As usually happens, when I spill my brain out onto Twitter I end up having some minor (or, let’s face it, major) discussions and disagreements with other Twitterites. It’s both a wonderful and a stressful experience, in part because one of the hazards of the medium is its rapid-fire and protracted style. Inevitably, discussions lose their nuance and some of what I am advocating for gets lost in the ether.
The latest discussion centered around recovery and how it is portrayed in the literature. I’ve been working on a meta-analysis of recovery studies, and commented that I was tired of the way that researchers tend to write about recovery as “becoming whole” or finding oneself. Because I am a critical researcher and a generally squeaky wheel, and based on some research I’ve done, I question whether this framing is helpful for all of those who have recovered/are in recovery/want to recover.
What I take issue with is how seeing recovery this way makes it seem as though people with eating disorders are somehow “fake” or “inauthentic,” or that they never recognize the seriousness of their disorders and/or want to get better. In saying this, I also recognize that there are times at which people with eating disorders may deny their behaviours, may not wish to seek treatment, or may even glorify eating disorders – heck, people in general may do these things as well.
However, what might get missed in this discussion is that there are also people who recognize that life with an eating disorder is incredibly unpleasant, want to get help, and can’t. There are people who are shut out of (some) recovery communities because they want to talk about the serious crappiness that can accompany life in general. There are people who were never diagnosed with eating disorders in the first place (because of marginalization, etc.) and so live in a funny limbo in between sick and well, unsure where they belong.
Maybe this discussion comes off a bit abstract if you aren’t familiar with the literature that exists on eating disorder recovery. As an example, I’ll discuss an article by Jenkins & Ogden (2012) that positions recovery as becoming whole; I think it’s important to preface this by noting that I am not saying that this study, or all recovery literature, is bogus, or that there’s no point in looking at recovery as “re”covering the self, for some. I just think we need to be having discussions that make recovery out to be a bit more complex.
The Study
Jenkins & Ogden interviewed 15 adult women who had been diagnosed with and treated for anorexia nervosa (AN). They used self-report of recovery, instead of measuring this with an instrument – as I’m increasingly learning in my stats classes, this might be just as well (see also this post about the issues with a common diagnostic tool one might use to determine if someone has an eating disorder or not, the EDE-Q). Unfortunately, we know nothing about the demographics of the women besides:
- Ages (range 19-49)
- Age of onset of the disorder (range 13-26)
- Where they received treatment (mostly in or outpatient eating disorder units, with some receiving private counselling)
- Whether they’d reached their target weight (3 had not) and
- Whether they defined themselves as recovered, in recovery, recovering or semi-recovered
I would really like to know more about things like race and ethnicity, socioeconomic status, body size, sexuality, abilities and more possible axes of marginalization. I’ll earmark this as one of my main areas of discontent in terms of the literature that exists around eating disorder recovery – discussions of privilege and how that impacts recoverability are pretty much nonexistant. Recovery is painted with a neoliberal, meritocratic brush; as though the construct were equally accessible to all if they only work hard enough.
An important note: I do not think that the researchers are purposefully positioning recovery this way, and I do not mean to imply that they don’t care about people in all of their complexity – I’m sure they care deeply. I only mean to point this out in terms of how to be more mindful of social justice in conversations about recovery.
What did they find?
Back to the study. The researchers interviewed the women and conducted interpretive phenomenological analysis (IPA) on the data. This method is intended to be “experience close,” or to unearth the meanings that participants have for their experiences.
They group the process of recovery into three areas:
- Being anorexic
- Process of change
- Being recovered
Within each of these, they found a number of themes (theme names verbatim from article).
1. Being anorexic was tied to:
- Anorexic behaviour: restriction, etc.
- Anorexic cognitions: thoughts, including denial, splitting between rational and irrational
- Anorexic voice: something held inside that threatened to overpower and/or drove behaviour
- Anorexia as a means of communication: coping through AN behaviours
2. Process of change was related to:
- Difficult journey: challenges in the process, need for strong supportive care
- Limitations of therapy: GP lacking awareness, being treated as a disease not a person
- Using therapy/relationships: gradual shifts to buying into therapy and working through challenges in therapy
- Managing emotions: connecting with emotions that emerged in process of recovery
- Acknowledging consequences of AN: seeing how AN impacted life goals
- Controlling AN voice: learning to ignore or shut down thoughts related to AN
3. Being recovered meant:
- Ambivalence about recovery: generally linked to weight gain, control, and achievement
- Benefits of recovery: or moving from ambivalence to seeing how recovery was a better way of achieving life goals
- Managing anorexic identity: or finding new things to define themselves
- Description of full recovery: moving beyond obsession with food/weight to comfort with self
Externalization
In general, the authors describe the process as women passing through a series of dichotomies on the way to a happier and healthier life. The authors firmly externalize the eating disorders, in line with what they heard from participants. In other words, the women’s “AN voice” is seen as distinct from and separable from the person’s voice or desires.
Now, externalization can be an incredibly helpful tool for many. Arguably especially in early recovery and/or for younger people, externalization can help to overcome some of the issues I touched on earlier that can be very real: like denial of the illness, not wanting help, etc. It can also be a helpful tool for parents and friends, who can identify “Ed” as the enemy in this scenario. But I find there’s a fine line with externalization.
Paula Saukko (2008) has written about this tension, exploring how sometimes externalization can be complicated by how the “AN voice” and the “authentic voice” are not always very distinct or separable. Some parts of the eating disorder are adaptive in other parts of life – a cautionary note is that, again, I am not saying that eating disorders are good or helpful – things like perfectionism and control are actually highly valued in society, and might be part of a person’s personality regardless of their eating disorder.
When you really start to think about it, it is also challenging to fully distinguish the ED voice in a world that, essentially, speaks fluent “ED voice.” I’m not only talking about food, here, but also productivity and success.
Mind/Body
Another potentially problematic way about the way recovery is described in this article is that it re-entrenches a split between mind and body. What do I mean? Well, the authors write:
“Full recovery occurs when the AN voice becomes muted via relationships boosting a sense of self, which includes a shift in power from body/AN side to mind/rational side so that the mind/rational side can regain control and use language and relationships to express psychological distress rather than using bodily forms of communication” (e30)
The problem, here, is that you might notice that the body is associated with the eating disorder, and the mind with control. Minded, rational communication is valued over bodily communication. Now, that’s fine and all – being rational can be helpful and useful. However, there are other ways of communicating bodily than having an eating disorder (of course). People are not going to logic their way out of an eating disorder.
