To make things even more sticky, some of us tend to experience nasty mental backlash if we admit to any compliance at all. My head literally doesn't allow me to say out loud that I want to get better sometimes- not without dire psychological consequences. Sometimes I think I don't want to comply- other times I want to but am too terrified to admit it.

For the first time in my life, I had a lovely experience with my doctor. Yes, it was just my OBGYN, but the factor of my year-long amenorrhea made it necessary to discuss the disorder, and he was awesome. I wrote about it here: If I Could Menstruate, by Nicole Marie Story.

Very well written article, girlfriend.

Brilliant post, Carrie :)

The vast majority of people with AN, at least, are either unaware of the seriousness of their condition, or they struggle terribly to change their behaviours around eating (and exercising and purging in some cases).

From a personal perspective, as a child with AN I lacked insight into the severity of my condition and was convinced I didn't need treating. That led professionals to get angry with me, even threatening, and to brand me as a naughty girl who wanted her own way.

When AN continued into my 20s and 30s I became fully aware that I was sick, but found it far too distressing to eat more and/or exercise less. To change my behaviours filled me with such dread that I felt the world was ending. And so professionals assumed I was just 'chronic'.

What has helped most is being seen by professionals who understand that AN is NOT a choice, who validate my feelings of fear and empathise, help me to eat without fear and encourage me with recovery strategies.

I'm glad someone has finally addressed this topic. Yes, I wanted to get better. But *anorexia* did not want me to get better, and every time I have attempted to recover, the eating disorder would come roaring back and make it damn hard for me to be a compliant patient. I know I am a difficult patient. But if Beaumont kicked me out every time I was difficult, I would have never found the courage to finally fight my eating disorder and work on recovery.

I am very fortunate to have a treatment team made up of an ED psychiatrist, family doctor and dietitian, all of whom are nonjudgmental and therefore do not buy into the whole noncompliant patient viewpoint.

I feel something to take into consideration too, is that treatment facilities, therapist, counselors are in the business of making money. If they can't figure out how to help someone, they lable them non-compliant, its easier and looks better for them when calculating their 'success rate'. And if you are going to pay thousands for treatment, who wouldn't ask what the success rate is?

This post has made me really thankful for the people at my treatment program. I have thrown some doozy tantrums at home over not wanting to follow through with things they've asked me to do. And I come back and tell them that when they ask how it went. And we laugh about it and explore WHY I'm so hesistant to complete that task, take that med, etc. Sometimes, with their help, I'm able accept why it's important that I follow through and other times, they are able to accept that I'm not ready and/or able to follow through. But we agree that I'm learning during this recovery process and with learning can come some big emotions which need understanding rather than labels and being discarded. Thank you for reminding me to be more grateful for the program I'm in.

Thank you soooooo much for this blog entry! I think it is true, that when ED patients aren't doing what the treatment providers ask, then the patient is blamed and given this label ~ they make it the patient's fault. Rather than kicking out people from programs, it would make so much more sense to view this, as you have mentioned, as a symptom, and instead of blaming the patient, find ways to actually help the patient rather than giving up on him/her.

I remember a dietitian saying to me while I was in hospital that "if I really want to do something then I will do it." That comment was so unhelpful to me (did she not recognize that I had an ED screaming at me!!).

Thank you so much for this. It gets at the most basic problem between older thinking and new, really: whether the thoughts are causes or symptoms.

I say symptoms, and as you've described we need to see them that way and understand that compassion and effectiveness require that we remain focused on the goals even when the patient cannot: lovingly, firmly, and without blame or pity.

Anon, sorry, but that quote made me want to laugh. I mean, I really want to fly or breathe underwater without a scuba tank. Hows about you invite that "helpful" RD up on to the roof of the high rise hotel I'm currently staying in...

My sense of humor is a wee bit warped, but that statement really irks me.

Love this post, especially the phenomenon of "parking lot" motivation -- my therapist and I have talked about it in almost those exact terms, many times.

