Treating a patient with an eating disorder can often feel like walking on eggshells; it is easy to say or do the wrong thing. I’ve covered this topic in my previous posts. In my first post, I wrote about negative attitudes that health care providers often have with regard to eating disorder patients and in my second post, I covered some ways in which caring clinicians that do work with ED patients may – usually inadvertently – negatively impact treatment, often by impairing the physician-patient/caregiver relationship.
But let’s forget about clinicians for a second, what if the treatment environment itself is damaging? Could treatment itself do more harm than good?
That’s the question that Walter Vandereycken explored in this commentary article. (This interesting paper was brought to my attention by a reader – you know who you are, so thanks!)
And just to be really clear Vandereycken doesn’t mean contagious in the infectious-disease kind of way. Coming into contact with someone who has an eating disorder is not going to put you in danger of getting an eating disorder yourself.
Instead, what Vandereycken means by the use of the word “contagious” is “peer-contagion”, a phenomena that has been well documented in suicidal behaviour and self-injury. Think about copycat suicides for example: it is unlikely that a healthy individual without a history of suicidal thoughts is going to be prompted to commit suicide, but someone who is at high risk, well, that may just be enough to push them to try once more.
The notion of “peer-contagion” is meant to describe the “social learning process of imitation, identification and competition”, leading Vandereycken to suggest that “we should question the possible dangers or unwanted side-effects in treating patients together within a common therapeutic setting.”
Beside anecdotal information and opinions of professionals in the field, three types of studies about patients’ experiences in a therapeutic setting have been found: ethnographic reports by participant observers, qualitative investigations using mainly retrospective interviews and larger scale written surveys collecting patients’ opinions in a standardized manner.
INPATIENT TREATMENT SUBCULTURE
Vandereycken recounts interesting historical cases of “a kind of pseudo-contagiousness” of eating disorder symptoms that has occurred in otherwise non-ED residential settings (I highly recommend reading the original article just for this part). But it seems that few have taken notice of the “‘dangers’ of treating patients together”.
In 2004, the principle of the British national Center for Eating Disorders, Dean Jade, made the following statement regarding inpatient treatment:
As any inpatient will tell you, a specialist unit is the best place to learn how to be really, really good at anorexia. They also breed their own subculture. Some patients have reported bullying and intimidation by the hard-core cases. If they eat anything at all, they’re called fat cows’ (Rice, 2004).
Vandereycken refers to ‘a most interesting blog’ post by an ‘astute blogger called ‘greythinking‘ that lists six different ways in which inpatient treatment for eating disorders can do more harm than good:
- exposure to the sickest of the sick
- picking up other eating disorder symptoms
- competition among patients
- unhealthy modelling
- negative attitude towards treatment and
- no life outside of the eating disorder
‘As for ‘‘breed[ing] their own subculture’’- . . . well, I’ve always said that there is an eating disorder world. You make friends in treatment. After discharge, you keep up and talk about how everyone is doing . . . is so-and-so back in treatment? I heard so-and-so is doing really poorly. Because you’ve given up school or work to go into treatment, the most interesting things going on in your life are your therapy and nutrition appointments. Everyone talks to each other about their appointments… You continue doing the same arts and crafts that you were doing inpatient. Everyone’s lives are still consumed by the eating disorder …
PATIENTS’ EXPERIENCES
What do the patients think about all of this and does anyone even know or care? In large part, the answer is, well, it appears that no, most people don’t care. At the very least, it is rarely taken into consideration in studies evaluating treatment services.
And that’s the crux of the problem. To patients, what Vandereycken is writing about is obvious. DUH. But the point is, this may not be immediately obvious to treatment providers (or the size of the problem, anyway) nor is it necessarily obvious to well-meaning parents and caregivers, who think that inpatient or residential treatment is all or mostly all good.
Vandereycken summarizes the few studies that asked patients about their experiences. In all the studies mentioned in this paper, there is a common theme: positive features include support and understanding, and negative components center around competition.