Elsewhere, the authors write about the need to bridge mind and body and bring them together in recovery. However, there’s a real sense in quotes like these that recovery=rational mind and eating disorder=irrational body in a way that colludes with some dominant ideas circulating in society: that logic will always win, that bodies can (and need to be) controlled, and that all people pass through a series of stages in a linear way toward a happy, healthy, and productive life.
Recovery: No One Size Fits All
Caveat number 300: it is not, and has never been, my intention to say that recovery is not possible, or that seeing recovery as a panacea or something happy and sunshiney is a bad thing. I think it’s awesome if people see recovery that way, and I’m very happy that they’re living their best lives. It would also be incredibly hypocritical for me to say that recovery could never be spectacular – I myself live a recovered life that is inordinately better than the (not much of a) life I lived with an eating disorder. However, I do think it’s important to note (as I also did in this post about body privilege) that my life would always have been easier because of my privileges. I am more easily able to navigate this world in the body that I have.
What this boils down to, then, is how we need to make space for those who live in complex relationships with their bodies, food, and their recoveries. Space for people who are fully aware of the distressing nature of their eating disorder, but are unable to access the kinds of support that might help them to work through this. Space for people who will never embody the norm, no matter how rational and logical they are. Space, I would argue, for people who live recovery “imperfectly.”
We are not doing anyone any favours by telling them that recovery is perfect – we’re setting many people up for disappointment. This is not because recovery is not possible, but because life is imperfect. There’s no one checklist to prove recovery, because recovery will necessarily be impacted by who you are and where you exist in society.
All of this, of course, is complicated by a broader discussion to be had about what an “authentic” or “whole” self is, anyway. I could probably wax philosophical about that for a while, but I’ll spare you for now. At the end of the day, it boils down to this: people will have different experiences of recovery. One is not more real or fake than another, whether that experience includes sunshine and rainbows, turmoil, or something in between.
Reference
Jenkins, J., & Ogden, J. (2012). Becoming ‘whole’ again: a qualitative study of women’s views of recovering from anorexia nervosa. European Eating Disorders Review, 20 (1) PMID: 21394835
What needs to change is the definition of ‘recovery’. At present, we are seeing a vast number people who are still practising some form of restriction – whether it be calorie reduction via intake, or ‘burning off’ calories by various forms of movement, while describing themselves – or being described by health practitioners – as ‘recovered’, because they have achieved an arbitrarily determined weight and body size and are no longer visibly starving or emaciated. However, weight restoration to a ‘safer’ BMI and weight does NOT equal full recovery.
One cannot be recovered from a restrictive eating disorder (the types of which are many and varied) while still practising restriction. There are many markers of active restrictive eating disorders being overlooked, while body size and shape are erroneously viewed as being primary indicators of a recovered state.
People, male and female, are limping from one R.E.D modality to another, but because they are no longer skeletal and immediately in danger of dying, being ticked off the list as being in a recovered state. Relapse states are inordinately high across the spectrum of R.E.Ds, and it is common to see someone cycling up and down from a dangerously low weight to a more stable, preferred and socially acceptable weight (as determined by an outside entity – often a therapist with no nutritional or dietetic qualifications), NEVER becoming free of restrictive behaviours and thought patterns, yet being described as “recovered”. Instagram, tumblr and facebook are flooded with posts and images of those who see themselves as recovered, while they are clearly still actively restricting.
Thin white privilege is very attractive to those who have had it all their lives, and very hard to give up in order to move through to full remission. And so the claim of being “recovered” is defended fiercely by those who are choosing to actively restrict so as to stay in a socially preferred physical state, and these are the ones we usually see going head to head with others, arguing that ‘their’ form of recovery is superior. The irrationality that is so often on display in these interchanges is in itself a poignant reminder that with restriction comes cognitive compromise – the physical brain that has had its myelin levels decimated by restriction is not capable of rational, reasoned and calm discussion about emotive subjects.
You might compare such infighting to conflicts between different groups of alcohol and drug dependents who claim to be recovered, while still using alcohol, while also arguing that their chosen ways of recovery are superior. There is no recovery from alcohol dependency, or drug dependency, while the very elements of addiction are still in play. The physical dependency needs to be interrupted; and the emotional and psychological processes that facilitate the abuse need to be eradicated, and the brain to be retrained in non addictive patterns. Recovery in those settings only happens when complete abstinence is applied and maintained. Anything less than this, drinking less, using softer drugs, stopping binging so often, is STILL active addiction, altho a form of “harm reduction.”
We need to see a distinction being made between “harm reduction” (which is what is in place when someone increases their calories, reduces exercise, and gains a limited amount of weight, and yet still restricts their intake so as to suppress further weight gain), and “full recovery to remission” which is marked by a complete cessation of restrictive behaviours, and a concomitant cognitive rewiring by means of sustained psychotherapeutic practise so that restriction is no longer the default response to distress or anxiety. This will also include the person being aware of the role getting into a calorie deficit plays in driving further restriction and movement so as to deepen that deficit, and being competent in strategies involving eating and resting that enable them to correct the deficit.
There is no need to assign a moral superiority to either pursuing harm reduction or full recovery. But it is necessary to see the difference between the two, and to be cognisant of the state in which we find ourselves.
One of the reasons that many who are not restriction free, but who have been told that they have “recovered” from an R.E.D have a perpetual struggle with restriction, poor body image, exercise addiction, as well as frequent relapses is that no one has helped them to understand that they have been practising not remission, but harm reduction, and that their continued existence in an active ED state makes them vulnerable to repeated relapse and prolonged psychological problems. People who have been told that they are recovered often have no idea that their R.E.D is still rampant, and driving every aspect of their lives, while also shortening their lifespan.
Let’s call it what it is.
Harm reduction does not equal recovery. Nor is it possible to reach remission from an R.E.D while you are practising remission.
You either ARE restriction free, or you are not. Again, no judgment. Rather a clarification of what remission means from a clinical and scientific point of view.
If we think of remission from cancer, what are we referring to? Are we saying that someone can simultaneously have an active cancer, while also being in remission? Of course not. Remission is only achieved after a certain period of being cancer FREE. And so it is with an R.E.D; remission can only be achieved if we are also restriction free.
