It can be somewhat controversial to suggest that untreated recovery from eating disorders is possible. Certainly, people have varied opinions about whether someone can enact the difficult behavioral and attitudinal changes necessary to recover without the help of (at the very least) a therapist and a dietitian. Nonetheless, we still hear stories about individuals who consider themselves recovered without having sought out external sources of professional support.
When I think about untreated (or “spontaneous”) recovery from eating disorders, two studies in particular come to mind. The first study I am thinking about was written by Vandereycken (2012) and explores self-change, providing an overview of community studies of individuals who have not sought treatment for their eating disorders and implications for treatment and recovery. The second, by Woods (2004) is a qualitative study looking at the experiences of 16 women and 2 men who report recovering from AN and BN without having sought treatment. Vandereycken identifies some difficulties associated with trying to study untreated recovery, and Woods’ study highlights some possible mechanisms through which untreated recovery might occur.
“Spontaneous” Recovery?
Vandereycken grounds his exploration in the idea of “spontaneous recovery,” taken from literature on substance use and addictions. What this means, in short, is that sometimes people “suddenly” (though what suddenly means here might be debateable–often this might come after years of attempts and a great deal of struggle) recover from their disorders without external, formal help. Vandereycken draws on Sobell (2007) to note that this concept has been largely ignored in the eating disorder (and other) literature for a number of reasons:
- The idea that people can spontaneously remit from symptoms can be seen as a “threat” to health care providers, as it may put their role into question
- Those who “spontaneously recover” may not actually come into contact with health care practitioners at all, and so are a more difficult population to study
- It is possible that those who spontaneously recover did not experience the disorder to a degree considered “serious” or “at clinical levels” so they may not be easily compared to those in treatment studies
- Using a disease model means sees disorders as only resolvable via treatment intervention, which closes off the possibility of spontaneous recovery, making it unlikely that it will be studied by those who take this orientation
So, given that spontaneous recovery has not featured heavily in eating disorder research, how can we draw any conclusions about the possibility of recovery without intervention? As the author notes, most of what we know about self-change in eating disorders comes from 3 sources:
- Longitudinal/prevalence studies (e.g., community or population level research)
- Wait-list control/drop out analysis (e.g. following up with those who have not yet received treatment or who drop out of treatment/research studies)
- Active case finding studies (e.g. seeking out those who are suffering but not seeking treatment)
Of course, it can be very difficult to get accurate data about those who don’t seek treatment for a number of reasons, the most basic of which is that if someone is not seeking treatment, they might also be unlikely to want to participate in a research study. Vandereycken presents 10 examples of community studies to see what proportion of individuals achieved “clinical recovery” without treatment.
Clinical Recovery without a Clinic?
Vandereycken defines clinical recovery as “almost complete remission of major eating disorder symptoms” (p. 88). Looking at the 10 studies he outlines, the literature is fuzzy about the possibility of spontaneous recovery, particularly as many individuals sign up for and drop off of treatment wait lists, can be difficult to follow in the long term, and studies use different criteria to define remission and recovery. Some of the findings he highlights are as follows:
- Cases of spontaneous remission from bulimia nervosa have been noted, with women never treated reporting some degree of continuing psychosocial distress (Jager, Klapper & Liedtke, 1994)
- Individuals with binge eating disorder have recovered without treatment, and may be less likely to subsequently seek treatment than individuals attempting to recover from bulimia nervosa without treatment (Fairburn, Cooper, Doll, Norman, & O’Connor, 2000)
- Looking at subclinical eating disorders, spontaneous remission seems more likely; for example, Cotrufo, Monteleone, Castaldo & Maj, 2004 noted that after 4 years, 8 of 12 young women with subclinical eating disorders no longer showed major symptoms
- In a study of Finnish twins, Keski-Rahkonen et al. (2009) revealed many undetected cases of eating disorders and similar remission rates between cases of both AN and BN that were and were not detected
Despite the difficulty of comparing studies, these studies do indicate that at least some people are recovering without the help of medical professionals (and, unfortunately, that this sometimes happens because their disorders have not been noticed by health care professionals). As Vandereycken notes, it can also be hard to get a sense of what did help these individuals to recover, if it wasn’t professional treatment. Few studies explore self-help (outside of self-help as additional support alongside other forms of treatment). Conveniently, the author cites Woods (2004) as one example of a qualitative study looking at how individuals might recover in the absence of formal help.
Exploring Untreated Recovery
Woods used grounded theory to explore the experiences of 18 individuals who had recovered without formal treatment. Of these:
- 2 were men
- 16 were women
- Participants ranged in age from 18-21
- 8 women and 1 man had experienced purging-type BN
- 6 women and 1 man had experienced restricting-type AN
- 2 women had experienced binge-purge type AN
- Average duration of illness was nearly 2 years (range 6 months-4 years)
Participants filled out an open-ended questionnaire about their experience of having an eating disorder, whether there was a “turning point” toward recovery, whether they had experienced any kind of treatment, and what they found helpful in maintaining recovery. Of the participants, only two had experienced any kind of interaction with healthcare providers around their disorders, both of which were with a primary care physician.