- de la Rie et al (2006) found that while most patients considered specialized care to be helpful, some noted rivalry with other patients as being unhelpful
- Tierney (2008), interviewing adolescents in the UK, found that patients had difficulties with the inherently competitive nature of anorexia, the competition to be the sickest (eating the least amount or weighing the least) and the arrival of a new patient elicited the desire – a sort of nostalgia – to go back to their pre-treatment eating disorder state. There was also a fear that the new patient would judge them harshly, seeing the amount they were now eating as part of treatment (“think they were greedy for eating full meals”.)
- Colton & Pistrang (2004) also found that negative experiences in treatment included the propensity toward comparison and competition, as well as picking up bad habits (such as self-injury)
THE CONS OF GROUP TREATMENT
Is there a solution? Separating patients based on their progression toward recovery might initially sound like a good idea, but it would likely exacerbate the negative components of group treatment for those who are very sick, limiting their exposure to healthier role models.
What can be done? I am not sure. Clearly, group therapy has benefits – for me, personally, support groups were very important during my treatment, considerably more beneficial than outpatient treatment. But the caveat is that the groups I went to were voluntary. Everyone wanted to be there. And, well, we all went home after (we weren’t together 24/7). Moreover, the dynamic was never at a standstill – much depended on the facilitator and the people present. I think that prevented negative group dynamics from developing.
I got the sense of belonging, support, mutual understanding, and acceptance but almost none of the competitive and comparative aspects. Yes, individuals lost weight and it was sometimes obvious, but their presence there, being voluntary, highlighted the misery and unhappiness of their present state. It was a potent reminder of what you can lose if you don’t keep pushing yourself to try and get better. And being around individuals who were often very far along in recovery, or those who just had a few food issues, was a positive reinforcement. Unless you talked to individuals after group, there was no way of knowing how much they weigh, how much they’ve lost, etc.. Mention of numbers and specific foods were forbidden in group.
And, of course, there was none of this:
Australian researcher Warin (2005) remarked that patients laughed ‘about how they had tricked the staff through tactics [such as] hiding food in the ceiling panels, draining apple juice into bed pans that were taken away and disposed of by the nurses, and spreading butter between newspaper sheets or duvet covers’ (p. 107).
These tricks, just like the concealment of anorexic practices and pseudo-compliance with treatment, can be related to the need to create status and power in situations where they feel constrained or out of control. It may also express their need to retain an anorexic identity.
But how many cities have provide an opportunity to go to weekly (and if you want, daily) voluntary support groups? And with eating disorders, you cannot simply rely on the patients’ desire to get better and that is even when they are aware of the problem (because often, that realization comes during recovery).
So then what?
TREATMENT CULTURE AND SUBCULTURE
Vandereycken notes others’ criticisms and critiques of inpatient and residential eating disorder treatments:
Warin (2005) noticed that many inpatient programs ‘effectively reproduced and supported the many isolating practices that people with anorexia use to negate relatedness’ (p. 108).
The one thing that is missing in Warin’s analysis (as Vandereycken quoted it, I didn’t go to the original source) is the point that highly structured treatment programs are often not challenging in the right ways for patients with anorexia nervosa. The emphasis on structure, weight gain goals, numbers, controlled portion sizes, a day split into 30 minute segments, or something, may not do much to challenge the rigid anorexic mindset.
Indeed, one may even flourish in this very unrealistic setting. Stability and structure may be good, particularly for those with bingeing and purging behaviours, but the emphasis on numbers, rules and structure (albeit with the goal of “weight gain” versus “weight loss”) may actually predispose patients to relapse following discharge. It is treating rigidity with more rigidity, just reversing direction of weight changes (and weight is important, but, so is being able to let go of the rigidity and the ED mindset).
Vogler (1993) pointed out that many programs (like the 12-step program) are grounded in the notion of admitting, or assuming, “an eating-disordered” identity. It is I am anorexic versus I have anorexia nervosa. (Note, I use “anorexic/bulimic” in titles to keep it short.) Vogler views this as a form of self-stigmatization “patients can only get better if they first admit to being ‘sick’ and accept the personal weakness supposedly linked to their eating disorder“.
