Today I have the distinct pleasure of writing about one of my favourite articles about eating disorder recovery by Malson et al. (2011) exploring how inpatients talk about eating disorder recovery. I have personally found this article to be very helpful in understanding some of the difficulties of understanding and achieving recovery in our social context.
As Malson and colleagues explain (and as we’ve established), eating disorder recovery is elusive. Often, poor prognosis is described in relation to individual factors, including:
- Treatment resistance
- Hostility
- Opposition
- Ambivalence about change
- Ambivalence about the possibility of change
Problematically, seeing these as the primary reasons for which patients do not recover can make individuals with eating disorders themselves feel as though they are to blame for their “inability to recover,” which help approximately no one. How do patients internalize these kinds of framings, and what impact does it have on how possible they feel recovery is?
Malson et al. used discourse analysis to explore patients’ perspectives, looking at how these participants felt about themselves currently and imagined their future “in recovery.”
THE STUDY METHOD
To clarify, critical discourse analysis is a methodology that social scientists use to look for how power surfaces in interactions. By looking closely at how people talk, we can uncover sometimes-subtle expressions of power and power imbalances that inform how we think about people and concepts. In a (very reductive) nutshell, one of the main foci of the approach is the idea that language is not neutral, and the way that we talk (including the common expressions we use) can have power for how we understand ourselves and others. To do critical discourse analysis, researchers generally focus on similarities and differences in sections of talk and then situate these within social context.
In this case, the authors analyzed interviews with 39 individuals (age range 14-45, 38 women and 1 man, 31 hospitalized at the time of the study) diagnosed with AN or BN who had experienced hospitalization for their eating disorder. Though interviews were quite comprehensive, the results the authors present in this article hinge on two questions in particular (quoted verbatim below, from page 27 of the article):
- Would you describe yourself as being on the road to recovery or not?
- From your point of view what would it mean to be recovered?
The results can help us to understand how participants talked about recovery, what it is, and how it applies to their current and possible future selves.
THE MAIN RESULTS
Eating Disorder as Normal vs. Eating Disorder as Problematic
Participants related to their eating disorder in complex ways, often seeing the eating disorder as a “waste of time” or as getting in the way of fully living their lives. For example, one participant said:
Belinda: They [others] just say, they’ve had it for a while [inaud.] and then they say don’t let it, you know, take your life ’cos you see so much go by and you miss out on so much. And I just, I don’t want to like waste my life away. /Int: mm/ I just don’t want to see all good experiences go down the drain.
“Unimaginable” Recovery
Seeing the eating disorder as a problem and seeing recovery as something to strive for, however, did not mean that participants saw if as something that could be easily achieved, or even something that they could fully imagine. In their present circumstances, participants sometimes described recovery as “scary,” “bleak,” unimaginable, or uncertain. For example:
Becky: Take it day to day, cos if I think too far ahead then it’s just too scary. It’s just too (.) bleak at the moment, so (.) that’s all I can do. And if I think of myself now and being better then I just can’t see myself ever being that, so (.) like I say (.) it just makes me think: oh God and where do I go from here.
Why Unimaginable?
Recovery as “unimaginable” is tied up in the role that the eating disorder played in many participants’ lives, and, as Malson and colleagues describe, into the social context we live in. There is a well-acknowledged split between the kinds of strategies imposed in treatment for eating disorders and the preoccupation with body image in contemporary Western culture. More than that, however, individuals with eating disorders might find that their sense of self is tied up their eating disorder.
The authors suggest that when individuals with eating disorders are described as, and come to internalize, the identity of “the anorexic” or “the bulimic,” it becomes even harder to imagine a life without the eating disorder.
Externalization
Some participants combatted the conflation of their self and their eating disorder by externalizing their eating disorder. I wrote about externalization in more detail in this post about narrative therapy, so I won’t go into depth here, but the authors describe how some participants found externalization helpful in making the state of “eating disordered” seem less permanent.
Externalization does not necessarily mean calling the eating disorder “Ed” or giving it total agency, but surfaced in these participants’ accounts as an ability to see how the eating disorder was not the whole self, and being able to see the negative impacts of the disorder on the self:
Rachael: Like just me getting over it would be so good because you just have, it’s just one of those things that takes so much of your time and so much out of you /Int: mm/ And it has made me more tired and a more irritable person so, sort of, relations with your friends as well ’cos they’ve been damaged by it as well.
Complex Recovery
Recovery was, predictably, more than just no longer meeting diagnostic criteria for an eating disorder. Participants in this study saw recovery as:
- Escaping concerns about food, weight & shape
- Being happy in their lives
- Having better relationships with important others
- “Living their lives”
Generally, recovery was multidimensional (like it was for Bardone-Cone et al.), comprised of emotional, psychological and social domains above and beyond “physical” recovery.