My thought about non-compliance is that if you look for it, you're going to find it, with just about any disease -- especially mental illness. And for that reason, there shouldn't be such a stigma attached to it. For every ED sufferer I've ever known, "non-compliance" has been a defining factor of the disease.

While I was only "kicked out" for noncompliance once, I've unfortunately been punished for it in other ways, several times: shamed, isolated from a group, cut off from parents, etc. None of those things incentivize a person to do better; they merely make them feel alone, indignant, rebellious, and incurable. And like treatment staff is working against them.

Also I had to smile at your story about the omelet and hash browns. I once got creative and hid a pancake in a CD case (back when people still listened to CDs) -- though that was on a psych ward. I never would have made it out of the dining room if I'd tried to pull that in residential.

Carrie, I wish every eating disorder facility my daughter has attempted treatment in would get a copy of your post. Many therapists and staff in these facilities simply do not know how to treat someone whose disease is in full rebellion. Others do not have the qualified staff or facilities to be able to work with a person in a kind way. AJ's third paragraph (above) hit the topic on the mark. Unfortunately, often the behavior of those diagnosed with an ED AND Borderline Personality Disorder do make the "myth" very difficult to argue against, to their detriment. Someday, BPD will be better understood as also a biologically based mental illness rather than a "personality disorder." When that happens, and when BPD is recognized as being more common in conjunction with ED than many think, maybe more ED residential treatment centers will be equipped to work positively with people cursed not only with an eating disorder but also with BPD who end up being judged to be noncompliant and ejected/rejected.

Very well-said, as always! I think another factor that complicates the doctor/patient dynamic in the particular case of EDs is the tendency to assign fault. Obviously, a *good* doctor wouldn't do this, but in my experience, it's far too common for medical personnel to view EDs as a "choice", whether in getting sick or in not getting better. Eating disorders aren't seen in the same was as other illnesses, where blame would never be assigned; even in the mental illness realm, EDs are rarely given the same weight (no pun intended) as other disorders. I think this is a huge part of the "noncompliance" misunderstanding.

Also, I believe a big issue with noncompliance is the fear that it's going to spread through a facility. If someone is hiding food, saying the "wrong" things in group, and sneaking exercise, staff expect the competitive nature of EDs to kick in and everyone to be "triggered" into "noncompliance". It's easier to kick out the "bad girl" than risk her bringing others down...or something.

And because of all this, those who need help the most often don't get it.

brilliant insight. this is a keeper

I'm not usually into name calling, but since the medical community likes it so much, how about instead of 'non-compliant patients' we try 'incompetent health professionals'.

Carrie,

I'm the anon. who wrote about the silly comment said to me by the dietitian. After I read your comment, I had to laugh too! (I'm one for a very sarcastic view on things as well...)

And get this ~ that dietitian is a specialized ED dietitian who has worked in the program I used to go to for years. *shudders* Yeah, maybe if I really want to win a million dollars, then I will be able to do that too, or maybe if I really want to fly, if I put to my mind to it, that might help as well! lol

Thanks Carrie for pointing out the ridiculousness of that comment. I needed to laugh today.

I have to step in a bit here and say that, although it is unfair that a non-compliant patient is asked to leave treatment, there IS a rationale for it that goes behind the treatment team failing to recognize that ED's are not a choice, wanting to "punish" the patient, etc.

I think we are forgetting that ED treatment usually occurs in a GROUP setting and the team is responsible for the well-being of the GROUP, in addition to the individual. It can be problematic and extremely triggering to the rest of the group if a patient is struggling to be compliant with the prescribed treatment -- especially if everyone else is having to meet the same standards. This can also generate hostility of the rest of the group toward the patient -- which is extremely unfair as the patient IS sick. Therefore, the rationale for asking a non-compliant patient to leave is twofold:

1. To protect the rest of the group and maintain a positive/healthy group atmosphere of mutual support in which there is the understanding that urges/symptoms/weight loss while IN treatment with not be tolerated. One person cannot be allowed to affect the recovery of say, the other 13 people who are also struggling.

