To me, the idea of “treatment resistance” in eating disorders sparks some ill feelings. While many have suggested that treatment resistance is common among those with eating disorders, others have noted how receiving the label of “treatment resistant” can make it more difficult to receive needed support or impact how one is perceived in treatment settings and how one’s behaviours are interpreted (e.g., Gremillion, 2003).
Of course, this is a tricky ground to tread, primarily because sometimes people do resist treatment. Regardless, I think it is important to think about what lies behind the resistance to treatment. Is it the type of treatment? The people doing the treating? The compelling nature of the behaviours (e.g., restricting, binging and purging) at least in the short term?
In any case, to say that treatment resistance occupies a contested place in the eating disorder literature would likely be an understatement. Perhaps for this reason, I’ve more often seen treatment resistance featuring within explorations of other phenomena (e.g., outcome studies, qualitative explorations of the experiences of patients in eating disorder units) than as the focus of articles.
Abbate-Daga and colleagues (2013, open access) explored the body of literature on treatment resistance in eating disorders, trying to understand why many patients avoid or drop out of treatment. The authors suggest that understanding treatment resistance might help improve outcomes for people with eating disorders by assisting in tailoring supportive treatment geared toward patient needs.
THE STUDY
This article provides a review of the literature on treatment resistance. The authors conducted a systematic search of common journal databases and found 142 articles about treatment resistance. From these, they selected 71 that fit their inclusion criteria (AN diagnosis, English language, original research/debate article, published between 1990 and 2013).
Their goal was to look at trends and findings from the diverse studies to explore:
- Why patients might express a desire for treatment and recovery and yet not improve
- How resistance (both conscious and unconscious) features in eating disorders
MAIN RESULTS
Study types ranged from qualitative explorations to randomized controlled trials, among others. Because of the diverse nature of the literature, the authors grouped studies into 4 areas:
- Illness awareness
- Patient willingness
- Psychopathological factors related to eating disorder symptomatology
- Therapist aspects
Within these categories, they explored the following tensions.
Denial vs. Insight
Of the 71 studies, 7 focused on denial of illness versus insight into illness. In general, researchers found that the longer someone had been ill, the more insightful they were about their illness.
However, studies differed in describing how such insight impacts resistance to treatment. Some researchers suggested that the more aware and insightful someone was about their illness, the more likely they would be to comply to treatment; others argued that this was not a significant predictor of compliance/resistance.
Instead of being predictive of treatment resistance (as might be inferred by its inclusion in diagnostic criteria and/or assessment prior to entry into treatment), the authors note, treatment resistance might co-occur with denial. Moreover, it is unclear if denial is tied more to “psychosis-like” elements of disorder or if it is a defense mechanism. I wonder; is it always one of these two? Could it be both, or neither? This is an interesting area that warrants further exploration.
Motivation to Change
A bulk of studies (33) looked at how motivated participants were to change. Overall, this body of research indicates how important it is to consider motivation both prior to and during treatment. The authors argue, however:
It is noteworthy that those motivations verbally expressed by patients often do not correspond to an authentic intention to modify their eating disordered behaviors since ED patients can be strongly ambivalent about changing (p. 6)
This one is tricky. While this might certainly be true, I do think it is important to avoid making it sound as though people with eating disorders are being sneaky. Who is to decide what someone’s “authentic” intention is? It is important to stress that this isn’t about people with eating disorders necessarily lying about their motivation to change; perhaps it is more about the difficulty of actually enacting change, even when someone wants to change.
Tied into motivation to change, studies explored by Abbate-Daga et al. also examined how motivation to change can be impacted by several factors, including (among others):
Body and weight preoccupation
- More body/weight preoccupation has been linked to lower motivation, more ambivalence about behaviour change (Ricca et al., 2010; Konstantakopoulos et al., 2011; Steinglass et al., 2007)
Diagnosis
- BN diagnosis (vs. AN) is linked to treatment motivation (Casanovas et al., 2007)
- AN-binge purge subtype is correlated with low responsiveness to treatment (Salbach-Andrae et al., 2009)
- EDNOS has been linked to a speedier and more stable return to symptom remission and a higher motivation to change (Ben-Tovim et al., 2001; Herzog et al., 1999)
Weight status
- A moderate BMI has been linked to greater motivation to change (Geller et al., 2009)
- In the short and medium term, more rapid weight gain may enhance motivation (Lund et al., 2009; Mewes, Tagay & Senf, 2008)
Motivation to change appears to be tied to treatment resistance, the authors suggest, through the stages of change; that is, when the stage of treatment is closely linked to the individual’s level of motivation to change, they are more likely to respond to treatment.
Treatment Outcomes
Twenty-two studies focused on treatment outcomes and possible reasons for the limited success of interventions. Despite a recent move away from looking at maintaining factors, some studies still seek to isolate or refine a model that could account for eating disorders. The basis behind this, of course, is that if we know what causes and sustains eating disorders, we can be better equipped to manage them.