Exploring the “turning point” in recovery, participants tended to report that empathy and support from a loved one had been key to their movement toward a place of wellbeing. Some also noted that the physical ramifications of their disorders got to a point where they realized the seriousness of their disorder, sparking in them the desire to move away from their symptoms. Recovery was not an easy upswing from this point, however. Among difficulties on the way to recovery, participants noted continued disordered thoughts, trouble finding an identity without their disorder, and troublesome physical discomfort (e.g. feeling “too full” after a meal).
IMPLICATIONS
Perhaps interestingly, given my strongly feminist orientation in my research, I found that Woods’ exploration of this study’s results hinges a bit too strongly on the sociocultural factors that lead to the development of eating disorders. The findings relating to the importance of social support and empathy in support of recovery are important and I think useful for guiding supportive alternative measures for individuals who don’t feel that their needs are being met in traditional treatment settings.
However, we know that not everyone who experiences pressure around thinness and perfection develops an eating disorder. While the kinds of measures Woods advocates in her article (e.g. supportive and empathetic interactions with loved ones) are almost self-evidently a good idea, providing this is not a guaranteed buffer against the development of an eating disorder or a guarantee that recovery attempts will be successful. When we talk about families and eating disorders, I cannot overstate the importance of avoiding blame: too often, findings such as these result in families (particularly mothers, historically) being implicated in the development of disorders. It is important to cautiously interpret and share results like these to avoid this kind of blaming.
It is also important to consider that not everyone has access to the kind of highly supportive family and friend network that would facilitate untreated recovery. Equally, untreated recovery is not a categorically good idea for all. Often, medical intervention is necessary to restore health; the complexity of the physical, emotional and affective components of eating disorders complicates the idea of recovering with no intervention at all.
As Vandereycken notes, too, “spontaneous recovery” does not mean that recovery does not involve a lot of work. Perhaps the kinds of environments Woods advocates for can help to make the process a bit more smooth, but recovery is still not something that happens at the snap of one’s fingers of even with the decision to get better.
What Does the Existence of Untreated/Spontaneous Recovery Do for Our Understanding of Recovery?
In my opinion, these studies further emphasize the variability in recovery and the pathways for getting there. Vandereycken in particular highlights the tensions around the idea of self-change: on the one hand, this offers some degree of hope that people can get better even if they do not seek or receive treatment; on the other, this knowledge can instil a sense of false hope and/or lead to the mistaken assumption that this approach works for everyone (which has implications for service delivery and insurance models).
Both studies take seriously the voices of individuals themselves in defining recovery. Though Vandereycken does define recovery in a rather medicalized way, the article itself highlights the importance of attending to people’s active roles in their recovery processes. Woods, too, notes the agency of her participants, who together with supportive loved ones attained wellbeing. Misnomer aside, the idea of “spontaneous recovery” offers up a lot of food for thought about ways in which we can work toward valuing different pathways to a place and sense of wellbeing amongst individuals facing various social contexts as they move toward “recovery.”
References
Woods, S. (2004). Untreated recovery from eating disorders. Adolescence, 39 (154), 361-71 PMID: 15563044
Vandereycken, W. (2012). Self-change in eating disorders: is “spontaneous recovery” possible? Eating Disorders, 20 (2), 87-98 PMID: 22364341
Thank you for another great post.
I am wondering if looking further into the cause or reason that the person attributed to their ED and spontaneous recovery rates might uncover some insight into who was likely to recover alone and who was not. I’m thinking that it sounds like people who attributed their ED mainly or even solely to sociocultural issues such as desire or pressure to achieve a certain idealised appearance are those who mainly achieve spontaneous recovery. I wouldn’t be surprised if those who attribute causes such as trauma, or felt that body image was NOT a significant factor in their illness, found it took longer and they needed clinical help. I have nothing to support or back up this – it’s just a musing. I am thinking that those who attribute an external cause might fight their disorder in a different way to those who attribute it to an internal cause – sort of similar to external and internal locus of control and how they can affect behavior and attitudes.
I definitely agree that there is incredible variability in recovery – I still am yet to find two people with eating disorders that are alike after almost two decades of encountering them in treatment settings or in the online ED community! It used to frustrate me no end that the same cookie-cutter approach was used on everyone and that if it didn’t work, the method of treatment was not questioned, rather the person themselves. I’m glad that there are beginning to be more varied treatment approaches.
I agree we need to question the spontaneous nature of spontaneous recovery – my own experience (although I am far from recovered, I have come a long way) is that a great deal of work can be done over a very long period of time with seemingly no improvement or change, and then it starts to ‘add up’ and become more visible, often appearing as though the person made a sudden turn-around. It’s only in hindsight that I can see that when things began to improve for me it wasn’t solely a result of the most recent work. In fact the most recent work was simply the final piece of a section of puzzle that I’d been gradually piecing together, despite being unable until that point to actually see much of a picture developing.