2. To protect the patient who is non-compliant. Although the treatment team may recognize that these are symptoms of someone who is ILL and not being willfully malicious, the group is usually a little less tolerant. When the combined hostilities of the group are turned upon the non-compliant patient, the therapeutic atmosphere becomes toxic to that patient and -- similar to schoolyard bullying -- staff intervention is not going to help when tempers/tension is high. The more "chances" the non-compliant individual is perceived as getting, the greater the hostility/tension.
** Note, I have been on the receiving end of this group hostility and it is one of the worst things I have ever experienced -- this is DESPITE the staff trying to cushion the blow

Also, if a patient is continuing to be non-compliant in a program, having symptoms, losing weight, purging, cutting, whatever -- TREATMENT IS NOT WORKING. It is NOT OK for the staff to continue to treat this lightly and attempt to "reason" with the person/identify as to WHY they are having the symptoms. The symptoms must be stopped. PERIOD. And if they are not able to do this in the current treatment setting, then perhaps the treatment team/patient needs to look toward discharge/alternative options.

In conclusion, I think we are being black and white here. Asking a non-compliant patient to leave a program is not the team "blaming" the patient and nor is it a failure of the patient. It is simply recognizing the limitations of the current treatment in helping that patient and the level of illness for that patient.

** That said, a certain level of "slips"/symptoms are always allowed/tolerated as no recovery is completely smooth. I am merely saying that at a certain threshold, the patient MUST be asked to leave for the good of themselves and the group.

Thank you for this. I have been so freaking non compliant in my time in treatment that i have trouble seeing myself as anything but a spoilt brat, looking back. I find it so hard to do what i'm supposed to do when it means doing the thing that most terrifies me in the whole world and copping the backlash of abuse from my own self. i'd rather cop anything they can throw at me rather than what the ED dishes out. it has access to the very depths of my mind and soul 24/7 and it never lets up. And the punishment the treatment team has dished out has been pretty harsh, i still am traumatised by some of it (restrained on my back in bed for weeks at a time, surrounded by my own vomit, still unable to obey them because what was in my mind was worse).
Ultimately i had to get to a point where 1. i had the strength to fight and 2. i wanted to live more than i was scared to live,in order to join them instead of fight them, and yet it's still hard. Right now i'm frustrated because I'm struggling to disobey my head and drink just freaking WATER to keep myself from passing out, how stupid is that?
HOWEVER what makes me furious is people who flaunt not using the treatment they are offerred, they don't have any intention of using it, and they play a game with the system. manipulating, causing endless drama, feeding off that drama. There are a few here, they bounce from hospital to hospital, and actually many of them identify as ED when in reality it turns out they don't have an ED, they have a personality disorder, and ED behaviours are something they ACTIVELY IMITATED for a short period of time because it suited them, was yet another way of creating drama and getting attention whether negative or not. These people cause so much damage - treatment teams seem to think that that's the way we ALL are. That it's not because we are sick, it's because we ARE attention seeking drama creating brats. And that makes it harsher for the rest of us.

SING IT SISTER.
As someone who has been asked to leave (re: kicked out of) programs for "noncompliance" I know this world all too well. Although, at the time I was probably grateful for the easy way out of a program I didn't want to be in in the first place.

I mean, when it comes down to it, if ED patients were going to be perfectly compliant, why would we need treatment in the first place?! It wasn't until this most recent round of treatment that I experienced support when I slipped in my behaviors. For the first time I "came clean" about hiding food (or whatever else I was messing with..) and had a real conversation about what was going on, didn't get in trouble, talked about how to perhaps stop it from happening again.

And my personal favorite incompetent professional quote is, "if you don't stop engaging in behaviors, you're not allowed to go to group or have individual therapy."
COOL. That will REALLY help the issue...