Much of what the authors explore in this section is echoed in the eating disorder literature in general, so I won’t go into detail here. In brief, the authors refer to Fairburn’s model of interacting ED-related and general factors (e.g., relevance of eating, weight, and shape for self-evaluation, self-esteem, perfectionism, difficulty managing emotions) and list a number of other individual (e.g., personality, emotions, relational skills) and social (e.g., caregiver factors, treatment factors) that can lead to eating disorder persistence.
Obviously, many things can impact treatment course. The “perfect storm” of factors could certainly lead to a chronic persistence of the eating disorder, which seems to be the point the authors are making. Further, they suggest that chronicity means that we need to explore what kinds of treatments might challenge these factors and their interaction to minimize resistance to treatment and improve outcomes.
Therapeutic Relationship
The therapeutic relationship, including perspectives from clinicians and individuals in treatment, featured in 18 studies. The authors explain that these studies had conflicting methods for improving experiences and outcomes for patients who resist treatment.
Among things that can facilitate successful outcomes, studies suggested:
- Looking at patients’ motivations (Carter et al, 2012; Karlsson, Clinton & Nevonen, 2013)
- Treatment tailored toward specific patients, using a rehabilitation perspective (Tierney & Fox, 2009; Strober, 2004)
- At times, discharging patients who do not wish to be treated in order to maintain a therapeutic environment for other patients (Masson & Sheeshka, 2009; Vitousek, Watson & Wilson, 1998)
- Working with therapists to explore their own emotional reactions to patients (Forget, Marussi & Le Corff, 2011; Satir et al., 2009; Thompson-Brenner et al., 2012)
- Focusing on patient-therapist interaction and making decision-making processes more equitable (Darcy et al., 2010)
Several also suggested using interventions that directly address treatment resistance, for example:
- Focusing on motivation to change and providing emotional validation (Vitousek et al., 1998)
- Using motivation enhancement strategies, like Motivational Interviewing (Moyers & Rollnick, 2002), Readiness and Motivation Therapy (Geller, Brown & Srikameswaren, 2011) or Motivational Enhanced Therapy (Feld et al., 2001)
SO, WHAT DOES IT ALL MEAN?
The authors have taken a very diverse body of literature and distilled it down into a coherent exploration of treatment resistance. As they note, looking at treatment resistance means taking a number of different angles: what patients think (by asking them to talk about it and through having them fill out scales that might show differences in terms of quality of life, motivation, etc.), what clinicians think, and what other intervening factors (social and biological) might exist and impact treatment resistance.
While 71 studies might seem like a lot, it is actually not that much to go on, especially when the areas of focus and conclusions are diverse. The authors suggest that the literature might be sparse because treatment resistance:
- Might “be easy to notice but difficult to understand” in that it is common but hard to isolate a cause for
- Is often seen as part and parcel of eating disorders, in the clinical practice world
- Has not been a major focus in social/clinical studies as researchers have been preoccupied with determining whether there is a biological basis for resistance in eating disorders
Most interestingly to me, Abbate-Daga et al. note that one of the main reasons why treatment resistance has not been a major focus of many studies is that clinicians might hesitate to study what could be seen as a “failure” in their treatment methods.
Looking at motivation to change, the authors allude to the need to complicate what we mean by “motivation,” and whether people follow a clear and linear path in terms of motivation. Could part of the discrepancy observed between expressed and acted motivation be due to the desire to please treatment providers or loved ones, or (at least in part) linked to changes in emotional and physical states?
I find the authors’ suggestions for navigating the tricky terrain of motivation vs. ambivalence quite compelling: they note that it is important to demonstrate empathy and work on exploring with patients what some of the positive and negative elements of the disorder have been for them. While this seems pretty straightforward, the willingness to consider what the eating disorder has provided for patients remains a less common practice.
I am also encouraged that the authors advocate for an approach that recognizes the individuality and complexity of eating disorders in general and resistance to treatment in particular. At the same time, they recognize that it is not so easy to take a very individualized approach to treating eating disorders: we face an economic climate wherein resources for individuals and treatment centres alike are sparse; are insurance companies more likely to take the time to assess the needs of a particular case, or hold onto whatever limited evidence there is for the benefits of one type of treatment?
This is a key question in the field in general, and one that is not limited to treatment resistance: how can we match the complex needs of people with eating disorders to limited resources? Who is responsible for ensuring that people’s needs are met, and that the type of treatment people are receiving is appropriate for them? I could rant about this for hours, so I’ll leave it here, but suffice to say that treatment response, outcomes, and appropriateness is a complex issue with individual, relational, social, and systemic investments.
References
Abbate-Daga, G., Amianto, F., Delsedime, N., De-Bacco, C., & Fassino, S. (2013). Resistance to treatment and change in anorexia nervosa: a clinical overview. BMC Psychiatry, 13 (1) DOI: 10.1186/1471-244X-13-294
“Some researchers suggested that the more aware and insightful someone was about their illness, the more likely they would be to comply to treatment; others argued that this was not a significant predictor of compliance/resistance.”