Harm reduction is a start. It saves lives. But it also leaves people in a state of miserable limbo, only a few steps up from full starving emaciation, because we are still beset by the untreated and rampant anxiety that underlies the disorder – and usually because we believe it is more important to control our weight than to drive the restriction out completely. Transpose that into a situation where we are being treated for cancer – we choose not to pursue a remitted state because we don’t like the idea of how our body may look or function after (or during) the treatment.
Again – no judgment. We are creature of free choice after all. But for goodness sake (and also for the lives that this disorder ruins and ends every day), can we please get clarity on this matter.
Please join the movement to call active restriction what it is, instead of erroneously describing it as recovery.
I disagree with a lot of what you said, or at least the tone of it, but the issue, to me, isn’t really about what classifies as recovery or not. To me, the issue is with a very narrow view of the trajectory from ill to recovery and a very narrow view of how the ill state and the recovered state are supposed to look like.
Edit: Eh. I guess I don’t disagree with that much, but I dislike the tone. Like “shortening their lifespan”? So patronizing, no? If people feel better and consider themselves recovered and are satisfied, WHO CARES if you don’t define it as recovery.
Trouble is, until we have a clear and universally accepted understanding of what recovery actually ‘is’, then we can never have a clear understanding, as obtained by scientific observation and subsequent peer-reviewed research, as to how recovery ‘ought’ to look.
In the simplest terms of all, as long as someone with a restrictive eating disorder continues to restrict, that is to bring about and maintain an active calorie deficit, whatever post hoc rationalisations are applied to that restriction (i.e eating healthy, controlling weight etc) they cannot simultaneously be ‘in recovery’, any more than a heroin addict can be in recovery while he or she is injecting, sniffing, smoking other addictive drugs, or abusing alcohol or other addictive substances and pursuits to fill the void left by the heroin.
Restriction is the most distinctive and standalone symptom of having an active R.E.D. While it is still present, the R.E.D simply CANNOT go into remission.
And so it is follows that we cannot assess what recovery looks like because so many of those in recovery are still in fact restricting; people are identifying issues as being ‘recovery related’ while they are in fact ‘R.E.D related. We are hearing tales of recovery that are in fact tales of harm reduction, a very different beast.
In terms of triage, address the restriction properly before trying to deal with other, less urgent but related issues. If I was admitted to an emergency room bleeding profusely from my femoral artery, while also having three broken fingers, it would be deadly if the attending physicians set the broken bone without attending to the bleeding first.
If we are to be able to identify what recovery looks like, let us at LEAST ensure that it is actually recovery that we are observing. It is not a hard task, after all.
If we want to see people recovering from an R.E.D, then we must first help them overcome the practise of restriction.
What about people who are not restricting but who continue to binge/purge because they like purging? Is it just all about absence or presence of restriction?
I get your point. But I don’t feel this post is about what you are talking about. The original discussion on Twitter wasn’t centered on what is/isn’t recovery as much as how people frame the ill state vs. the recovered state. The notion of “becoming whole” and becoming the “real me.” That’s fine if that’s someone people’s truth, but it is not everyone’s truth. My problem is with universal claims that people make about mutually exclusive states: you cannot be happy unless fully recovered, or you are not your authentic self unless you are fully recovered. “I was a shell of a person when I wasn’t recovered, thus you must be too! You must recover to find the ‘real’ you!”.
Yes, EDs suck. Yes, being plagued by anxieties is crap. But life, and recovery, they are not like the simplistic infomercials you seen on TV: B&W and awful before the product and colorful and awesome after. I am bothered by questions of authenticity and happiness. I’m not arguing you can be very happy and actively restricting; that’s unlikely. But claims about being a shell of a person until you reach full recovery/remission? Or that somehow your relationships and friendships weren’t authentic or whatever? That’s garbage. Things are not binary.
I wish people, including experience practitioners, would not keep repeating that someone with an addiction issue can only recover by total absteinance. This is not what the research supports. According to the largest study ever done by the NIH, about half of people who recover from alcoholism fully abstain and about half who recover sometimes drink. There are some people who do live up to the stereotype of the alcohol who can’t even have one drink with friends or they are off on a drinking binge, but there are many others who don’t always abstain and have found other ways to cope with life. There is not one way to recover from substance abuse issues, just as there is not a one-size fits all ED recovery model.
I agree that recover should not involve restricting, in the sense of denying one’s body adequete fuel, including denying hunger signals. The reality though, in the world we currently inhabit, much of what is called “food” is processed junk loaded with corn syrup and genetically modified wheat. If we want to be healthy in the current world, we are going to have to pay attention to what we eat. This obviously adds another maze to navigate when recovering.
100% with you Sarah. Your comment reminds me of the unrealistic expectations often placed on recovered folks–and the increased scrutiny of their behaviours.
I agree with most of Ruth’s words, but not Ruth’s tone. I think that the general theme of what she has said is totally correct, but I’m not liking the overly authoritative tone.
Also, Tetyana/Andrea/whoever haha, I would say that this article is kind of discussing two different things at once and are two things that should be separated (though I like the discussion). One I think is validating people for their own individual experiences and realities, and the other is what recovery actually is. Because although some people cannot get access to the environment that would facilitate remission, that doesn’t mean that they have another version of recovery or a recovered state. It means that they are not able to reach remission at that time and so are managing their eating disorders in whatever way is available to them at that time – and that’s fine. But it’s not being fully recovered/in remission.
Yeah, I think those are two totally separate conversations. Of course I think how recovery is defined in most research studies, esp. treatment studies, is laughable. BMI 19?! GREAT. NOT A LB MORE PLS. Of course this is a huge problem. I also agree that removing restricting is necessary for recovery.
The discussion I am interested in having, really, or well, I think the original Twitter discussion was about how narratives of recovery are portrayed in the mainstream and in research. Here, I don’t think how we really define recovery matters all that much. If the samples are “tainted” by semi-recovered people, then you’d expect to see less of the whole “becoming whole again” narrative! My problem is with people assuming that just because they had certain experiences it means others will/should as well. I have experienced this so often with people who consider themselves fully recovered (save for Andrea and a few others) and clinicians who’ve recovered from EDs. I’ve had lots of experiences of people disbelieving me–my emotions, my feelings, my reactions to certain symptoms or lack thereof. That’s incredibly frustrating. Irrespective of how we define recovery/remission/illness, I think we should just be more open to others’ experiences. People make these grand claims, you know, like being vegetarian or vegan is always disordered, or that if you are truly recovered you will be overweight (someone wrote this recently in response to my survey). What? How? Why? I don’t know–I think we should just listen to people more. Ask them how they want to be helped, as opposed to second guessing them or applying our experiences and our trajectories onto theirs. Just because being vegetarian was a definitely-ED-related-restricting phase for me doesn’t mean it is for others. I don’t like when people question others’ happiness or contentment or ‘realness’ or whatever. That bothers me deeply; it is presumptuous and patronizing. I can’t help but feel parallels to the discussions I have with people regarding polyamoury. So, so similar to this.
