services as a patient and NHS staff member, and asks explores some questions around the changes to the Diagnostic Criteria.

Let me tell you two little stories here, both of them true :

In the first, it is 2003. I am being weighed by a cheerful nurse. I have been living on this ward for some five weeks, much to the consternation of the other girls in my room who cannot understand why I am not subject to meal plans and constant observations like they are when I am apparently “much thinner” than them. While I am being weighed, I complain about this to the nurse, for no particular reason other than I hate it here, and I am cold, and I am one of nature’s born complainers.

“Well” he says “you know,if you were normally anorexic you wouldn’t have been admitted weighing as much as you do”

(is that so? hisses something in my head. Interesting)

The second: 2012. I am talking to a woman who has spent much of her adult life in psychiatric hospitals. She is telling me that she wishes she were anorexic; when she saw people on the wards who were clearly desperately underweight and other people were appalled, she was actually jealous.

I ask her what they had that she wanted.

“Everyone believes them,” she said. “they get looked after. They get rescued.”

The casual observer, or even the (formerly?) eating disordered observer, might have a lot to say about that theory, much of it outraged. I mean, it’s not the eighties any more, am I right? We know enough now to know that eating disorders are serious, that they ruin lives and sometimes end them, that people don’t develop such things in order to be looked after, that there is far more to it than a rescue fantasy. We know all this, as observers and sufferers and professionals.

Except, it seems to me, we really don’t.

Let me declare an interest here: according to the last paperwork I saw on the subject, I have-and have had for some two decades-what is generally called an “atypical eating disorder.” In my particular case, this is a fraught relationship with myself and with food that had roots in another psychiatric condition, one which wove itself so successfully into the lies and misrepresentations that surround the development of any eating disorder that even in hospital I usually got away with blue murder because “she’s not properly anorexic, there’s no need to watch her.”

This is important, because it means I am very, very good at lying about what I do to myself

This is important, because though as a professional I may tell that woman she was wrong, really I know perfectly well she was right.

In the UK, the standard diagnostic guide to mental health conditions is the ICD-10. In terms of criteria, many are reproduced straight from the DSM, the US equivalent. Earlier in 2014, the DSM published its fifth edition, which made numerous changes to categories and individual diagnoses. Not least among these were some revisions to the diagnoses of anorexia (an upper weight limit was removed), bulimia (a specification of how frequent purging behaviours must be was removed), and the complete removal of the catch all Eating Disorder-Not Otherwise Specified, which means basically nothing and which is where previously both myself and the painfully honest woman from earlier would have resided.

The UK’s primary eating disorders charity, Beat, estimates that 50% of people with eating disorders would have previously come under the heading of ED-NOS. I’m assuming they didn’t all vanish in a puff of statistics when the DSM-5 was published. So, you ask, where are they?

And I answer, shaking my head in disbelief: probably not being treated for their eating disorder.

I’m deliberately not explaining the criteria that were removed from the diagnoses here. Eating disorders, all of them, are malevolent conditions that take hold in anxiety and silence and thrive on vicious number games. I would argue, from both sides of that particular fence, that this is precisely why placing a numerical value on them in order to treat them is like rearranging the deckchairs on the Titanic, and I won’t play that game by using those numbers. For our purposes, it’s enough to know that when the cheerful nurse told me a “normal anorexic” wouldn’t even have been in hospital at my weight:

  1. I was significantly below the BMI limit set at the time for a diagnosis of anorexia, and physically very unwell as a consequence
  2. He was telling the truth. To access any of the eating disorder services on the NHS, 2003 me would have a good way further downhill before anyone could put the brakes on.

Mental healthcare on the NHS is subject for its funding, like all NHS care, to Payment by Results (PbR). This is more or less exactly what it sounds like. Far more articulate critics than me have argued for and against this method of funding mental healthcare, but what’s important is that in order to maintain the funding for these highly specialist services (dedicated ED services, community and inpatient, are “tertiary services”) patients must meet severity criteria.

Comments (1)

  1. Amb:
    Dec 10, 2014 at 03:28 AM

    See this post was so well written and so on point in every way that it's terrifying.

    And then I think that I'm so close to being a patient on the Naomi unit (less than like idk 35 days) and a much as I'd love to believe all the super wonderful professionals I'm currently working with at home or in touch with at the unit. The fact that the criteria and founding is so close together is terrifying and almost enough to make me want to back out in case it get's pulled before I'm even close to being ready, especially after I tried so hard to maintain a decent weight after my last IP admission so I could try even harder on the therapies rather than the pain of having to gain the weight and being left with very little time for any therapeutic input. But then everything just seems so rushed and scary.
    It was just really really unfortunate that it ended up how it did, because being diagnosed AN- b/p type was bad enough but the fact I now see myself as being back to Bulimic simply because my weights higher from IP is really difficult to deal with.
    Mostly because I use exactly the same behaviours I did before, I just tent to take part in a lot more b/p throughout the night and a lot more walking.
    Knowing I'm more unwell now and for the first time really choosing to get well and acknowledging fully I have a problem after 12 years, nearly 13 is scary with the thought founding will probably be ripped away from me.

    This post just really jumped out at me and again, it is scary but very real.

    Also the 2012 story really broke my heart, that's so upsetting. First thoughts are always '' why on earth! Take it! Free to good or bad home!'' but then it hits you that it makes sense. Regarding any kind of invisible illness, it's not looked at as much if it's not seen as physical. Sometimes even professionals in the MH service forget that yes... it literally IS ''all in my head'' I know I've felt like that before at times where my ED has been less time consuming. Getting the usual '' but you're such a pretty girl and you're trendy and have great hair ( that's fake haha)'' And it used to push me so far back into '' fine! No one is going to help me with this and my ED always has my back and shows people'' which is ridiculous, but you never really think that at the time.

    Everything about this post really did just hit home. Really good to read as well. :)

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