Vandereycken concludes with this:
[The] therapeutic practices both reflect and incorporate the process of social construction of an eating disorder (Hepworth, 1999). We should be aware of the various ways in which ‘the eating disordered patient’ is constituted both in terms of the patients’ self-constructions and of the constructions by healthcare workers, including the tendency of stereotyping in negative portrayals of patients as being ‘difficult, uncooperative, manipulative, untrustworthy’, etc. (Malson, Finn, Treasure, Clarke, & Anderson, 2004).
Closely linked to this issue is the danger of authoritative containment of patients within a rather coercive atmosphere of a hospital unit. The more a treatment is experienced as controlling and disciplining, with nurses mainly in a surveillance role, the higher the risk of a struggle for control, leading to rebellion in patients (Ramjan, 2004; Ryan, Malson, Clarke, Anderson, & Kohn, 2006). The patients’ perception of the therapeutic alliance is a crucial factor in the process of commitment to an inpatient treatment program (Gallop, Kennedy, & Stern, 1994; Wright, 2010).
That last point is one that I, and others, have mentioned time and time again: the patient-physician relationship is of utmost importance in the recovery process.
Also, check out Vandereycken’s article on the Eating Disorders Review webpage called “How ‘Contagious’ Can Eating Disorders Be in the Eyes of the Patients?’
Readers, what negative environments have you experienced in treatment with regard to the ‘subculture’ and the byproduct of being surrounded by other ED patients? How do you think this problem can be ameliorated while retaining some of the positive aspects of group treatment?
References
Vandereycken, W. (2011). Can eating disorders become ‘contagious’ in group therapy and specialized inpatient care? European Eating Disorders Review: The Journal of the Eating Disorders Association, 19 (4), 289-95 PMID: 21394837
Yes yes yes yes yes yes yes.
Absolutely yes. I think this topic is very important; at once dangerous, because i worry it will provide insurance companies that are not doing their job with an excuse to keep that up, but the issue is valid and in my opinion SO prevalent. Less so in chronic patients (or less so in many chronic patients who have been so exhausted and destroyed by the illness that there is no energy or desire to be the ‘sickest’ anymore, although I can see it working in another way as well for some depending on a variety of factors such as personality and how they view/experience their situation, how easily influenced, etcetera – when it becomes a person’s whole life will they cling to the identity or, quite opposite, want nothing to do with it?) I have personally fallen on the end that I have no interest or patience in/for competition (I don’t say that meaning to convey judgement on those who do or any idea that that makes me superior somehow because I’m still sick, and what it comes down to is that that’s THE PROBLEM.) I think the stigma around competition that exists needs to be addressed as well because clearly it is common and needs to be addressed so those who do feel it need to not feel shamed and instead encouraged for being brave enough to tell the truth of their experience. Which I think in itself is a whole other thing, part of the problem – being sincere. It soundsobvious but I think that’s a big issue. Competitive nature should not be punished but instead addressed in a compassionate, firm fashion and explored.
Very good…thanks for being brave enough to write this, I have a feeling a lot of people will not like it but through the years of being sick with this I am coming to realize that if I am to recover I cannot afford to not be 100% truthful and open to addressing uncomfortable topics – of which there are many, but I really believe in my earlier treatments as an adolescent feeling not “sick enough” was harmful and contributed to where I am today (so incredibly unwell, and I feel so trapped and at a loss of what to do.) which is part of why my patience is lacking for this competitive attitude at the moment – it feels like insult to injury, so pointless, so desperately stupid, but it is REAL and I will gladly listen to a person who is telling the truth about their tendencies in that way. I try to be gentle, too, if I think a person might be receptive to feedback about it…just so often they won’t be and that’s a horrible, helpless feeling on this end of things.
and to clarify, by “desperately stupid” I mean that it is urgent…that there is no room for anything that increases the chance a person will find themselves in this position of utter offering with no clear solution, or a few steps down the line to actually dying (though really, one – utter, bottom hopelessness can lead to suicide)…as we have seen over and over again. Unfortunately by the time that became very real to me I was already like this, but god I’ve known so many wonderful people who have died either from a physical complication or suicide. I’m sure you saw just a few days ago actually on this blog I learned, via a comment by the girl’s mother, that a young woman I was in treatment with died last year by suicide. It’s crushing and horrible, and to understand why she would is worse. (I’m not about to do anything, disclaimer – but i do get it).