I also don’t think we need to be policing how people self-identify. Do I think we need to change how recovery is viewed in a clinical setting and in research studies? Yeah, of course. But this is a more complex topic given how much of healthcare policy is driven by money (err, like all of it)? And all the problems associated with that. If someone call themselves recovered, who cares what you or I think? And here, too, I can’t help but feel parallels with regard to discussions I’ve had on various sexual orientation/gender identifiers/labels. If someone feels they are recovered and wants to call themselves that, who are you to tell them otherwise? What’s in it for you? What’s in it for people who run recovery blogs? What’s gained from that? Shouldn’t the discussion be — hey, are you happy? what are you goals regarding recovery? how can I help you?
So this, pretty much. Definitely the reason I wanted to write the post was to try to encourage this – almost like a trying to encourage us to ask those questions, questions that are alarmingly all too often missing from discussions about and framings of recovery, everywhere from research to online.
Also, your comments finally didn’t automatically go into spam! Yay! I don’t know why but I’ll take it. I have to often fish them out of there (hence the delay in getting the published) and I can’t figure out what’s going on–must be some plugin or something, but it is weeeird.
Agreed – there are at least 2, if not more, issues at hand here. Though, I’m not sure that we’ll *ever* be able to determine what recovery “actually” is because of how I think about the nature of reality itself, if that makes sense – something like recovery is necessarily mediated by human interpretation, as I understand it. With anything people experience, there’s no way of actually determining what “real” is. You know? But that’s just the philosophical social scientist in me… no unmediated access to reality.
I see where you’re coming from, definitely. I especially agree that BMI is FAR from enough in judging recovery – in general, I don’t like BMI as a measure and think it tells us very little about someone’s state of wellness or illness. I ascribe to a perspective where you really can’t tell much about someone based on their size. I think this is especially important as people in larger bodies can, of course, also have serious restrictive eating disorders. What I find, when I look at treatment outcome studies and think about treatment criteria for discharge, I see this overly narrow zone of “normal body size” being etched where there are subtle messages that people in recovery should gain weight, but not too much weight. I think this is incredibly problematic and sends the wrong message that recovery is tied up primarily in body size, which it isn’t.
The post isn’t really about that, though. Nowhere in the post do I talk about medical remission criteria- I’ve done another series of posts where I talk about recovery (part one here: https://scienceofeds.org/2014/08/04/unpacking-eating-disorder-recovery-part-1-the-recovery-model/ and there are 5 parts) – in that series I go into more detail about the definition of recovery. I’m working with a number of professionals in the field and other researchers right now on a consensus definition of recovery for the field, because there’s such inconsistency in how it is measured, clinically and for research. The messages that we give to people in recovery about what to expect and what recovery is, and I think that’s unfair and confusing.
I don’t know, however, that it’s really fair to compare eating disorder recovery to substance use recovery or even cancer recovery, because eating disorders aren’t substance misuse or solely physical illnesses. The issue is that people in general in our society engage in disordered practices all of the time, and this makes it so that eating disorder recovery can also feel extremely counter-cultural; especially in a society where most people are being peddled anti-obesity messages and, as I mentioned earlier, there are a number of contradictory messages being given to those in recovery about what their bodies should be. This is a societal issue, not an individual one. Of course, you could argue that people have complicated relationships with alcohol, too, making the allegory easier, but I still think there’s a difference – physiologically, people have to eat. Emotionally and culturally, they have relationships to what they eat. These aren’t blanket relationships we can externally dictate.
What recovery means to people or what it feels like also changes over time, which makes establishing cut and dry criteria really challenging, even though it would be helpful for research and clinical purposes. These changes are also tied to life changes, which are inevitable – and this is really at the heart of what I was trying to get at in the post: that life is complicated, and recovery is too. I’m uncomfortable with the use of the term remission because it medicalizes something that involves much more than just medical aspects. For discharge from treatment, maybe, but in terms of the communities that exist around recovery, I think there’s a broader discussion to be had.
RE your edit – it is not a case of ‘who cares’ – it is a case of getting our definitions right. As a scientist, and a researcher, you are aware of the need for accuracy.
In terms of shortening someone’s life span, it is incumbent upon a medical practitioner to advise the person of ongoing risks associated with the patients lifestyle. That gives a basis for informed consent.
At present we have people who have been told that they are recovered, a state that has been assessed by their BMI and bodyweight, while the assessment itself has failed to encompass or acknowledge a still active state of restriction.
As mentioned, many are assessing the ‘recovered state’ while not being recovered in a clinical sense. So they are describing a state of being that is not possible for them at present.
It would be helpful to see research that acknowledges this, with reference to relevant research, instead of the misunderstanding continuing to be perpetuated.
Firstly, I don’t consider myself a scientist or a researcher. I used to do research, but I don’t anymore.
Secondly, yes, I do agree with what you are saying regarding definition of recovery in a medical sense (i.e., minimal weight restoration, menses, etc.). There’s a difference between coming up with a consensus for what qualifies as recovery for research and clinical purposes, and with how people EXPERIENCE recovery and illness, as well as their trajectory from one state to another.
I feel like this discussion is completely not what the original post is about.
“There’s a difference between coming up with a consensus for what qualifies as recovery for research and clinical purposes, and with how people EXPERIENCE recovery and illness, as well as their trajectory from one state to another.” YES this, exactly.
This has been a great discussion. Thank you both!
Perhaps a middle ground should be pursued. 1. Identify what is currently called recovery as actually being “harm reduction” in the first instance: such as IP treatment which seeks to stabilise the person in a medical sense, and to reduce the immediate risk of death.
2. Identify recovery as being something other than mere harm reduction, acknowledging that reaching remission means setting goals beyond minimal weight increase, attaining a state of medical stability, and an increase in calories.