Recovery is so tricky to define. I agree that there needs to be at least a couple of years without behaviours. A lot of people that I know have periods of what they call ‘recovery’ (which is probably more accurately termed ‘remission’) and ‘relapse’, and in the remission period they are sure they are recovered, ED is gone, behaviours are gone, they are never going back. And then they relapse. This is another reason at least a couple of years straight with no behaviours is important – cycles of remission and relapse are not recovery in my opinion, although it’s a heck of a lot better than being in relapse or constantly unwell.
Finally, I felt deeply sad while reading this, thinking of the many people with ED’s who may never get any clinical help and may not even realise or admit to having an ED. I suspect that many ‘first presentations’ of ED in much older people are in fact someone who has had their ED for many years and a period of greater stress has worsened things to the point of medical intervention. I am thinking that despite recovery being possible, people with ED pasts will probably be vulnerable to relapsing for the rest of their lives.
Thanks for reading & commenting!
I think you make a good point about there maybe being a link between people who feel that sociocultural factors contributed to their eating disorder in a major way and those who recover without treatment. It makes sense- those things might potentially be more mutable (e.g. by moving toward a more supportive environment, etc.) than other factors, though we do still live in a culture that promotes restraint while peddling excess. It would seem that in Woods’ article this was this case: her participants reported strongly sociocultural contributing factors in the development of their disorders that supportive others helped them to navigate in recovery.
Also a good point that “a great deal of work can be done over a very long period of time with seemingly no improvement or change, and then it starts to ‘add up’ and become more visible, often appearing as though the person made a sudden turn-around,”- YES. It can be hard to tell what is work toward recovery for different people, too, I think, depending on their goals and struggles and the variability there. I think the word “spontaneous” is quite the misnomer.
I’ve been thinking a lot about the difference between behavioural and emotional or attitudinal relapse, lately. Is it possible to have one without the others? Do you think there is a possibility that someone could be recovered if they still occasionally had symptoms, but felt happy and well in their lives? Alternatively, would it be “recovery” if the thoughts and feelings were there but not the symptoms, years later? I’m not suggesting either is the “right” answer, I’m just honestly curious- I think this is where eating disorders and recovery in particular are so complex, and multifaceted- this intertwining of behavioural, emotional and attitudinal factors that makes defining recovery difficult, especially among individuals with different social contexts.
I too felt sad about those who don’t receive the help they need and desire. I think it is all too common for people to feel “not sick enough” to seek treatment, or to feel that the types of interventions available don’t jive with their personal or cultural preferences. This is such a huge part of why I want to work toward developing systems of support and care that recognize the complexity of eating disorders and the vast variability in recovery outcomes. I know “more research! more research!” is not always a popular response, but I do feel that more research seeking out individuals’ experiences with (and in the case of this particular non-treatment-seeking or pre-treatment-seeking group, without) treatment is needed to really determine ways we can better serve and support individuals with eating disorders.
Hi Andrea, thank you so much for your response!
One thing I know for sure and know even more as the years go by is what a tricky bugger ED is. (I hope this comment doesn’t get auto-spammed for that word lol, some blogs do!) The other night a friend and I likened it to a ‘whack-a-mole’ game where you have a series of holes, something comes up out of a hole and you hit it, but then it comes up out of another hole instead!
I, too, have thought a lot about what is ‘recovery’ – as you asked – does the absence of behaviours but still having thoughts count, and does having some symptoms but being happy and well count? It’s a hard question!
Personally I think that ‘remission’ is better a term than ‘recovery’ to describe the scenarios you described. For me, recovery is just that – totally recovered – “FREE”. Which I have to admit is fairly ‘pie in the sky’ – something I may have put on a pedestal. I do though accept that ‘in recovery’ means different things to many than ‘being recovered’ – that it can mean being on the journey towards one day being recovered. I think for many people, especially those who have been chronically ill, being
in recovery is realistically what they will achieve – acknowledging that it is a constant, every-single-day-being-vigilant process. I know this is rather pessimistic but at the same time I think the all-or-nothing thinking of you are either ‘recovered’ or you are not, is dicey. We are human, after all. I think knowing that it’s a process, and it’s not linear, helps people pick themselves up and keep going after a stumble or even a face-plant.
I’d be really wary for someone who was happy and well in their lives but still showing symptoms unless they were relatively rare, having known a couple of people with eating disorders who truly, honestly thought their lives were fine, they were happy with how things were, they were being ‘healthy’ and so on – and yet were on the cliff’s edge of dropping dead! On the other hand, as I said before, we are human – and what human being without an eating disorder doesn’t from time to time have a slip with food – comfort eat, overeat, forget or decide not to eat a meal and so on? I think it depends, as always, on the person and the situation.