Grey has written a follow up post about how we can be contagious in a good way: http://www.greythinking.com/2012/08/11/1025/
Personally, with only a few exceptions I’ve found my fellow AN inmates to be the most caring, supportive, kind-hearted, courageous, spectacularly brilliant girls I’ve ever met. And no, we were all there against our wills so attitude towards recovery wasn’t a factor.
Did I learn some anorexic things there? Sure. But my eating disorder would have and in many cases did work them out regardless.
My friends were my single greatest ally AGAINST doing those things. We were all “in it together”. It would have been even more of a hell without them. You can talk about “learning the ropes of being a ‘better’ anorexic” but to me it was more learning the ropes of surviving the place and dealing with distress better, if not directly about moving forward in recovery.
I’m not in contact with them anymore, we kind of drifted apart during recovery, some I’ve spied on in Facebook others I dare not enquire about for fear they may have lost their battle. But Heggarty, Simone, Melissa — if you’re reading this, hi!!
(edited by Tetyana)
Don’t you mean ‘cons’, not ‘con’s’?
Yes thanks, I just copied directly from the article and it had the same mistake.
Yes absolutely. I knew pretty much NOTHING about anorexia or anything re eating disorders when I first was hospitalised. It really was like ED university for me – I learnt everything I know now, there. And what I learnt endangered my life.
Unfortunately, people with ED do tend to be competitive. Even when they are hating the disease, there is some sick part of it that says “I don’t deserve to get better because I haven’t been sick enough” and when you are surrounded by people who are themselves very sick, visibly emaciated – it’s hard to keep your eyes firmly on your own goals. The tricks that I learnt too – diluting feeds, hiding food, how to purge, my first binge, water loading, etc – all things that prolonged my own hell and ultimately are life threatening.
Also there is a sense of loss of identity already with ED – the more you mix only with other ED people, the more you seem to get lost into a totally ED world where you only know people with ED, you only do ED things, you only think ED thoughts – further entrenches the whole ‘sick’ mentality and utter isolation.
I think that ED treatment should ideally be day patient – and that inpatient should be only for short term critical care. If more than day patient is needed, something more along the lines of transitionary housing might work better than IP. We don’t have residential in Australia, only IP and outpatient and precious few day patient. And very few make it to inpatient due to figures like 4 beds allocated for a population of 6.5 million people in a state.
From what I’ve heard, the lack of treatment available in Australia is a problem.
I think this is the only reason I couldn’t get better when I went inpatient. I wanted help, I was sick of being sick, I went in there prepared to do the hard work and initially give up the decision making to someone else. But then, I met my fellow patients and being (or so I thought incorrectly at the time) the heaviest one there, I simply could not allow myself to get better. Every meal time I was so aware of what everyone else was eating, who was watching me eat, how fast they were eating etc, and the whole focus became “I must not eat faster than everyone else” or “I must not eat more than everyone else” or “I shouldn’t seem hungry or interested in food if nobody else is”.
Every second of the day I spent in the company of other patients I was comparing the size of my arms and legs and stomach, feeling like a fraud because my hair wasn’t falling out as much, telling myself I wasn’t “really” sick because I wasn’t on bedrest or needing wheelchair transfers, I felt guilty at every normal blood result or ECG. I even experienced overwhelming jealousy when my bone density wasn’t as low as some of the other patients. Over the course of my admission (which was meant to be for medical stabilisation) I managed to stop purging most of the time but the rate of my weight loss increased dramatically and I developed extra medical problems I didn’t have before admission. I put it down to competition/guilt for not being sick enough/comparisons with other patients 100%. How sad and pathetic I feel.