3. Inform the patient that what he or she is doing comes into either category, and help them come to an awareness of the likely outcomes of both courses.
While it may seem overly pedantic to make this distinction, it is necessary if people wish to move beyond a constant, years long struggle with an active R.E.D. – a struggle many are stuck in because they do not realise that ongoing restriction is sabotaging their efforts. Rather than asking “what are you re-covering?”, ask “Are you actually in recovery, or at present are you pursuing harm reduction?” Again, an informed choice must be offered when accepting treatment protocols.
There is, in fact, a ‘one size fits all’ approach to recovery, although different means of doing so, and that is to stop restricting, and learn how to stay in a non-restricting state.
Re it not being ‘fair’ to compare remission from an R.E.D with remission from cancer, this is a matter of accurate terminology than ‘arbitrarily determined fairness.’ The medical definition of remission is disappearance of the signs and symptoms of cancer or other disease. Because the primary sign of an R.E.D is restriction, the FIRST sign one would expect to have disappeared before the state of remission is claimed is remission. Restriction is as deadly to the sufferer of an R.E.D as is metastatic cancer to the sufferer of a lifethreatening cancer. It is the primary and most easily recognised symptom of the whole spectrum of R.E.Ds.
I really do get where you’re coming from, but I’m afraid I’ll never agree that there’s a one size fit’s all for recovery – not even as you describe it, because there’s a subjective, qualitative aspect to the changes wrought by recovery. We aren’t a set of inputs and outputs – there is emotion and affect there, and it’s always contextualized by experiences of marginalization, privilege, and access. Feeling recovery simply can’t feel the same for everyone, because everyone is different – and asking what are you re-covering is tied to asking what kind of life do you live, have you lived, and will you live in the future.
By “fair” I mean accurate, actually. I think it is inaccurate (scientifically and logically) to compare eating disorder recovery to cancer remission. While obviously there are environmental factors with cancer as well, the interlinkages between societal expectations for bodies are different with EDs and cancer, and that contextualizes experiences of illness and of recovery. Sure, both restriction and cancer are deadly, but an ED can’t be directly allegorical to cancer.
Perhaps I needed to be more specific in my terminology. In order to achieve a remission from an eating disorder characterised by, and driven by (with regard to the brain’s response to NP-Y), restrictive behaviours that create and maintain (and gradually increase) a calorie deficit, it is necessary to achieve a cessation of restrictive behaviours, which in simple terms can relate to the food intake, but as you point out, broaden out into a complex web of interactions and responses that are all nuanced and affected by innumerable factors.
The factors affecting each individual who suffers with an R.E.D will not be precisely the same as those affecting another.
However, in every case there is a calorie deficit, and a drive to restrict further in some way. And thus, regardless of the individual personality, life history, gender, age or cultural perceptions of each individual, a primary and crucial facet of treatment will include addressing the restriction. Perhaps a more useful analogy might be in regard to how one approaches the treatment of a person who is suffering from extreme malnutrition, or starvation. While calorie intake, and foods of choice and rate of refeeding will have to be calibrated according to individual needs, the only way to recover from being starved is to be refed. There will of course be psychological and emotional issues that will come to the fore, as well as challenges presented by each individual’s specific situation, but they will all need to have their calorie deficit reversed, and to be supported medically and psychologically (and in practical logistical terms also) if they are to recover from that state. In that sense, there is a one-size-fits-all aspect to both conditions. In neither case would it be practiceable or logical to continue or prolong any restrictive behaviours.
Again, anyone wanting to recover (as in achieve a full remission) from an R.E.D must be helped to discontinue the practise of restriction.
Ruth, with all due respect, how is this relevant to the discussion? Andrea, in the post, is critiquing the narrative that recovery means “becoming whole.” The discussion on Twitter pertained to framing recovery as becoming “real” or “whole”/”authentic” and as experiences during the ill state as being “inauthentic.” While this may be true for some, and that’s 100% valid, the Twitter discussion and this post, as far as I see it, is about broadening the discussion to include the fact that “becoming whole again” isn’t everyone’s experience with recovery. I don’t see how clinical or research definitions of recovery pertain to this discussion, unless you are implying that yes, everyone does indeed only become “whole” again once they reach recovery as you define it.
Yes, fair enough. I get that.
oops, the first sign one would expect to have disappeared is ‘restriction” – my bad.
Wow, is this fascinating. Ruth, I am with you. I am processing the push back as I do not have lived experience and I want to consider that view. I do know I do not want for my daughter so much of what I see in terms of people living lives in harm reduction mode. Also, I have now forgotten what the blog post is about 😉
One, I’m confused: what push back? Pushback to what?
Two, of course no one wants their kid/partner/sibling/friend to not be fully recovered–how is that relevant to the discussion?
As a parent supporting a daughter in recovery, it is crucial that you see the difference between recovery to remission and harm reduction. Many of the people that I have known who have died, or who are continuing to deteriorate physically, believed themselves to be actively involved in recovery, but were still restricting – although they had made some changes to calorie intake and exercise.
Because there has always been immense pressure for any weight gain to be suppressed below a certain, arbitrarily set point, it is common to see someone recovering to that point, and then applying restrictive behaviours so as to not move beyond that point. That in itself can be deadly – the damage done by restriction is cumulative if remission is never reached, and major organs such as heart, liver and kidneys can fail at a much higher weight than the lowest weight one might have reached. Many of the recovery narratives that can be found online involve the person applying restriction once they hit a preferred weight and size, and they are at risk because of that. If your daughter sees and follows those examples, then she too will be at risk.
This is relevant to the topic of the original blog post, because it mentions the ‘becoming whole’ paradigm, and identifies this as being problematic and as needing to be moved away from. While I am not going to enter a debate on subjective experiences of such a phenomenon, I will point out the clinical reality that someone who restricts from an early age without entering remission will fail to complete some parts of the physical maturation process that requires a certain weight point (which will be individual) to be reached and maintained. In particular, critical stages of myelination, the laying down of essential fatty tissue around the nerve sheaths, will not be completed while the person is in a cumulative calorie deficit. We tend to think of R.E.Ds in relation to the subcutaneous and visceral fat levels, but of far more concern are those that are invisible (to the naked eye).