Maybe it’s truly the best that a person can be, and an ongoing process – because I agree that it’s so multifaceted and that being entirely symptom free is only one small part – ED goes so much deeper.
I’m with you about those who feel ‘not sick enough’. In fact just last week I begged a friend who was dangerously ill to visit the doctor because she was convinced she was ‘not sick enough’ – she is now in hospital and still doesn’t feel ‘sick enough’ to be there. It seems to be a running theme with people with EDs that they don’t ever feel sick enough and feel guilty to then ‘take up a bed’ if they are treated. I know I did. I seems to be a deep, ingrained unworthiness, an inferiority complex, in some people. I think it’s not been helped by the attitude that is shown to people still in hospitals here a LOT – that they should just pull themselves together, they are wasting people’s time. My friend was treated this way when the doctor sent her to hospital – the doctor is a top ED specialist, and yet the doctors at the hospital were quite dismissive of my friend despite the fact that she WAS very medically ill with heart problems. A couple of months ago, a different friend, also with heart problems, and also sent there by an ED specialist, was dismissed and nearly discharged home dangerously ill. She was also introduced to the next nursing shift in emergency – in front of her – as a ‘hungry and a chopper’ (anorexia and self harm). I myself have encountered really unhelpful attitudes myself, have been told off for wasting time and told to go home and eat a sandwich. It’s not surprising that people become worried about being ‘sick enough’ to reach out for help when so many who are dangerously ill are treated in such a way. There’s also the fact that eating disorder services are so stretched that only the ‘sickest’ few are able to be admitted – 5 beds for approx 4.75 million people in our state for example! Unfortunately medical professionals – even eating disorder specialists – still perpetuate the myth that weight measures how sick one is rather than state – both my friends are not emaciated, in fact, one was within the healthy weight range, but both were dangerously ill – and they were treated the way they were, so it’s no wonder they both still struggled with the fact that they were dangerously ill when they were finally being treated for their medical state, and it’s no wonder again that both of them felt guilty and unworthy of initially reaching out for help. It’s a sad state of affairs. I wonder how many have died because they didn’t feel ‘sick enough’ to get help yet. 🙁
I strongly agree with you about more research – MUCH more research – and finding different ways to support different people. I think cultural factors are factored into eating disorders far too little, in fact, I think eating disorders in many non-Western countries are missed because people are looking for eating disorders in a Western presentation, rather than how that culture might express an eating disorder. We forget that different cultures have entirely different ways of expression, beliefs, ways of relating to one another, and so on. It also needs to be taken into account with treatments – as well as as you said, personal preferences. For too many years the model has been ‘one size fits all’ or should I say, ‘all must be forced into a single size’.
I better stop, otherwise I will have written a blog post for a comment 😉
Wow! Epic comment, I love it.
The “on a pedestal” thing is what I fear about many representations of recovery. Particularly how this might make some people who are doing so much better than they were take this idealized version of recovery to mean that they aren’t doing a good enough job at being recovered. I found that my participants spoke about this a lot, and some mentioned that they had to let go of this idea in order to actually get to a better place that they would consider recovered.
I’m curious about your preference for the term remission. To me, this speaks to a very medicalized version of recovery- I think because it sounds a lot like how one would talk about a disease like cancer. I can see how it would speak to people, though, especially if we’re talking about absence of symptoms with remaining thoughts etc. or absent thoughts with remaining symptoms, as opposed to being completely “free,” as you say. What I find arbitrary, in the literature, is the choice of how long one has to have been free in order for recovery to “count.” Because of the complexity and variability, I always feel uncomfortable with putting a number on it. Making things still more complicated is that I think sometimes recovery can sneak up out of a more “remission” based place- if we’re defining recovery as including not thinking about the disorder, I would think it would happen gradually and not be this kind of “aha” moment in which one could say recovery has occurred. Agreed, too, that we are all human and even “in recovery” or “recovered,” people have moments where they rely on long-ingrained coping mechanisms.
It’s so disappointing to hear about your and your friends’ experiences with poor standards of care. It is astounding how many misconceptions persist about what eating disorders “look like,” even among those who treat eating disorders. Again with the need for more stereotype-busting information out there regarding the various presentation and course of eating disorders. I feel like a broken record when I say it is all in the complexity and the shades of grey, but there you go. Also agree on the sorry state of available (and accessible/affordable/appropriate) treatment, and that is a whole other can of worms to open!
Thanks again for commenting… I appreciate you taking the time to engage 🙂
You wrote,
“I’d be really wary for someone who was happy and well in their lives but still showing symptoms unless they were relatively rare, having known a couple of people with eating disorders who truly, honestly thought their lives were fine, they were happy with how things were, they were being ‘healthy’ and so on – and yet were on the cliff’s edge of dropping dead!”