Yeah, I don’t necessarily buy that. Individuals might feel that they are very well aware of their illness and feel that the treatment offered to them doesn’t meet their needs, and so not comply with the treatment offered.
“At the same time, they recognize that it is not so easy to take a very individualized approach to treating eating disorders: we face an economic climate wherein resources for individuals and treatment centres alike are sparse; are insurance companies more likely to take the time to assess the needs of a particular case, or hold onto whatever limited evidence there is for the benefits of one type of treatment?”
Why do you think insurance companies care about evidence? Is there evidence of that? Private insurance here covers all sorts of stuff that’s widely known to be pseudoscience. In the US, insurance companies cover residential Tx centers that implement a whole array of non-evidence based practices, with some hardly implementing evidence-based practices. I don’t think they care. I think the government is more likely to care, but even then, I am not convinced the question you are asking is appropriate.
“This is a key question in the field in general, and one that is not limited to treatment resistance: how can we match the complex needs of people with eating disorders to limited resources?”
We can’t?
“Who is responsible for ensuring that people’s needs are met, and that the type of treatment people are receiving is appropriate for them?”
The government for providing adequate funding, healthcare professionals for utilizing EBPs, and patients and families (along with patient advocates and healthcare professionals) for ensuring the patient receives appropriate treatment. In my view, the biggest bottleneck or limiting factor in Canada is the government.
I thought the same about people being well aware of their illness and yet not finding what they want/need on offer in the treatment world. This is where I was going with the kind of grasping-at-straws that can go on in terms of what is on offer. I think it IS easier to get funding/insurance for types of treatment deemed evidence-based (e.g. FBT, CBT in some cases) even if these aren’t the most appropriate treatments for the case. I do think insurance companies (well maybe not insurance companies specifically but society in general perhaps?) is clinging to evidence-based treatment, even when that just means that they’ve only tested one type of treatment, really. I just got through a bunch of articles that talked about the difficulty of providing alternative support in an austere economic climate where certain types of protocols (specifically linked to DSM in the case of what I was reading); so I’d say there is at least some evidence of that, yes. In what way do you think the question is inappropriate- do you mean inappropriate in the sense of it’s a dangerous question to be asking or that it’s the wrong question to ask and that there might be a better one to ask? I think beyond offering EBP we need to be looking at how evidence is obtained and what counts as evidence and for what specifically. I think often the disconnect lies not in the quality of the evidence but in it’s interpretation, actually… i.e., not consider for whom and under what circumstances something is evidence-based.
I’m unsatisfied with the “we can’t” perspective. Can we really not, if we work from a broader systemic-change perspective? Or are my ambitions too lofty? I agree that the government provides limitations, but I don’t think the limitations are beyond changing such that we might offer a wider suite of treatment options at the very least. Going back to people being aware of their illness and/or its severity but not complying with treatment because what they want is not on offer, why not ask people what they DO think would be helpful? I recognize systemic limits & the inability to offer individualized service on a broad scale (I guess that would be a contradiction in terms) but I think there is more to be done to massage systems in a way that would lead to there being at the very least more options.
I suspect there’s a big difference (or maybe just a difference) between how much governments and insurance companies care about evidence. Insurance companies routinely cover straight-up baloney (like homeopathy). Of course, the problem of what is considered evidence-based (nevermind the issue of funding to show that something is or isn’t evidence-based) is there, but I think it will always exist in all spheres of medicine.
The question I’d pose, I think, is why have we bought into the idea that we, as a society, cannot “afford” better medical treatment and/or more treatment period. My issue with the question as you posed it is that I feel you take the poor economic climate (which in the current context I am reading as “we don’t have enough money”) as a factual statement and/or one that’s a result of factors that are completely outside of corporate tax breaks, other tax cuts, and diversion of funding for things like the military or whatever. I KNOW you agree with me on this (I think, anyway), but that’s how the question you posed came off as sounding to me.
I meant “we can’t” in that, unless we actually change things on a systemic or institutional level, I feel we simply cannot do much better than how we are already doing, except perhaps by instituting programs like the one I mentioned in my post on treating severe AN in the community (so, altering who gets what treatment and when but not requiring more (or substantially more) funding and/or training). I think if we work on improving funding or improving training, or a myriad of other things, then we can, for sure. Or well, I hope. I need to have the hope, anyway. But I think if the resources are as limited as they are right now, I don’t think we will have much improvement. I feel that the limiting factor right now is limited resources. But I could be wrong. Maybe I’m completely wrong. That’d probably be good news.
Yeah, you’re probably right re: difference between insurance company vs. government caring about evidence. Ultimately, the government ends up funding the research that garners evidence, too, so there is that. I have always wondered about insurance companies’ choices… why would they cover things like homeopathy but not physiotherapy, for example? Anyway, that’s probably a whole lengthy debate in and of itself.