Until the myelin is replenished, or laid down for the first time, it will be impossible for the brain to become truly adult. This is one reason that psychotherapeutic treatment is often delayed until a person reaches a certain weight, or has refed at a calorie surplus for a certain period of time. Until those areas are myelinated and the brain is being properly fed, therapy will not prove effective.
In this sense, a person can be ‘made whole’ while in recovery to remission, in that they will be enabled to reach full maturity in a physical sense as well as in a psychological sense. However, for as long as they continue in a calorie deficit, this will not be possible.
For your daughter to have the best chance at becoming whole, in terms of becoming a fully mature adult, she needs to follow a path of recovery to remission, rather than practising harm reduction, which while keeping her alive longer, will not provide a high enough calorie intake to allow those crucial stages of development to take place.
The relevance of this line of discussion is a case in point when it comes to you as a parent seeing a sharp difference between harm reduction and recovery to remission. Such knowledge can, and does, save lives.
Firstly, while I appreciate your comments, Ruth, please tone down the patronizing nature of your comments or I will stop approving them. It is getting on mine and others’ nerves. I will not approve further comments that are as patronizing as this one.
Your comments are not on topic, and it honestly feels like you just want to rant about the same thing over and over again. I’ve stated several times why I think your comments are irrelevant to the discussion in this post. I don’t buy your arguments for why it is relevant. You stated them, but I think they are unconvincing.
Secondly, I’d be interested to see all this research on myelin you speak of. DTI studies are very prone to effects of acute dehydration and malnutrition that probably don’t actually reflect WM changes. You make a lot of claims that I suspect are not as supported by evidence as you think they are. Like: “Until the myelin is replenished, or laid down for the first time, it will be impossible for the brain to become truly adult” or: “In this sense, a person can be ‘made whole’ while in recovery to remission, in that they will be enabled to reach full maturity in a physical sense as well as in a psychological sense. However, for as long as they continue in a calorie deficit, this will not be possible.” Yeah… so athletes who accidentally enter a calorie deficit and lose their menses, or cancer patients who lose appetite because of chemotherapy stop being adults? Please stop.
Ruth–I have a daughter in a strong, independent recovery at 21. I am a very strong proponent of lots of fat in the diet and a high enough weight–a 10% overshoot for sure. I would love to connect with you. jdeniseouellette at gmail dot com
@Tetyana, It is not my intent to be patronising. I apologise for my unintended offence. I also understand that you personally do not find my input relevant, and intended this reply for J D Ouellette, who did. Again, if I have offended by responding to her reply to me, I apologise.
Re myelin levels, here are a couple of articles that might interest you: http://bjp.rcpsych.org/content/199/1/5 : http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4644248/ : http://www.livescience.com/8293-brain-shrinkage-anorexia-reversible.html
If this interests you, tt is also worth reading up on hippocampal atrophy – a common issue in anorexia and other forms of R.E.D.
@JD Ouellette – I also ‘recovered’ when I was 20. It was not until I was 52 that I was diagnosed as having had a long term chronic R.E.D, one that switched modalities, and which moved to an acute form whenever I faced significant life challenges. I have been pursuing full remission for the past three years, and am completely restriction free for the first time in my life since I was 9 years old.
I have emailed you. Thanks for reaching out.
I do agree, though I also agree with Tetyana’s reply below that this isn’t really the point of the post, which is more about people’s feeling able to access the kinds of support that are involved in attaining recovery, as well as the difficulty of narrowing down a one-size-fits-all way of being recovered, which is simply not feasible.
It’s a fair point about definition, a problem that has persisted in the field and that we’re trying to rectify. I also see where you’re coming from around harm reduction, and I agree that we should look to more behavioural criteria because BMI fails to recognize, well, a lot. I’m not sure how possible accuracy is going to be, but I’m part of a large group attempting to wrap our heads around what is a very complex psychological, physiological, social, emotional, political, economic, and more situation.
For me, as time has gone on, I have grown to see “recovery” in a much broader perspective. It isn’t just about dealing with anxiety regarding food, weight, body image, exercise and so forth, but dealing with underlying patterns. A “holistic” approach perhaps. If I am recovering and my eating or obsessional thinking is getting better in that regards, but then just shifts to something else, then I wouldn’t really view that as “recovered”. I have also started to question the idea of something just being within ones personality to a point. I can be, but it also comes down to the actions we have practiced everyday for a life time or however long.
Jenni Schaefer’s second book comes to mind also, in that she talked about being depressed after she recovered from her ED, I believe stating something like she kind of wondered why she recovered from her ED if she was going to feel so crappy afterwards anyways. That points to one thing for me though: Within her mind she had healthy behaviors and was in the least able to handle the thoughts as they came when it came to food. So she was “recovered” but other aspects in her life were still needing to be worked on so to speak. As I would think everyone in life does in a way.
So I think in a sense while perhaps one can “recover” from an ED, that many other aspects, or underlying patterns may need to be worked on. One thing that stuck out to me from Mark Freeman’s YouTube videos in one particular video was him stating the fact that we have to deal with the beliefs and underlying patterns of actions, otherwise we may always feel that pull to go back. To have a more solid “recovery” I assume is generally more preferable than one, walking on egg shells, waiting for the shoe to drop. Having a “healthy” enough lifestyle to where overall, if those underlying patterns popped up, that it would become much more obvious much sooner and as such, but caught before it goes down the “mental illness” road again.
I also feel a bit sad when we have that whole thing of people feeling “satisfied” with what they may call recovery, when it seems to imply they are not totally free. It seems more like a sad sigh of “Oh well this is as good as it gets, I can never get any better” and just trying to manage. Not saying that is what it actually is, but that is often how it comes off. To me the outward actions/ behaviors are not as important as the internal drive, happiness, so it really does depend.
Hi Kianni; thanks for commenting. I’m glad your comments now came through 🙂 In addition to what I said on Facebook, I think it’s true, it feels sad to think about feeling satisfied with what we might externally see as less than fully recovered. I think the knot comes in when people are actually very happy in their lives and the eating disorder is not at all on their agenda, but they might act differently around food than other people. Not even necessarily restriction, but where I get caught up is around things like following a meal plan. Up to a certain point in recovery, one is expected to follow one… but if you keep following one long into recovery, some might begin to wonder if you’re “truly” free of the eating disorder. Also thinking about how different a meal plan usually is from normal eating if you define normal eating as eating that people in general do, which one might argue is more along the “intuitive” lines. And yet, if many with a past of eating disorders try to “intuitively” eat, they might inadvertently restrict because that’s a part of how they ate for so long. You know? I just find it to be so complex and I think the experience is qualitatively different for each and every person. Also, I fully agree with you around perspectives on recovery changing over time – mine certainly have, too. There was a time when I assumed that recovery *was* a perfect place… and while I needed that, what I thought that looked like didn’t end up being close to reality as I live it now, though I’d say the life I carved out ended up being better for me. Life is weird.