I forgot to add that some of the nursing staff made it worse by comparing me to other patients. For example when a new admission came in and the girl was the most terrifyingly emaciated person I had ever seen, one of the nurses told me I should eat more “because look at that poor girl, if you don’t stop this nonsense you might end up like her”. I WANTED to end up like her and I felt like she was saying I wasn’t really sick, that anorexia was a choice on my part but not on the other girl’s part. Invalidation like that made things ten times worse, and just confirmed my belief that I didn’t deserve to get better.
At first, I knew I was using eating to control anxiety. Some of it was body-related anxiety, but a lot was academic, family stresses, etc. It was very clear to me that I was anxious and restriction made me feel better.
When I went inpatient and met some other girls with EDs, THEN I started caring about my weight. And I learned to purge–I hadn’t even know it was something you could do before.
Treatment definitely taught me ‘how to be anorexic.’ But OTH, I probably would have died of starvation without it, so there’s that.
(I know this because I kept a detailed diary during this period of time–you can see my thoughts shifting from life stressors to social competition very obviously from my entries.)
I can attest to this. I’ve struggled with an eating disorder for four years now. My first cycle inpatient I was diagnosed OSFED, simply because I did not meet the weight criteria, despite a significant amount of weight loss. I was sixteen and terrified. My second day, a forty year old woman bragged to me about how she had been in treatment since she was nineteen. When I didn’t react accordingly (impressed, awed, whatever), she started a campaign against me. Said I was not completing meals, hiding food, using othe behaviors, etc. That quickly became her taunting me for still being a ‘normal weight’, referencing in groups that she wished she were as ‘healthy’ as I was, and so on. It escalated further, when I refused to react: she told me I did not, in fact, have an eating disorder because I was not emaciated, that treatment was not necessary for someone my weight, and that I was taking a bed from a ‘real anorexic’ who truly needed it.
That woman was the embodiment of everything I was trying to stop telling myself. I’ve since learned that I can’t feed into it: three stints inpatient and a stay in residential later, and I was that person. I was ‘sick enough’. And I hated every minute of it. There’s always going to be someone sicker. There’s always going to be that voice telling you that you didn’t do it ‘well enough’.
Very interesting and important topic. One that I don’t often see addressed in evidence-supported/CBT strategies for treatment. Although, I suppose these are all geared toward outpatient treatment anyway. Contagion and competition is a barrier to implementing them effectively in a treatment center-based environment.
“Contagion and competition is a barrier to implementing them effectively in a treatment center-based environment.” Implementing evidence-based therapies/CBT strategies? I agree. I often think the cons of inpatient or residential treatment may outweigh the pros. Not always, and not for everyone, but sometimes for sure.
This is a really important topic. I think doctors and therapists, even those that specialize in EDs will often recommend IP when it is NOT in that person’s best interest. I believe that some people are just too competitive to do well in an IP ED unit. I know someone that was IP many, many times for AN. She finally had to go to a general psych program, where she was the only one with AN, to really get better.
And from my own experience, I definitely agree with “all of the above” in terms of what the blog lists as “cons” of IP treatment. Even if one is “sick enough” when she enters, at some point, she is not going to look/present as “sick enough.” Or she may have been transferred from another program and not present as “sick enough” to the new patients and therapists. Or she may have been “sick enough” one time but not this time. I know I felt triggered out of my mind one of the times I was in treatment, and here I was, getting the most intensive care possible!! This is why I think general psych (or medical wards, if that’s what’s needed) are sometimes best.
I also disliked some of the social mores of the different treatment centers. At one, patients moaned and groaned before meals. You *had* to complain about “having” to eat. At the second one, I didn’t hear anyone do this…even though some of the same people went to these two treatment centers. ED patients in general are very self-conscious, and likely to want to fit in. So, if other patients are acting in an unhealthy manner, even by what they are talking about, it’s hard to avoid engaging.
Just my two cents.