Hm, it definitely wasn’t my intent to make that as a factual statement. Far from it, I actually think we’re on the same page about the need to shift broader systems (political economic) in a way that would mean that we COULD afford better treatment. I’m surprised and somewhat dismayed that it came off as if I thought it was beyond altering. It’s funny, because I think I was interpreting your “I can’t” in a similar way (i.e. that these things are “the way things are” therefore we can’t do much to change the state of affairs). Totally agree that we need to address the broader system/institution (largely governmental) structures. I suppose the point of my question was to flag the NEED to change such things; in a way. I don’t know, maybe that doesn’t make sense?
I have no idea how insurance companies decide what to cover and what not to cover, but I strongly suspect it comes down to money. Perhaps covering homeopathy is more popular than covering something else that’s perhaps evidence-based? I have no idea. I am quite cynical and think it all comes down to money, power, and lobbying.
I don’t think your question came off as suggesting the situation is beyond altering, but that this idea that we don’t have money to fund necessary treatment is legitimate. I just don’t think it is legitimate. Maybe it is because you wrote “economic climate”? I think we face a climate where those things are sparse, but I don’t think it has to do with the fact that we don’t have money for it; I think it has to do with the fact that there’s little political will to invest in it.
The other problem I had with it was kind of legitimizing the existence of insurance companies? I don’t know. I’m thinking about all of this in a Canadian context, of course.
Hm, well I’d say that is mostly pragmatism on my part–mostly musing on things and asking questions with this broader perspective that there might be things we could do to improve the situation in the interim while the dominant political economic sentiment is one of conservatism. Which is not at all to say that I take a neoliberal perspective on it, but more so that I recognize that many prefer to uphold the status quo and so while I ultimately think the task is broader social change a start might be to ask questions that call out other possible alternatives?
Anyway, my use of the word climate likely came from the literature I’ve been reading lately; I didn’t think about it too much to be honest. Maybe I should have? I hesitate to make the comments all about political economy, haha.
Still, I’m wondering what you mean when you say the legitimacy of the existence of insurance companies? I know in the Canadian context this is a tricky issue because theoretically we have public health care but again that rhetoric of “free” really doesn’t mean everything is free (I’m not saying anything profound there I know) so given the reality we face insurance companies do in some way pick up the slack there (obviously when there is access and when their priorities–financial obviously–coincide with those needing coverage- which is rare…); so for the time being what other alternatives are there?
I kind of feel like I am digging myself into a hole here and I’m not sure if I am making sense– basically, I think we might actually agree and I am just not as articulate about these issues as I should be so I am making it seem like I am a libertarian or a neoliberal and bringing out your political! Hah.
And I guess to further clarify my use of climate… Less that the money isn’t there but the will to use it in the most patient-centred way is not there (governmentally).
I really derailed this convo! Crap. It is probably because I am thinking SO much about politics and economics lately, and also currently reading “Harperism.”
Yeah, and well, you (we) can be battling on many fronts (demanding broader change, and trying to use the limited resources in the best possible way).
When I said I question the legitimacy, I mean I question the idea of putting how healthcare is funded on the market. I don’t claim, and I think it is silly to claim, that a public system is free. Of course it is not free. In Ontario, private insurance companies cover things that I think should be covered by governmental insurance, such as dental care, drugs, and optometry. It is not like they cover some niche services. We all need dental care. I question that they are doing a better job than *an appropriately funded* governmental body would. I would like more money to be put into the public system, and to limit the use of private insurance companies.
Yeah, I do think we agree. I think we are largely talking about language haha.
Haha, readers (if they’re reading the comments) are getting to see your political colours! Actually I think it’s interesting that the convo has gone in this direction, in a way (though I feel less equipped to manage the debate as I’ve been distanced from any serious engagement with political economy since changing my undergrad major all those years ago…), because it shows how ultimately most (all?) issues are actually tied into politics and economics. I know, it seems obvious, but I remember at one point saying I didn’t “like politics” and being proven wrong by the degree to which everything social actually happens within this political economic nexus. In any case, it does matter.
I absolutely agree that we can (and should) be battling on many fronts in terms of calling for systemic change and working with what we have in the meantime to do a better job of allocation.
Right, ok. True. I think one of the biggest myths about Canada is the “free healthcare” thing. You know, the butt of jokes from Americans and others being like “I’ll move to Canada” when something bad happens. And don’t even get me started on the lack of inclusion of dental care… ridiculous, given that good oral health can lead to better general health. Yeah, I can see that we’re on the same page in terms of it being far preferable to limit the use of private insurance companies. Absolutely.