Well said!
“Self-esteem is just like motivation–an invented barrier that gets in the way of recovery. Like most people, I chased high self-esteem but only ever seemed to have low self-esteem, not realizing that believing in high self-esteem caused low self-esteem. Recovery has shown me that self-esteem is irrelevant. What matters are healthy actions and doing them regardless of what your brain thinks or feels.”
I’m curious where that quote is from? I feel like I’m missing something.
It probably occurred while trying to make the comment go through, it wasn’t meant to be a comment on here, just posting a quote from somewhere else. =P
I realize I didn’t answer the question though..lol. I can’t remember where exactly, but I believe it was from either one of Mark Freeman’s posts on his Everybody has a Brain Tumblr or one of his videos on YouTube. For some reason I didn’t put down the original source despite putting it in quotes. =/ Now I am looking for it, lol.
The original post is, as you say, “about how experiences of illness and recovery are framed.”
The relevance of my input is to highlight fact that many people who are told that they are recovering, or have recovered, or understand themselves to be recovered, are in fact still dealing with an active eating disorder, because restriction is still being applied.
This makes their experiences those of a person who is still ill, for as long as that restriction goes on uninterrupted.
You are seeking to understand the way that illness and recovery are framed. For many, their illness is framed as ‘recovery’, even though this cannot be possible – as per my earlier posts.
In order to understand the framing of both states, you need to have subjects who fit in to either category – “ill” and “recovering or recovered” (perhaps three, if you split that last category into two obvious groupings).
At present, because states of active restriction are still viewed as states of recovery, your data samples are tainted. Much of the data about ‘recovery’ comes from people who are continuing to restrict, the complete antithesis of recovery.
Right, but to be honest, I still don’t see the relevance when it comes to narratives on “wholeness”/”realness” and “authenticity”. I don’t think that the issue discussed in this post would be very affected by how precisely we define recovery. In fact, I would argue, that “tainting” it by people who are actually just practicing harm reduction would decrease the likelihood of seeing the “becoming whole again” narrative dominate the literature.
I think the issue with the idea that the data is somehow “tainted” by people (I hate the word subjects- people are people, not numbers or mice or something.. so if anything, participants…) who are restricting is that we actually don’t have any objective measures of what constitutes active restriction. Hear me out, because I know that sounds silly, but restriction is, to a certain extent, relative. Thinking about my experience, there were times when I was eating what might be seen as a “normal” amount and yet it was restrictive eating. So the practical impossibility of actually assessing that comes into play. I also agree with Tetyana in that if anything that would just swing the data in the opposite direction of “becoming whole”- unless we’re starting to question the whole idea that people in the sample were truthful about their experiences and how they described them?
The tainting would occur when a subject was classified as being ‘in recovery, or recovered’ when she/he was actually in a state of active restriction.
Yes, I understand that. I just don’t think it would affect the research findings. In fact, if anything, I think it’d skew it in the opposite direction of what is reported–away from the narrative of “becoming whole again.”
And I specifically mean these research findings. I completely agree this problems skews a lot of other data in problematic ways.
Right… I do think it’s important to acknowledge, but I also think we’re kidding ourselves if we think there’s any perfect, “untainted” data set where people are concerned. It’s unrealistic and, frankly, impossible.
We’ll increased internal validity, but decrease external validity, no?
Anyway, this is why I studied C. elegans.
I can’t read the full-text, but I wonder… To what extent do you think the idea of “becoming whole” through recovery has been taken for granted by the researchers, and has therefore been used to frame the respondents’ ideas? Is it is clearly stated in their responses – or it that impossible to determine because the researchers have already selected and sifted them in a “becoming whole” sort of a direction?
Personally, the times I have felt most whole have been when I have AN (albeit mostly only in the early stages). That clearly is no excuse not to recover – both because there are things in life that are more important than feeling whole, and because continuing with AN isn’t compatible with a healthy life. But it is a factor that can’t neatly be placed in an equation where recovery equals wholeness. And, for some people, as you pointed out – it’s important to consider what they are recovering from, and what they might have been escaping in the first place. I completely agree that an ED is only one factor is a life that is always going to be messy in some way. ED recovery is similar to recovery from a physical illness – you enjoy better health and life prospects, but you don’t turn into a whole new person. Although perhaps it can sometimes appear that way, given the most common age at recovery – early 20s (??) – where big changes would have been happening anyway?
It’s a good question, Shiran. This is one of those questions I don’t have an answer to but that plagues me about research in general; I can’t help but wonder about confirmation bias, or the idea that the researchers are finding what they’re looking for. It’s not even really a judgment on the researchers so much as a pragmatic perspective on the fact that social science research is never free from expectancy on the part of researchers or participants – so not only that the researchers might find what they’re looking for, but that the participants also may have said what they thought the researchers wanted to hear. It’s complicated and challenging to talk about without sounding like you’re blaming researchers/participants, which isn’t the case, it’s just how it is.
Subjectivity and experience is a complicated thing, and it’s interesting to hear that you have at times felt most whole when you have AN. I think another wrinkle is that, for people who’ve had eating disorders for a long time, that’s what life is, right? And to a certain extent you have to carry on as much as you can, because maybe you aren’t super focused on recovery for whatever reason (need to work, can’t get good treatment, are facing other struggles, etc.). And yeah, like you said, there are so many other changes going on during recovery (I’d argue at any life stage, life is rarely static) that it becomes challenging to parse out the ED recovery stuff from the changing through life stuff. This is, I think, why recovery and how it is talked about and framed is so fascinating to me…
Have you read: Unbearable Weight, Unbearable Witness: The (Im)possibility of Witnessing Eating Disorders in Cyberspace by Kristen N. Gay (full-text online)? It talks about the silencing of people who are unable to achieve (full) recovery – and the promotion of a recovery narrative that expressly assigns agency to others – i.e. that de-legitimises the sufferer’s own efforts. Which all seems a bit strange, and in some ways similar to the “becoming whole” narrative.