IMPLICATIONS
I think one of the most important things about this study is how it highlights a few of the problematics of disorder-first language. Reducing people to their diagnosis is a powerful way of shutting down the other elements of a person that exist before, during, and “after” the eating disorder. How is someone to imagine recovery when one is reduced to their eating disorder? Getting rid of the eating disorder would essentially mean getting rid of one’s whole sense of self.
Another important element of this study is its emphasis on the fact that just because participants saw their current circumstances as imperfect and described their quality of life as bleak did not mean that participants could somehow “snap out of it.” This is an important consideration; “wanting” recovery does not mean it is easily imagined or easily achieved. This might seem obvious, but I think it bears repeating.
This study is fairly easy to reconcile with the recovery model presented in part 1 of this series; when they were able to imagine recovery, patients clearly saw their version of recovery as going deeper than symptom remission. Looking at this study together with Bardone-Cone et al.’s studies reinforces the importance of taking a holistic approach to recovery.
More than that, it demonstrates how patients themselves understand recovery and the possibility of achieving it. Understanding this might help us to better support individuals who desire recovery but cannot imagine what it might look like or how to get there. For starters, we can stop using language like “the anorexic” and “the bulimic,” wrapping people up into neat diagnostic category bows and allowing for the possibility of multiple parts of selves.
So, readers: how do you feel about the link between disorder-first language and recovery? Do you think that externalization can help in opening up the possibility of recovery?
References
Malson, H., Bailey, L., Clarke, S., Treasure, J., Anderson, G., & Kohn, M. (2011). Un/imaginable future selves: a discourse analysis of in-patients’ talk about recovery from an ‘eating disorder’. European Eating Disorders Review, 19 (1), 25-36 PMID: 21182163
Excellent post.
There is a preponderance of Cartesian thinking in all things dominated by western thought, and that necessarily includes even the term “mental illness”, let alone the binary elements of “recovered” and “not recovered”.
Andrea, your term “disorder-first language” is what I might call more broadly “label-first language” but both pertain to framing discussion in such a way that it emphasizes passive determinations rather than active evaluation.
The determining factor for intervention or care should be not the label or symptom checklists; it should be whether the individual feels harmed, limited, or diminished in any way by the expression of the chronic condition in question. That identification (made internally on an individual basis — certainly with appropriate professional input) drives an effort towards either harm reduction or remission, depending on individual preference and circumstance. (Please know that I do not view harm reduction and remission as a hierarchy of success. Both options are of greater or lesser value on an individual basis)
This issue of having your identity reduced to your chronic condition is one faced by more than just the community of those with active eating disorders — it is something that plagues those with diabetes, asthma, rheumatoid arthritis…as well as those with anxiety or depression.
It is a sinister feedback loop that creates increasingly acquiescent patients who agree to one-size fits all standards of care that subsequently realize worse outcomes than had the label never been applied in the first place.
A great series, thank you for this. Gwyneth.
Thanks for commenting, Gwyneth. Completely agree that Cartesian thinking continues to pervades Western discourse around mental illness and recovery in particular- there tends to be a discomfort with that which cannot be neatly fit into “either” “or” categories!
Ah yes, I think “label-first” may have actually been the term I was searching for. You make a good point that this language and the associated reductionism is present in many conditions; this is something that continues to strike a nerve for me, particularly when I hear clinicians using this kind of language in discussing “the anorexic” or “the bulimic”- it just feels like such an erasure of other elements of self. Even “the recovered individual” can come to obscure other elements of self, I think, and inform how people act in their social worlds. All of these labels can bear such strong value-laden undertones.
You wrote: “The determining factor for intervention or care should be not the label or symptom checklists; it should be whether the individual feels harmed, limited, or diminished in any way by the expression of the chronic condition in question”
YES, absolutely. I feel very strongly about this, which is one of the main reasons I approach my work around recovery from a critical feminist standpoint that allows me to take participants’ identification as suffering from disordered eating most seriously in exploring their experiences. I’m most interested in exploring what is most meaningful and valuable to individuals in supporting them.