I try not to discuss politics too much on here, Tumblr, or Twitter, but I also think it is impossible to avoid doing so because the things we write about here are not in a vacuum, removed from society. You don’t have to “like” it, but I think people who say politics don’t matter are naive. Our political and economic views affect how we think health care should be funded and delivered, how much and to whom money should be allocated for research, and how (and by whom) research findings should be disseminated. I care about all of those things a lot. Still, I do a lot of self-censorship when it comes to this stuff on SEDs/SEDs social media sites. If I didn’t, I think my SEDs Twitter and Tumblr pages would cease to be about science and/or eating disorders!
Yeah, of course it is not free. It is an absurd argument. I think historically OHIP was meant to cover services by the the college of physicians and surgeons, which is why things like dental care were not covered. I might be wrong about this; I was told this by a medical student.
I used to work for a medical billing company in the US and the clinic I worked for was an eating disorder treatment facility. Coverage for eating disorders varies depending on the insurance company, the type of plan you purchase, and the specific type of treatment (not so much FBT vs CBT, but individual therapy or nutritional therapy or group therapy or residential, etc).
Insurance companies have a bottom line: profit. That is important to keep in mind and obviously affects what they cover. In my work experience, insurance companies deny whenever possible. Coverage will change based on whether your clinic is out-of-network or in-network (you’ll pay more for out-of-network clinics). They’ll deny because you needed prior authorization from a physician before receiving that medical procedure, so you make 4000 attempts to send proper documentation to the insurance company and there will be a problem with how the documentation was received, the format it was in, it didn’t include a diagnosis, blah blah blah, so it’s 3 months later and you sent everything the way they wanted it and now they’re denying for timely filing. It’s ridiculous.
Insurance companies in the US do not care about evidence-based treatment. They don’t have the time to delve that deeply into the treatment process. They just want the patient in and out as quickly as possible.
Interestingly, most insurance companies will not cover visits with dieticians for people with eating disorders. They may cover it if you have a co-morbid condition (diabetes or Celiac, for example. Obesity may be covered by some cases by some insurance companies, which is interesting and a whole different topic to get into). It’s not considered a medical necessity for people with eating disorders to seek nutritional services, according to the insurance company. They make the rules.
Obviously, if you are able to afford a better insurance plan, you will be covered for more and better services. So if you are poor and have crappy insurance, you either won’t be able to go to treatment or go into serious debt. I’ve seen patient accounts with $10,000 + due to the patient. I’ve heard stories of people taking a second mortgage to pay for treatment. So the more money you have, the better insurance you’ll likely have, the more likely you’ll have access to treatment. After you have THAT all sorted out, THEN you can figure out what treatment centers have evidence-based treatment available. Of course, it’s on you, the patient, to get this all figured out. The political/economic piece is so important, so I’m glad you two are bringing it up!
Thanks so much for your comment!
The situation in the US is scary. I don’t know exactly how comparable (or different) private insurance is in Canada vs. US, so it is hard for me to comment. I’ve only used it for drugs and dental, and in both cases, I would pay out of pocket and just get reimbursed by the insurance company; It was fairly easy and fairly simple, but not nearly as simple as for things covered by the province’s insurance plan. I literally do nothing but update my healthcare providers whenever I get a new health card and the letters on the card change (every 5 years I think).
The dietitian thing doesn’t surprise me. I feel the situation is very similar here, too. It is ridiculous. If you receive services as part of say, outpatient treatment, you’ll be fine. But if you are doing it privately, outside of a setting where they are covered by provincial insurance, you need to pay out of pocket. It is a crazy system.
Thanks for this! It is interesting to hear about the way things work (in the States at least) from the inside. It’s all quite murky to me though I had a sneaking suspicion it all came down to profit (it always seems to…)
The network thing in the States is super confusing to me; I’m a member of the Academy for Eating Disorders and so I see referral requests via the list serv, and they often specify what kind of insurance network the person belongs to to make sure they can get the services covered. It is interesting (distressing?) to me that these are the hoops clients & providers need to jump through to establish a hopefully helpful treatment path. I’ve used private insurance in Canada for things like physio, dietician, dental, and chiropractic… it is interesting to me what does and does not require the kind of documentation you describe- for example, I needed a referral for physio but not chiropractic. This makes zero sense to me!
The lack of dietitian coverage is another distressing thing. I think some but not all of my work with dieticians in an outpatient setting were covered by private insurance but not our provincial health care. The entirety of my time in intensive outpatient (day hospital) treatment was covered by provincial health care but as soon as that was done if I wanted to continue with a dietitian or therapist etc. it would have been semi-covered by private insurance or out of pocket. All of this really makes me think about how much it actually costs (financially) to recover, in a way. Also, I find the fact that nutritional counselling might be covered in the context of obesity interesting- I think that clearly demonstrates how priority-making happens in the political economic sense- as obesity has been played up as a public health crisis, evidently a government/companies would need to show it is putting it’s money where it’s mouth is, in a sense, and covering some services related to that. Shockingly, eating disorders are still not considered to be as serious, which is ridiculous. So much evidence about the seriousness of eating disorders and difficulty of recovery, and yet limited responsiveness… is it any wonder that people feel their struggles are delegitimized, in a situation like this?