Well, I’m not close to dropping dead (I’ve maintained a healthy weight for >1.5 years), but I’d fit into the category of someone who is really happy and yet shows symptoms, and, depending on who you ask, they are not all that rare. (I have pretty small/self-contained binge/purge episodes a few times a month, but essentially no caloric restriction in the last 1.5-2 years.)
I’ve always found it incredibly dismissive when people suggested that I must be deluding myself about my happiness because I am clearly still symptomatic. Yeah, no. I’m not. And the reason is simple: There are many, many factors that contribute to my quality of life (work satisfaction, romantic relationships, friends, overall physical health, family things, etc) and all of them are freaking amazing. The fact that I still binge/purge once in a while just dont’ carry nearly as much weight (har har) as all of those other things. Nevermind that, frankly, I like bingeing/purging once a while, so I can’t even say it is wholly a negative thing (though, no doubt, it is definitely not a wholly positive thing either, and I do hope it will decrease and slowly fade out from the picture completely).
I think we have to be really careful to NOT be dismissive of others’ experiences (and I have to be careful of it too, and I’m not always good with doing that either) or to extrapolate our own experiences onto others. I am always reminded of a group facilitator who once said that having an ED and being in a romantic relationship cannot ever truly work because it is like being in a relationship with three people and, according to her, that’s one too many. I always laughed at that: What a monogamocentric perspective! Perhaps those were her experiences (and she had had an ED in the past), but they were not mine.
Before reading this, I had assumed that most or all recovery happens without treatment.
In the eating disorder memoirs I have read, patients in treatment seem only to be interested in tricking the system (e.g. drinking lots of water or putting heavy objects in their pockets before weigh-ins), pulling feeding tubes out of their bodies, sneaking food in, lying in their food diaries, etc.
I’ve never read anything that’s given me an impression that treatment works. I have never received treatment. And I am recovered. My bulimia was extreme. I didn’t receive any particular support. My family is not close. The eating disorder just went away after seven years.
I agree with how you felt about treatment – in the ED unit I grew sicker and sicker over the years because the more they pushed me, the more I pushed back, and no matter how strict and vigilant they were, I managed to find a way around it every single time. It meant that treatment for me was simply about them keeping me alive, barely. It’s only been in the last few years that I have managed to stay OUT of hospital, and in those years I’ve come a lot further than I ever did IN hospital – because I have a therapist who ‘gets’ me and who helps me, I have finally built a circle of support who truly care (rather than a treatment team that barely remembers my name), and I have more important things to live FOR, rather than, in hospital, life narrows down to the hospital and what’s happening, so life becomes 100% ED. I personally learnt every single trick I did to make myself sicker in hospital, and I personally feel that unless the person is very medically ill, hospital needs to be a last resort, and that residential treatment of the kind that I see advertised in the USA needs to be rethought so that it isn’t so much of a huge population of people with EDS all together. Unfortunately it DOES become ‘ED university’. I think a better way would be having teams of support who can go to people’s homes and support them in their own environment – and help them create a team from their friends and family or community to continue to support them in the hours that the treatment team can’t be there. People to do meals and support people after meals, and for those who need 24/7 support (eg bingeing, purging, exercising), a roster of people to stay with them around the clock.
I guess this is another of those pie in the sky pipe dreams though 🙁
and, well done on recovering, especially alone 🙂
I’d like to take credit, but it just happened. Thanks, Fi 🙂
Thanks for commenting, Natasha- it is always interesting to get different perspectives on recovery/ways of getting there. I think that it is possible that there is some sensationalization in some eating disorder memoirs, but I am sure these behaviours do occur in some treatment settings. That said, good treatment does exist (though not nearly enough of it, or enough that responds to the complex and different needs of individuals with eating disorders) and I would hesitate to say that all people in treatment systems are interest in “breaking the rules.” I think that to suggest this perpetuates a dangerous myth around treatment resistance- though of course some people resist treatment via “tricking the system,” many do want to get better and some choose to do this in a formalized treatment setting. I think what the existence of these behaviours could indicate, instead, is a need to better attend to the diversity and complexity of eating disorders, and to provide support that meets these needs. Easier said than done, of course, but in an ideal world..
As noted above, much more research needs to be done. I would particularly like to see the rate of relapse after a spontaneous recovery/non-clinical treatment of an ED. I say this because though I’ve dealt with my ED for half my life, I experienced periods of recovery that happened without treatment, but I would almost always relapse and honestly, the ED was never completely gone (thoughts were still there, preoccupation with food and exercise didn’t cease that much). Therefore, (for me personally) treatment with psychotherapy and nutritional counseling was necessary to put me on a path to lifelong recovery, not just in a mini-recovery period where I would fall off again. Perhaps this is also different because of my EDNOS/OSFED where I’m in this grey area of not being thin but still suffering quite immensely…in other words, no one is jumping in to help me, I know I need to get help myself.