Thank you for this. I first wanted to say that my one experience with label-first language in treatment was when we were going around in a circle introducing ourselves. The first girl said something along the lines of “I’m XXXX, I’m bulimic, I work for XXX, etc etc” and the therapist stopped her and said in a patronizing voice, “You’re not bulimic.” And the patient was very puzzled. And the therapist said, “You’re a person who struggles with bulimia.” I do think it is very important for clinicians and researchers not to use label-first language and even for people with eating disorders not to use label-first language generically about groups of people, but when referring to oneself, I think having someone imply that the way you identify is “wrong” is potentially offensive. I guess language does have power, but I think if it is to be addressed in a treatment setting, there needs to be more of a discourse than simply “you’re not allowed to call yourself that” because that seems like a parent-child interaction, which is very demeaning to someone who already likely does not feel 100% self-confident.
On the other note, I always get excited when I see research that focuses on ways to help patients recover other than by making them less “treatment-resistant,” which sometimes seems to be a nice way of saying “stop being so difficult and get better already.” I have been labeled (yes, another label) as treatment resistant, and it follows you around from institution to institution and kind of encourages clinicians to have pre-formed notions about you, about how difficult you’re going to be to work with, about the likelihood that you’re going to recover, and about how trustworthy you are.
And I think ambivalence about change is a very normal thing when you’re making a very large, important change. It seems to kind of be part and parcel of the “contemplation” stage of change (in Prochaska and Declemente’s stages), and in any change, it’s not often going straight from beginning to think about the change to the maintenance phase with no stops or reversals along the way, but often kind of vacillating between the stages. To say that because someone isn’t 100% motivated every single day or doesn’t 100% believe they even can get better is the reason they aren’t healing is an artifact of mental illness– you wouldn’t say that about someone with a purely physical disorder (I mean, if you literally lay in bed all day, it will surely hamper your healing, but feeling doubt and fear of staying ill forever and a desire to cling to the sick role/ fear of doing the hard work of moving forwards, which might be PT/OT, taking meds, etc in spite of it are all understandable for a physical illness and should be for mental disorders as well).
Thanks for commenting, Katie. You make a really good point in your first example- I would say there is such a difference between people with eating disorders choosing to refer to themselves as “a bulimic” or “an anorexic,” for example, and being labelled so by others, at least in my opinion. I totally agree that saying “you’re not allowed to call yourself that” really defeats the point, there. However, I get a bit touchy when clinicians/researchers/others use this language because of the dynamics mentioned in the post and the degree to which a “you are just your disorder” orientation can become internalized and prevent people from feeling that there is a possibility of not being that. A tricky area; thanks for bringing up this side of things.
Agreed about being excited about research aiming to facilitate recovery instead of labelling people as treatment-resistant! Like you say, ambivalence to change is more something to be expected in any major change rather than a kind of “what’s wrong with you” kind of thing. I’d love to see research specifically addressing the impact of the “treatment resistant” label; I would imagine that, as you wrote, it can follow people and make things that much more difficult.
Speaking to labeling in general, after several failed attempts with recovery, I was incredibly depressed and suicidal and anxious and had been cutting. The treatment facility I was in diagnosed me as borderline, which seemed like their way of saying, “You are being difficult. Stop making such a big deal out of everything, and get yourslef together.” It was terribly invalidating because the label itself is so stigmatizing that once it’s on your chart, it stays on your chart, and clinicians look at you as untrustworthy, “gamey,” chronic, and somewhat at fault for your eating disorder or at least having much more control over it than you feel like you have, like every time you use a behavior it’s because you’re trying to be rebellious and make a statement and not because you’re struggling.
Long story short, when I returned to college, I relapsed again, but both my home clinicians and college clinicians could not imagine why they had diagnosed me as borderline and said they had never even thought of that. At the end of the following school year, I readmitted to the same treatment facility, 120% more stable from a general psychiatric perspective, and they still called me borderline , which my home/ school team again disputed when I left.
This is not to say that being borderline is negative because some people really struggle with it and there’s nothing wrong with that, just that it is a highly stigmatized diagnosis, even moreso I believe than eating disorders. And it’s often used as an excuse for why someone is stuck and not getting better rather than exploring deeper, as if to say, “we can’t help someone who doesn’t want our help, who is overdramatic and overemotional and clingy and just a mess.” When you are “treatment resistant,” the helpful response is to say, what is holding you back? How can we help you move forward? What is so scary about recovery? Not to stick someone with a label and imply that they are choosing to be difficult, that they are choosing chaos over order. It took me forever to unteach myself that my eating disorder was my fault, that I chose it, that I should have recovered by now, that I had no right to get any help because I was taking resources needed by other people who were “actually” sick, that I was blowing something very small out of proportion. Some of these are very natural feelings to have, but every single one was exacerbated by the way I was treated.
I know this is kind of off topic, but I guess it kind of speaks to labeling? And how it is almost impossible to get unlabeled?