Anyway, thanks again for your comment!
I don’t think the companies need to or care to show anything. I think it is all about money. Eating disorders are expensive to treat, and they are much less frequent than obesity. I think it probably makes a lot more sense for financial companies to cover obesity-related expenses. More people would want them, and overall, they are probably cheaper to cover. I suspect something like that is the case, anyway.
Should have clarified… chiropractic is through private insurance (through the university). I go for active release technique for chronic back & neck pain, not for adjustments (though I know this isn’t the point of our discussion here thought I might clarify…)
“I think it is important to think about what lies behind the resistance to treatment.”
Note that I can only speak from my (ongoing) experience. A big part of it, I think, is the normalcy of behaviours (or even routines) devised to hide the ED. Not necessarily what kind of deceptions are employed, but that they are so deeply ingrained. Some people have gone for years without confiding in others, that’s years living with all sorts of defense mechanisms (the ed itself and maybe comorbid issues) and defenses drawn against the horror of the ed (and its discovery by outsiders), until the latter have become second nature. And the disordered eating itself is the first nature. So, after treatment, what will be left? Unsupportive treatment personnel or families that are partners in crime do not help to instill enough trust that something (very good) will be left and will in fact start to shine brightly.
I think it’s also important to bear in mind that, in order to cope with the realities of living with an ed, suffers likely deliberately shut off parts of their personality to protect their very core. E.g. accepting that one “has to” lie or wasting food despite being morally opposed to lying or wastefulness, starting to eat meat for its low calorie content or in a binge in spite of vegetarian leanings, getting aggressive towards beloved people because starvation (or any other behaviour!) affects emotions…When faced with the full extent of these perceived moral shortcomings in therapy, the sufferer might feel that he/she is an intrinsically bad person, giving credence to the ed voice. I think that should be addressed in treatment, too.
Good point; the authors did talk about how resistance may be a defence mechanism that is part and parcel of the eating disorder, but I think you put it well when you say that these kinds of defence mechanisms (that can act as defence mechanisms) might come as second nature (following the ED behaviours themselves as first nature).
I’m wondering what you think would be a good way to go about instilling the trust that something good will be left after the ED behaviours are left behind? I think it can be hard to do this in a way that fully captures the difficulty of recovery while also presenting a picture of recovery as somewhere someone wants to get. I think it can be a tricky road to navigate, because of course it is important to highlight the benefits of recovery and present alternatives to the eating disorder, but important to make sure we’re leaving room for people to determine what recovery looks like for them.
Interesting point about the personality change aspect of navigating the eating disorder and treatment; in what was would you want to see that managed in a treatment context? I’ve seen some narrative therapists work with a technique of “re-storying” so that people re-evaluate drivers for behaviour, and I believe other therapeutic techniques allow for a reconsideration of the reasons why sufferers might engage in behaviours and/or cover them up. I agree though, it might be worth exploring these things in more depth in treatment if they feel salient to the person seeking treatment.
“Some researchers suggested that the more aware and insightful someone was about their illness, the more likely they would be to comply to treatment; others argued that this was not a significant predictor of compliance/resistance.”
Couldn’t so-called “insight” also be detrimental to recovery? I can think of various scenarios that don’t have anything to do with what type of treatment suits the sufferer.
Insight taken too far can lead to stoic acceptance of the disorder. Insight can lead to “arrogance” when therapy veers into the “wrong” direction…or be interpreted as aloofness by the therapist (btw, that false perception was one of the reasons I cancelled therapy). Purely intellectual insight detaches one further from ones feelings. Furthermore, it might become easier to fool others (say the right things at the right time) and call out therapeutic methods as tricks (“heard it all before”). The more important kind of insight would be understanding how much unmitigated suffering the ED brings (thus increasing will to change), not how treacherous the ed voice is or how unhealthy or how the disorder came about. Is there this distinction when talking about insight?
It’s scary to read about the US insurance system (incredible how they’d rather let people get extremely ill before covering treatment, it makes me so angry), but even though my insurance here in the EU would gladly cover any sort of therapy, I still wouldn’t apply – it’ll be in the files, and who knows what will be done with that piece of info in the far future (by the insurance company, denying treatment for other illness because I brought them upon myself, or by potential employers…) . But the main detriment is admitting defeat by accepting therapy. I’d be as weak as the ed would have me believe. So I’d feel crushed and probably have a hard time complying, how would they convince me that I am not weak? Especially if I can’t admit my weakness and instead act mature and above it all?
Funnily enough, whenever I did try to get help (a couple of times), my little act worked and everyone assumed I was brilliant and confident, just a little repressed by my “evil” parents. Wow, way off. Needless to say, when therapy creates even more pressure to be strong, there’s no way of it improving my outlook, is there? I can only imagine how crushing it must be to be denied treatment again and again for someone who has mustered the courage to apply for it.