The name rings a bell but I don’t remember specifics- I’ll have another look at it, sounds interesting.
This is a great point, Shiran. I do think that because the conventional recovery narrative (which I don’t actually think is a bad one) revolves around the idea of ‘becoming whole’, folks in recovery tend to frame their recovery that way. I mean, we’re not recovering in a vacuum — just look at all the recovery biographies that tell the story of how someone ‘became whole’ again, which is really to say that they moved on with a life in which an ED was no longer central. I’m concerned that it’s pretty easy to hide behind the claim that one is ‘whole’, or no longer acting in ED-driven compulsive ways, when in fact they still are. Not to say any research participants or other recoverers are being intentionally deceptive, but because of the nature of ED (sneaky, quick to adapt to new circumstances, chronic) folks might be prone to claim more progress than they’ve actually experienced, using the ‘wholeness’ vocabulary, just to get out from under the controlling treatment environment. I guess this matters to me because I want to see healing, not only the language of healing.
I realize that I’m doing the annoying thing here, assuming that I understand other recoverers’ experiences enough to question their claims. But I have close experience with a whole lot of ED sufferers, and I have often witnessed people saying that their lives are no longer about ED, that they are free/whole/whatever… when they have simultaneously said things like “weighing more than my sister would be unthinkable” (actual quote) or they are still afraid of certain standard social-setting foods, like cake. But it is so easy to deflect from these things when we have the language of ‘wholeness’ at our disposal.
I confess that I didn’t read the blog post or all the comments, because I’m in a trigger-y place right now! So, I’m not sure what my point is exactly. Maybe that we need to be aware, in research/clinical practice/community, of how the language of recovery can obscure the more objective measures (I mean, could we not say that fear of cake is an objective measure of disordered thinking?). Like, we might, by providing this conceptual goal of ‘wholeness’, be prompting folks to too readily gloss over the complexity and arduousness and seeming endlessness of recovery. Not that we want to stay in that messy in-process place forever, but we’re unlikely to graduate from it after a few months (or even years) in treatment. Facility with the language of recovery, however, *can* be a way to deflect attention from what is actually going on with us.
Said the tl;dr on twitter, but for anyone who didn’t see (lulz), Merav Shohet’s Narrating Anorexia (Ethos 35:3) has another take on the authenticity/whoelness = recovery idea and argues that people who identify as fully recovered have narratives of coherence and closure, but people in “struggling recovery” present narratives of “authentic experience” that “often involve musing, inquiry, contradiction, dispute, and revision and present experience as an “enigmatic life episode”. I think ‘authentic’ probably means different things to different people, because she’s using a typology of coherence v authenticity borrowed from Elinor Ochs, but authenticity in this framing necessitates *ambivalence* and not closure.
The other big confounding factor I think could be comorbidity that complicates the notion of what an ED recovery could look like, especially with so-called ‘chronic’ conditions like personality disorders.
It’s interesting because what I remember about the Shohet article was that it seemed like full recovery was seen as wholly and always preferable to the struggling genre? It was a while ago that I read it, though, so I could be misremembering. Anyway, I agree that authenticity likely varies person to person… also wondering about relationship (or lack thereof?) between authenticity and legitimacy and how this might relate to whether people were diagnosed, with what disorder, and what kinds of eating disorders they were diagnosed with. I think about this in relation to my own research, where people have had trouble recognized themselves as having had more “legitimate” EDs when diagnosed and when others in their lives recognized their disorders. Anyway, interesting.
Oh she definitely was quite [*very*] skeptical about the ‘struggling’ genre and saw it as trapping patients in a cycle of relapse…
“in the case of the Full Recovery genre, the reframing is complete, depicting a break from a former relatively incapacitated self and a transformation to a self more capable of handling life’s contingencies. Alternatively, in the case of the SR genre, past, present, and imagined future selves are narrated as continuous and conflicted versions of an ambivalent person who is sometimes cast as an agent of her life, while other times remaining an experiencing patient.”
I don’t know how much her conclusions are informed by the sample of patients she interviewed, and I also disagree with how binary & mutually exclusive the narrative closure / authenticity genres seem to be, but the main useful thing for me is the idea of authenticity as process rather than state.
as for legitimacy – they both deal with issues of recognition & I’d hypothesize that it’s a pre-requisite for being able to feel a sense of authenticity? but there’s a lot of confounding factors in there, as you say. I can see the opposite being the case – external validation that one’s ED is legitimate creating a less cohesive sense of self because the ED is “split off” from the rest of one’s experience.
Oh wow, Jenkins and Ogden 2012! I remember reading the article shortly after it was published, and at that time in my life, I found it affirming and inspiring of my (initial) recovery, which was young in 2012. Then in 2015, reading it retrospectively, things about it irked me so much. You bring up the omission of privilege from their discussion and many others’ discussions of recovery: in my essay about my lesbianism and the homophobia+misogyny I encounter in response to it and the roles these have played in my eating disorder, I mention this article because the authors refer to “finding a boyfriend” as a factor in women’s recovering from AN. (as I say there: How hard would it have been to use an inclusive term or to include a caveat that “finding a boyfriend”, which appears twice in [Jenkins and Ogden 2012], could be generalizable to finding a significant other of any gender?) a statement like that is immediately alienating as well as precluding of the realities of eating-disordered lesbians/bi women/queer women.
I love your framing your post in terms of wholeness or the lack thereof. As a former user of eating-disorders services and as a former psychiatric patient, I’ve frequently encountered the belief that eating-disordered women and girls/psychiatric-patient women and girls are essentially passive, naive: empty or partially empty vessels ready to receive the wisdom of recovery and/or the treating practitioners. I wouldn’t trade being recovered for going back to engaging in an eating disorder; I do believe that I’m more perceptive and stable than I was then. But I wonder how much the conceptions of “unrecovered” women and girls reflects these other conceptions of receptive, vessel-like women and girls and women’s and girls’ “not knowing what’s best for us”, of which there is plenty inside and outside healthcare contexts. Ah, I’m losing my train of thought. The idea that I’m “whole” now but was ever “incomplete” and/or “broken” to begin with bristles me when there’s so much precedent for conceiving of women in general as incomplete/broken, lesbians in general as incomplete/broken, etc. It’s like incompleteness/brokenness represents related ideas about possession and complexity of interiority and possession of autonomy.