Great post – as always!
anedfortherestofus.blogspot.com
Thanks for the comment, Jill. I think that it would be really interesting to look at relapse rates after untreated recovery- again, so difficult to study this population but very worthwhile, I think. I think that one of the most difficult things about studying recovery and mechanisms of help in recovery is that it is rarely one thing, and often people try so many different things as they try to recover. At different parts in my own journey, different things were helpful. The same thing that might feel helpful at 14, for example, might feel paternalistic and breed contempt at 21, or 30, or 40. Again with the need for complex and multiple treatment and support options, in my opinion. It can be hard to disentangle what was most helpful when it could be a cumulative effect of years of trying different things to better or worse impact. In his article, Vandereycken comments on how one of the reasons self-help is so hard to study is that it is often offered as adjunct to more formalized treatment, so it is relatively hard to isolate a sub-population to study who have used only this method.
Anyway, thanks again for commenting and for reading the post!
“At different parts in my own journey, different things were helpful. The same thing that might feel helpful at 14, for example, might feel paternalistic and breed contempt at 21, or 30, or 40.”
Absolutely! And even re-reading my own comment, perhaps self-treatment worked for me at the time being, but obviously was not a long term solution for me.
I don’t get who thought it was a good idea to equate (or call) recovery achieved with limited or no medical/therapeutic intervention with “spontaneous” recovery? If there’s nothing spontaneous about it, why call it that? It is incredibly misleading, and I think, a slap in the face to those who worked hard to achieve recovery with limited or no intervention.
The place in recovery I’ve achieved thus far has been with almost no intervention. I had brief OP Tx when I was 15, and it did nothing except restore my weight for a brief amount of time (even though it was 100% my own volition. I sought out treatment, and even went as far as getting a new doctor who’d refer me to get diagnosed). All the work I did on normalizing my meals, integrating more foods, increasing my caloric intake was on my own. Well, without professional help I should say. Normalizing and maintaining my weight has been on my own, too. The last time I saw a dietitian was when I was 15, and she was utterly useless. The last time I saw a medical doctor was a few years ago for a completely unrelated issue. My recovery, however, sure as hell wasn’t “spontaneous.”
It frustrates me that we lump all eating disorders together when we talk about the issues of recovery. It is misleading to compare recovery from very low weight anorexia nervosa with mild bulimia nervosa. It is misleading to ignore age and duration of the disorder, too.
This whole thing just frustrates me.
Agreed; seems rather belittling to presume that absence of clinical intervention=”spontaneous.” I think it does indeed negate the hard work that goes into achieving recovery/remission/a more happy life without intervention. It makes it seem as though people couldn’t *possibly* help themselves, neglects personal agency, etc. etc. and, I think, plays into the myth that no one with an eating disorder wants to get better, which I think is among the most problematic and pervasive myths around eating disorders. Of course some people want to get better; whether or not they seek out or “respond to” treatment is another issue entirely and so dependent on about a million other factors including (but not limited to) life stage, social support systems, and broader systemic issues.
Good point about the lumping together of different eating disorders in recovery discussions- this is pretty common, I’ve found, though some articles do talk about one disorder in particular. Now that you mention it, it might have been worth doing a post about articles that do consider different eating disorders & recovery… one about bulimia recovery comes to mind… but thinking people might be getting burnt out on the recovery series so perhaps that is something to blog about at a later date!
What else really bothers me, sorry, this DOES warrant its own comment, haha, is that people assume that happiness is conditional on full or almost full ED recovery. I mean, why is it so hard for people to understand that other things in life might actually be a lot worse for the person or play a much larger role in their subjective quality of life than the eating disorder? As far as the “weight” of various factors that play a role in how one feels about their life and/or their happiness, the ED may not be the most important part. This is something I feel many people miss.
I find it very, very dismissive (as we’ve talked many times over) when people suggest that you cannot be “truly” happy unless you are fully or almost fully recovered. Ironically, this never comes from good physicians/therapists and it almost always comes from people with a history of EDs. Hmm.
This is one of the things we’ve talked about that I really think has opened my eyes the most about recovery, this conflation of happiness and “full recovery.” You know, this also makes me think (though perhaps this is an obvious corollary) about the fact that “full recovery” is also not some silver bullet to ideal and perfect happiness. So, one could be happy without having reached some externally validated “full recovery” and one could be considered “fully recovered” without actually being happy. It’s just not that simple.
Absolutely! There was a brief time when I was, on paper, more recovered than I am now (as far as ED behaviours and ED-related psychopathology) and yet I was miserable. I know I am not alone in my experiences.
That’s why I question when metrics of recovery focus on things that are external to the ED. Correlated, sure, but not completely linked. My own goals in the last few years centered around improving things in my ED that would most improve my quality of life. My personal focus — which was nice, since it wasn’t a focus of my treatment team or anything as I didn’t have one — was on improving what bothered me most and affected me most as far as my life OUTSIDE of the ED was concerned. It wasn’t focused on working toward being symptom free, for example, because I didn’t (and don’t) feel like that is my main goal as NOT being symptom free doesn’t really affect me all that much.