I’m unsure if insight could be detrimental to recovery- I’m unconvinced that insight would lead to arrogance. I would concede that having a lot of insight or experience could lead someone to thinking they know better than the therapist, but I’d hesitate to call it arrogance. Insight is another complicated issue; I still agree with the authors that it is possible that insight might lead to treatment compliance in one sense (i.e. recognizing that the eating disorder is not serving someone well) but not in others (i.e. thinking, as you say, that therapy isn’t going where one wants it to go). I think it is more complicated than that, though. The authors did also note that in some types of approaches, illness insight was not correlated with treatment compliance- notably family based treatment. So we also have to look at the age and stage of the sufferer (i.e, an adolescent vs. an adult vs. an older adult) and who is doing the treating (i.e. parent vs. therapist vs. dietitian) and all the relationship factors there. You also make a good point about what kind of insight we’re talking about- are we talking about knowing that the eating disorder is causing issues in one’s life, or insight about what kind of treatment would be best suited? This goes double for motivation, too, and resistance itself- is someone resistant to the idea of treatment/unmotivated to seek treatment, or resistant IN treatment/unmotivated IN treatment? Again, these factors will have different implications depending on the person’s social location (age, gender, culture, socioeconomic status etc.) and the type of treatment they’re engaged in.
The insurance issues are so scary & unfortunate, I agree. It does all get tied up into motivation and implications of treatment seeking, too. The refusal to provide insurance treatment before someone is at an incredibly medically compromised position (and the decision to terminate treatment before someone is really ready) is so unfortunate not only because it is dangerous but because it can feed into the perception that someone “isn’t sick enough” which helps no one.
Thanks for your comments- lots to think about.
Thank you so much for replying!
I wouldn’t call it arrogance, either, but showing “too much” insight didn’t seem to be well received by my therapists (and those of others I’ve talked to). Talking about ones illness in a very analytical way was perceived as “cutting off my feelings” or “playing a part to garner attention” or just plain non-compliance when countering the therapist’s interpretation. The last point destroys compliance, indeed, because if despite having some insight already, that very insight is ridiculed, how would one trust the therapist – or oneself?
E.g. My therapist:#”Allow yourself to hate your parents.” Me:–“They are a factor in my becoming ill, but I do not hate them.” #”But you must hate them for what they are like.” — “I never felt their behaviour towards me warranted hate.” #”We can’t make progress if you don’t admit your feelings, for example hatred.”
Guess what, to this day, I have never had a single reason to hate my parents. But trying to explain that was futile. For weeks, I racked my mind trying to find “hate” somewhere. In the end, I could only make one decision – distrust myself completely or distrust the therapist. Neither option is conducive to recovery, but many are forced to make such a decision. The latter option gets you thrown out, the former is scary because you literally get lost.
Oh I can definitely relate to that, I see what you mean. Interesting, because I don’t think intellectualizing or analyzing things is all that strange, really. Of course we will try to develop more insight about things and learn as much as we can! I suppose it can cross a line, but interesting that being analytical isn’t seen as normative. This also brings up another point for me- what is taken as compliance, and what is taken as resistance? Does it depend on the treatment provider, and their approach? I think this likely has something to do with it. In Gremillion’s book (cited in the first paragraph) she talks, too, about how at a certain point in some kinds of treatment, resistance is seen as a “good thing” in a way, especially in adolescents because it signals that they are re-asserting themselves… I’m not sure I 100% buy that but I think it does raise the question of which behaviours are perceived as resistant and which are perceived as compliant, at what stage of treatment & recovery (i.e. prior to, during, after) and by who.
I’m sorry your therapist wasn’t more receptive re: your relationship with your parents. It troubles me that people continue to blame parents for eating disorders despite all the work that has been done to show that parents don’t cause eating disorders. I don’t think this is productive for anyone.
“I wouldn’t call it arrogance, either, but showing “too much” insight didn’t seem to be well received by my therapists (and those of others I’ve talked to).”
Interesting. This has not been my experience at all. Indeed, I think I’ve had the exact opposite experience, as have some of my friends. Admittedly, I haven’t surveyed all of them on this. My point is: I am not sure we can draw conclusions on this issue from anecdotes. I think this would really depend on the therapist, patient, and patient-therapist dynamic.
Also, any therapist that says you “must” or “should” do or feel something needs to stop.
I’ve found that insight has been a frustrating component in my recovery process, as I feel that, though I understand my eating disorder and can rationally talk about how it keeps me from moving forwards, the process of recovery is still much, much harder than just knowing what to do and how to do it. This ability to understand myself and my disorder but not move forward ends up making me incredibly irritated and hopeless because I know what I’m doing and just “can’t”/won’t/don’t stop. It’s not that it makes me treatment resistant, per se, rather that it just contributes to my overall frustration about my lack of progress because it is necessary but not sufficient to move forwards. I feel even more powerless than I might had I less insight because my thoughts and my actions are completely misaligned.