I love the analogy of the tumor that doesn't stop growing just because an oncologist gives it a stern talking to. Why do therapists think that telling the patient that ed behaviors are bad/dangerous is going to make her stop them? If it were that easy, if she really had control over that evil voice in her head that keeps telling her she needs to be thinner and thinner, she wouldn't be visiting a therapist in the first place. I don't understand why therapists take it so personally (and get angry) when a patient continues to engage in the ed behaviors. It doesn't necessarily mean that the therapist isn't doing a good job; it just means that this disease is really insidious and really difficult to cure. You definitely have to be tough and persistent to treat ed's, yet some (many?) every self-proclaimed ed specialists take a patient's struggles personally. And that makes the patient even WORSE, since now on top of all the other negative crap she feels, she feels guilty that she let down the therapist by not being strong enought/good enough to stop these ed behaviors. WTF?!? Therapists, ED Specialists: If you can't take the heat, get out of the kitchen.

Carrie,
great post. I think the idea of 'non compliance' can take the focus away from the treatement protocols. If someone is purging, losing weight, cutting in the assumed safe envirnoment of a hospital or residential treatment what needs to change is not the client but the treatment management.
24/7 Supervision, distraction therapies, pharmaceutical support, what strategies might help such distressed sufferers avoid harm. To me there can clearly be a specctrum of distress, not all sufferers experience ED at the same intensity. Some have not been as ill for as long, some can manage to eat once in care - they are released from the fight when responsibility for choice is withdrawn. BUT some are just really in a very dark distressed place. These sufferers need different treatment protocols. And yes this can cost more but so do constant readmissions. Treatment facilities need to be able to assess the severity logevity history of the ed and rather than see the sufferer as 'difficultt' or non-compliant' use different categories - severe, or long term, or embedded or I don't know but surely not non-compliant.
A, can see where your comments are coming from but perhaps group treatment is not appropriate until a sufferer has reached certian milestones - steady weight gain, abatement of harming behaviours, ability to comply with eating requirements without severe distress. - otherwise the sufferer is going to undermine and destabilise supportive group work - of course they are, they are too sick not to.
So rather than label the sufferer better diagnonss and assessment tools to identify those who may require extra support, supervision would not only avoid group tensions but also give these sufferers a better chance of recovery

I had a therapist that likened eating disorder treatment to putting someone with a phobia of snakes into a room full of cobras. We should absolutely expect the patient to make every effort to avoid this thing (food, gaining weight) that they have a phobia of.

Thats the funny thing about eating disorders they mess with your mind especially during treatment. In in outpatient for annerxoia and bullimea. And even then I slip but I neverget accused of not complying with treatment that's just the reality with this illness it tricks you into acting out. Thank you so much do for this post.

Hey, nice site you have here! Keep up the excellent work!


Patient Appointment Scheduling

I work as a Healthcare Assistant and am training to be a mental health nurse and from that stance compliance is about agreed upon decisions by the client and professionals working together. There are instances where compliance has to be addressed in terms of essential medication etc. being pressed upon a client because, as you rightly say, its in the interests of the client's wellbeing which at that time they do not have the capacity to make informed decisions about themselves because they are unwell.

In the UK we have a whole team in the community mental health teams called 'Assertive Outreach' who work with clients who do not comply, inorder to give those clients the time needed. In terms of eating disorders my belief is that its ignorance that confuses the force of the eating disorder with non compliance. I dont believe removing clients from programmes or not allowing them priviledges is effective. It has to be about changing faulty belief systems and dealing with it at the root as one does a weed!

The problem is I think with eating disorders isnt so much the label (though that happens, its damaging and often leads to clinicians giving up on clients) as the perception of 'being forced' or 'having to force' a person to eat, not to purge, not to exercise. Truth is - you cant force a person to eat - where there is a will there is a way and eds are strong and will work around that.

The best way to deal with this is for therapeutic nurturing relationships to be built between clinicians and clients in order for communication to be open, ed thoughts to be challenged and honesty to be safe so that client and clinician can work TOGETHER to support the clients recovery. Its a two way engagement. You cant help a client who will not do anything at all to engage with treatment (obviously not in the early stages but later when there is insight there) and you can't very well work with a clinician who places a time limit on your recovery and has a three strikes and your out policy on ed behaviours which the client has engaged with often for a decade or more.