So, for example, restricting really fucks with my mind. I hate it and it usually gets bad REALLY quickly. So, my goal has been to not restrict calorically or food-wise; it has been to expand the foods I am “okay” with eating. My other goal has been to maintain my weight and to simply eat more. The reason is that increasing my caloric intake and increasing the foods I am okay with eating go really far in improving my social functioning. I am not really anxious about going out for food, for example, because I am okay with eating more and eating a wider range of food. So, that’s been an important goal for me. My own goal.
Bingeing/purging, on the other hand, doesn’t really bother me. I have specific goals as far as that’s concerned (e.g., not going out to specifically BUY binge food, because that tends to get worse really quickly and escalate into crazy b/ping that DOES really start affecting me) to make sure that it doesn’t get to a stage where it once was and where it really did rule my life and negatively affect my QoL. But that’s a specific sub-goal. So, different “types/kinds” of b/p’s affect me differently, as do different “types/kinds” of restricting (e.g., caloric, foods, skipping meals vs. reducing overall intake, etc). So just saying oh, well, you are not 100% symptom free, or well, you are 100% symptom free overlooks that different symptoms affect people differently. Sometimes, very, very differently.
I think it is really dangerous to sell people the idea that full recovery or even substantial recovery is necessarily better. It is not. It is not necessarily sunshine, lollipops, and rainbows. And sometimes, not even close.
I say this to you a lot but I really do find your honesty about all of this really refreshing. I’ve been thinking a lot lately about the imperative, as a (mini?) advocate for eating disorder awareness (I say mini advocate because the majority of my “activism” is kind of hashtag activism and conversations with people rather than anything on a grand scale) and body acceptance/anti-weight stigma, to come off as if I am perfectly satisfied with myself all of the time. I don’t think there is enough room to express the “normal” fluctuations in self-acceptance and positivity that I am sure we all experience- particularly in recovery-oriented circles, any admission of feeling not-so-awesome risks being taken less seriously in recovery. Which is funny, because as someone who experienced perfectionism as quite tied up into negative behaviours, imperatives like these don’t leave me feeling great or real. So, though the vast majority of the time I am a very happy and healthy human being, there are times when I don’t 100% love myself. And I really do think that’s ok; I don’t think it reflects poorly on my state of “recovery.” But being open about that feels so risky, sometimes, because I hesitate to put anything out there that would a) discourage people seeking recovery or b) make people take me less seriously as an eating disorder researcher and/or advocate. Tricky. It seems so simple to say but I think there needs to be way, way more room for acceptance of variation in what someone feels is necessary for a happy life, eating disorder or no eating disorder, recovery or remission or shift-of-priorities.
Something else your comment brings up: I think the binge/purge thing as “latent symptom” brings up an interesting tension. It is so much easier to clinically define this as a symptom than it is to define restriction or excessive exercise. I mean, yes, binge is subjective- purge less so; but on the whole, I think it is easier in some ways for people to subtly restrict/over exercise without it being flagged by a clinician as indicative of latent pathology. I hope that doesn’t come off as if I’m saying that people are “getting away” with symptoms- that is not at all my intent. I’m just meaning to comment on the kind of judgment that surrounds the continuation of occasional binge/purges that you mention having received skepticism in recovery communities about, whereas if someone who didn’t find binging/purging to be a good coping mechanism and experienced restriction this way were to subtly restrict or exercise a “normal” amount but with an “excessive” attitude it might not provoke the same kind of automatic “but you couldn’t possibly recovered” type reaction. I don’t know if I explained that well at all, just some thoughts I’m in the process of forming…
All of this to say: why are we so uncomfortable with letting people experience (and get to) recovery in different ways?
I appreciate this comment and this whole discussion so much. On the first note, I have been through inpatient/ residential treatment numerous times, with varying levels of success, and several times, I did really want to recover but felt unworthy of being there and felt this drive to rebel against everything I was being told to do because I was so uncomfortable being in my own skin that I could barely tolerate any discomfort at all. The past few years as an outpatient, I still see a treatment team, and while right now, I’m not at my lowest level binge/purge-wise, my anxiety is under control, my depression is under control, I am able to socialize again and have learned how to have a conversation without becoming unbelievably nervous and awkward, and I have a job that I absolutely love. I have transformed from a college student with no friends who spent all my time alone binging and purging in complete shame and depression, suicidal, and panicking to a young adult who works full time, lives with several friends, and generally does a decent job managing at life. I have ups and downs but most days I feel pretty okay, and that gives me a sense of serenity that makes even “normal” days where I just run errands or something seem amazing. I would say I am happy, and while I would like to move forwards with my ED recovery, I am eternally grateful for the progress I have made and think that, had I spent all the past few years putting my eating disorder recovery first, as my inpatient team had suggested at the time, rather than returning to school and finishing my degree and pushing myself to face my anxiety at work every day, I would have allowed myself to avoid facing my social fears and probably wouldn’t have reached this place in my “outside of ED” life. I’m not just “a bulimic,” I’m also a nurse and a runner and a friend and a sister and a daughter and I am much better at all of these roles than I ever have been before, eating disorder notwithstanding.