On the topic of motivation, I find discussions of “state” vs. “trait” interesting in many different contexts, and I think motivation is one of the areas in which this applies. I think that often motivation is portrayed as rather static, at least over the short-term, in that someone has motivation or does not have motivation, but in myself and others I’ve observed, motivation seems to fluctuate much more than that. As in, I may be super motivated all morning and then hit an obstacle, having intense urges to binge and purge, and my motivation is not strong enough to outlast that. It’s not that I’m not motivated, just that my motivation flags in times of trial, if that makes sense. Motivation ebbs and flows, and very few people are motivated all the time, at least in my opinion. But even though my actions may seem like I am unmotivated, it’s not that this is true but rather that my motivation is not steady enough to hold me through wavering moods.
I have found that when I meet with new clinicians, they always seem to think I completely have my act together by my insight and the way I speak about my disorder, and then I talk about my behaviors and they can’t reconcile the picture, whereas in many spheres of public health, we are constantly becoming more attuned to the idea that knowledge and increasing awareness is certainly not equal to behavioral change.
And insurance…. OH MY GOSH. I am from the US, and I can tell you it is a huge hassle. It’s all money and the bottom line. Even to enable more people to access for-profit insurance, we had to deal with huge amounts of fear-mongering about our government being “socialist” and “paying all of our taxes so that those crackheads on welfare can get free health care”, so I am not optimistic about the ability of the government to make health care less of a business and more of a human service. Our political dialogue is just so jacked up to the point that it is almost impossible to even have an intelligent conversation about this kind of thing without people getting in screaming matches. Regardless of what one’s personal beliefs are about healthcare being a right or a privilege, I don’t think it’s good for anyone that our country spends such an incredible amount of money on healthcare without the outcomes to back it up. BUT our Congress was built in the 1700s by founding fathers who feared mob rule and wanted our Constitution to be resistant to change, and now here we are several hundred years later, with gridlocked arguments that prevent much overdue change from ever occurring except in fragmented, disjointed bits.
AND stepping off my political soapbox in 3,2,1…
One thing I’ve been wondering about, having read a lot of neuroleptics research this year, is treatment resistance‘s differing and somewhat contradictory connotations within mental illnesses research and mental illnesses interventions research (and other professional writing in these areas).
In the context of eating disorders and their treatment,* treatment resistance connotes willfulness or a similarly attitudinal roadblock-to-improvement located in the patient/consumer. In neuroleptics research, what I’ve read of it, treatment resistance means that the treatment failed to produce any of its desired results (results desired by the provider, the consumer, or both) or only produced a partial response despite its being used in accordance with its protocol. From the American Psychiatric Association’s Practice Guideline for the Treatment of Patients with Schizophrenia, Second Edition (all of the APA Practice Guidelines are available here): “Treatment resistance is defined as little or no symptomatic response to multiple (at least two) antipsychotic trials of an adequate duration (at least 6 weeks) and dose (therapeutic range).” In this definition, the fault lies with the treatment for failing the consumer. (The treatment failure is usually explained as a mismatch between a particular drug and the consumer.) ED researchers’ usage of treatment resistance more closely matches neuroleptics researchers’ usage of noncompliance (or non-adherence).
I don’t mind that different areas of study and practice often use the same term to mean different things. (Although, I have to say, because so many people with eating disorders receive treatment for other psychiatric disorders—especially mood disorders—with which they’re diagnosed, I’ve encountered treatment resistance being used both ways in the same paragraph!) What I wonder is why the same term connotes either a sort of “failure” and often culpability on the part of the patient or a failure on the part of the treatment. Those are very different attitudes.
I can think of plenty of reasons for this; I just don’t know which are most likely.
I assume that this has something to do with it: at the moment, schizophrenia-typed disorders and psychosis-labeled phenomena are most popularly (and, I would argue, oversimplistically, pseudoscientifically, and unhelpfully) framed as “brain disease”: “organic mental illness,” “chemical imbalance,” “faulty wiring.” Same for mood disorders. Meanwhile eating disorders are most popularly framed as behavioral and psychosocial disorders which are capable of effecting physical sequelae.
Maybe members of psychiatric and psychological fields are more willing to fault the intervention when the intervention comes prepackaged and is designed and produced by people outside academic and clinical psychiatry and psychology and more willing to fault the patient/consumer when the intervention depends much more upon, and therefore speaks much more to, the provider’s own mental faculties.
* I’m not familiar with how treatment resistance is defined in the contexts of other behavioral-typed mental disorders (e.g., substance abuse disorders). Looking over the APA Practice Guideline for the Treatment of Patients with Obsessive-Compulsive Disorder, treatment resistance appears to mean noncompliance/non-adherence sometimes and nonresponse other times.