Its about collaboration. Unfortunately some clinicians have ignorant or else negative attitudes to clients with eating disorders and some clients, even with insight, choose not to fight to recover.

This is a much needed topic to address. So little time is spent on challenging why people do not recover or else take longer to recover. The assumption is often almost universally that for that client the ed was too strong or they didnt try hard enough (usually dr bollocks!). But what if we looked at the interventions given? why they didnt work? from an objective point of view instead of an accusatory or prejudiced one? I believe there is much to learn.

Carrie : This is a really good piece. Another thing I've had happen to me is that the treatment team drops me for needing a higher level of care but my insurance wouldn't cover higher level of care or to see a nutritionist. Therefore my ed therapist dropped me and I couldn't get a higher level of care. I am left with no care. New therapists won't take me because I need higher level of care and medicaid refuses to pay. I have also had a dr drop me because I didn't have a nutritionist and couldn't afford to self pay. The last time I got out of resi no one would take me because I wasn't ready to leave resi but we couldn't get insurance to cover anymore resi. It also seems like I've been black listed for therapists. Our state has very few ed therapists(like 8 in state)and none of them will take me.

Hi! I know this is a bit late to be posting but I thought I would anyway put my two cents in...in the recovery treatment programme I have been in, there was a requirement and strong emphasis on the consumption of a lot of bread in order to gain the weight needed and to balance out intake. I always hated eating that much bread, yes my eating disorder was scared of it, but as a personal preference I didnot enjoy having to eat that much bread for such a long amount of time!. I stood up for myself and said I would eat something different to make up for it, but was made to feel like a failure and not really wanting recovery when all my friends and family argued that if I was having bread where and when I felt like it and not limiting myself, and still eating enough carbohydrate, well then that was ok. This is where I found it hard with doctors, but I am ok now..I do eat bread, naan bread, garlic bread, pitta bread, toast and wraps, but just when I want to.

I want to send this to every single doctor I ever had in the ED unit I have spent too much time at. I want to print out a million copies and send this to every single professional who ever has contact with eating disorder patients. SO TRUE. Thank you.

Haha, I forgot I already commented ages back, well it was just as true the second read around :)

"{{As a side note, how many of us have agreed to do XX and meant it in the office but then not been able to do it back home? Yep. This is called parking lot motivation, wherein you're motivated until you get to your car in the parking lot, whereupon said motivation is subsumed by waves of anxiety and despair.}}"

Or it could be executive dysfunction. I'm often noncompliant with treatments, not because of any wavering in my motivation to follow the treatment, but because I simply can't remember to do the thing when I need to do it. If I don't have symptoms reminding me to take my meds, I forget to take them. Not that I don't want to, or don't think I need them, or anything. It just gets lost in the disorganized tangle of my thoughts, and doesn't pop back into mind at the right time for me to follow my treatment. I tend to stop antibiotics early for this reason, even though I've taken classes dealing with evolution and population genetics and know full well how bacteria become antibiotic resistant. But my frontal lobes aren't able to regulate my behavior well enough for me to remember to do daily routine things like taking meds. (I forget meals, too. I have no hint of an eating disorder, but without proper support I'd starve myself without realizing it.)

WELL SPOKEN!!


"My first thought is: so where the hell are the compliant patients?!?"

"I don't see it as a willful behavior. Instead, I see it as an actual symptom of the illness rather than some sort of malfeasance or misbehavior by a patient."

And everything else. Seriously, who hasn't been labeled (and shamed) with a "noncompliant" label?

ya i appreciate this sharing, i know several people who were thrown out of hospital programs when they struggled lost weight, or had problems agreeing to treatment recommendations.
regards
Pawn Jewellery

Much obliged for sharing the data, keep doing awesome...
ED Doctor Silver Spring