Anecdotally, the experience you describe about inpatient/residential seems to a relatively common one; I think there is some literature where researchers attempt to explore this but I think it can be a complicated experience to really explore “empirically”- the tension between wanting to recover but not being sure where you fit in the realm of eating disorder experiences and trying to overcome discomfort in what can be experienced as a very uncomfortable situation (for a number of reasons). Congratulations on being where you are- I don’t think we do enough to let people know that while being symptom free might be a goal for many, there are other elements of this huge “recovery” monolith that deserve acknowledgement- like the things you mention (loving your job, having your anxiety under control, etc.). Like you say, the eating disorder isn’t the only part of your identity worth remarking on. Thanks for the comment!
Hi, I’ve been in ‘spontaneous’ recovery from BN for about 6 months now but as Tetyana so adeptly put it, there was nothing spontaneous about it. I really had to work my little tush off to get to this point. It involved a lot of introspection, dedication, motivation, planning, commitment, drive, and determination. On the other hand, I also really have no idea how I did it. It was a lot of trial and error.
About 6-7 months ago, I finally decided that enough was enough and told my mom, best friends, and fiance (who I’ve been living with for 3 years and didn’t have a clue that I was binging or purging) about my BN. I think that telling them really did make an enormous difference in my recovery and I would agree that this was the ‘turning point’ for me. Their support and empathy was crucial to my success. My fiance has also helped me plan meals (yes we’ve been doing this for 6 months straight now!) every day and every week and that seems to take away a lot of the fear/indecision about what to eat and how much to eat which I think was one of my own personal triggers (though I certainly understand that this is something that may not help everyone).
I’m happier now where I am then I have been in quite some time but after reading this article I am left wanting to know more about the relapse rate of those who don’t go seek clinical treatment. Should I be waiting for the other shoe to drop? Should I be trying to go seek professional help in some capacity (maybe just a therapist) as a preventative measure? If I wanted to, would it even be possible given how limited access is?
I wonder if the reason why researchers sometimes refer to it as spontaneous is what you’re describing… though it takes a LOT of work, it can be hard to put your finger on exactly what it was that got you to a place of wellness. It’s also great to hear that you’ve had such excellent support throughout your experiences!
I wonder whether the relapse rates of those who don’t seek treatment are really very different from those who do? Again I think this might be incredibly difficult to measure and compare, partly because recovery might be differently defined in these contexts (e.g. what someone who did not have clinical encounters on their way might see as recovered might not be considered “clinically recovered” in terms of symptom remission and also the difficulty of “can you be recovered if the ED was not diagnosed,” which is a whole other barrel of fish…) and partly because of really varied pathways to treatment and/or recovery. I certainly wouldn’t say you should be waiting for the other shoe to drop; your experiences are your experiences, and if you feel happy and well in your life who is to tell you you need to be doing more/differently? Of course, seeking professional help/a therapist is an option if you feel like that would be helpful to you- I’m always a proponent for reaching out for the type of support you feel would help, be that professional or personal.
I’ve been hospitalized for an eating disorder over 50 times, at least five of which were for over six months, once was for two years in a state facility (I was told eating disorder units aren’t “revolving door” units- turned out to be true!) I think the sad truth is that treatment was obviously not working for me, and no one knew what else to do, so they just kept doing the same thing- I don’t think doctors can flat-out say, “we’re out of ideas, sorry about that. Good luck!” I don’t know why it didn’t work for me- I have “complicating factors,” but who doesn’t? I’m not sure if there’s a study on that somewhere, why some people basically stay sick despite a lot of treatment?
But basically, I ended up abusing drugs and alcohol and getting into AA, and then left traditional treatment. With the AA program of recovery and a general life change and working with a sponsor, my eating disorder symptoms lessened, and I felt happier and sort of functioned, and none of those things had ever happened before, even in the slightest. My symptoms are actually much better now, I go days and occasionally weeks without an issue- I didn’t go one day without symptoms until I left traditional treatment… I do consider this a “spontaneous recovery,” if that means a DIY recovery, basically- something I really like in AA though is that people often refer to it as a self-help program, but people in AA refer to it as a mutual-help program, as we all help each other.
I can see why this isn’t a widely researched or discussed topic among health-care professionals. First of all, I think it’s a liability for them to tell a patient who could get into medical danger that they should give up on treatment, or not go to treatment in the first place, but also, these doctors are running businesses, not charities, and they’re not volunteers.
But yeah, I think the dirty secret is that treatment just often isn’t effective. I wonder if recovery in these places is really caused by the treatment there, or maybe some of it could also be attributed to “spontaneous recovery” during the time at the treatment center? I wish there was a lot more research on this.