ED doesn't do Maudsley

It may be coincidence, and it may be the inherent difference between the perspective of patients and parents, but I think we may be getting closer to a mutual understanding on my last post. Whatever the reason, we are clearly not all talking about the same things.

When I ask "who is in control" I am asking whether ED is in control.

When some others - notably, people who have lived with ED themselves - hear me asking that question they thought I was talking about whether parents or professionals were in control.

Apples and oranges here. Of course professionals should be offering and the patient should be following treatment recommendations. The question is who is in charge of making that happen: the patient or the parents or the professionals. So amending what I originally said to "accountable" rather than "in charge" would be clearer.

I believe the patient can't be made accountable. That just doesn't work. It is cruel, too. The eating disorder symptoms make that almost impossible and certainly super-human: anosognosia, overwhelming anxiety, cognitive distortions, and the gruesome trajectory of distress as one gets closer to well. When patients are in charge of their own accountability they generally spend long periods of time in states of brain damage, lose their relationships, and stunt their development - not to mention suffer lifelong medical difficulties.

So to me the question is WHO should then be accountable for making sure a patient is fully fed, kept from bingeing and purging, living in a safe and supportive atmosphere, and engaged in psychotherapy and skills building for full remission and rejoining life?

Clinicians can't do this on an outpatient basis. This leaves the patient's eating disorder in charge. We know this. Hospitals can't do this: they release patients as soon as they are medically stable which is nowhere near well or independently able to manage. This also leaves the eating disorder in charge. Residential treatment may offer a longer period of safety from ED, but still isn't long enough and adds an additional element of having removed the person from their family and real life so that there is even LESS safety at home on release.

I keep hearing - here and elsewhere - that giving the accountability to parents is only for this or that population and "what about" the rare cases of abuse or lack of family members. I hear you. That's tragic when there isn't a loving and stable and well-coached family to take over. But if the home and family are not a safe place to take over accountability then the question is: who? Sending a patient home to be accountable for their own recovery is sending them home to ED.

I need the critics to stop with the "anything but parents!" stuff and answer this: if not parents, then who? ED?


  1. Hi Laura - sorry, I made a mistake in my first comment; please print this one instead!

    I am glad we're continuing this debate - because I think it's a really important one....

    I guess I'd like to start this comment by first emphasising that I am not in favour of the "anything but parents" stance. I believe that different individuals may need different (i.e. individual) approaches. The problem is that a 'one-size-fits-all' approach doesn't work in EDs.

    You talk of "leaving ED in charge", as if 'ED' is a human entity that has taken over the mind and body of the sick person. In some ways that is true, and represents how an ED feels, but not entirely. An ED becomes a facet of a person's identity and self - which is one of the reasons why it's so hard to get rid of, but the 'real' self still remains... We are talking here about humans, each of whom has their own specific set of life circumstances, brain neurophysiology, subculture within broader society that has moulded their personality... etc. We are talking about a person, who even when sick is more than just their ED.

    Moreover, the cure/management of AN involves MUCH more than weight restoration. The person needs to feel able to integrate into society once weight recovered, to live without damaging obsessions and compulsions, to cope with trauma if that was in their past, to cope with endogenous anxiety and depression etc.

    I don't think there's a definitive answer to the question, or definitive solution to the problem - because of human diversity, even amongst humans with an ED. Some people with EDs do well in inpatient units, despite 'parentectomy' (I cannot believe I've just used that word...) Others do well with the Maudsley method. Some do well with neither - which can leave professionals and parents feeling defeated.

    Behind 'ED' is a person, with a past, a culture and hopefully a future. We know that the statistics for outcome of AN patients is 3 x 33.3% (approx.). That is, 33.3% recover fully, 33.3% live with a subclinical or relapsing course - and 33.3% die or become permanently disabled. Some therapies work for some and others work for others. We're all individuals.

  2. Cathy,

    I think we are talking at cross purposes here. I'm not sure you are hearing what I'm trying to say.

    This is not about what the chosen treatment is, or about any one approach. All I'm talking about is who is accountable for carrying it through.

    In particular: full nutrition and attending appointments. Who is in charge of making those happen and keeping everyone informed on progress?

    Patients ought not, in my mind, be in charge of deciding on how much, what, when, and whether they eat. Patients ought not, in my mind, be responsible for getting to appointments and reporting to all parties on progress. This is about accountability for compliance, not for what the particular plan is for the patient.

    Whatever the plan, making sure it happens needs to be someone's responsibility. If not the parent, someone. In the real world, patients are left in charge and then blamed and live with the consequences when they can't.

    They live, as you describe, with chronic malnourishment and sporadic treatment. As do the majority of patients.

    I'm not saying that parents are the only ones who can do that accountability part, but if not the parents, then who?

  3. OK Laura, in response to that direct question of who is responsible for ensuring patients stick to meal plans and appointments: for those patients classified as children (in the UK < 16 yrs) it's parents or legal guardian. For adult patients it's more tricky because of the ethico-legal issues I mentioned on your previous post. The patient has a right to autonomy unless they are deemed incompetent.

    But, my point still stands from my comment above. Some patients, however much they are force fed never get better. I know many, many women in their 30s and 40s who have been re-fed repeatedly and always relapse, irrespective of constant therapy, support, medication.. Why do you think that is?

  4. 1. Not fed to OPTIMAL nutrition.
    2. Not held there long enough.
    3. Not given the skills they need to stay there.
    4. Allowed to repeatedly fall back.
    5. Not adequately treated for co-morbid issues and trauma of being ill.
    6. The brain damage of malnourishment has gone on too long or too deeply to be repaired.

    Cathy, here's a question back to you: isn't FULL weight and nutritional stability necessary for all patients? Is that something that can be optional, depending on the patient? Or is it a bottom line regardless of concurrent treatment?

  5. Laura, I don't believe that a person can recover fully from AN without full weight restoration. However, precisely what their weight should be is unclear. We work on BMI, 'set point' weight, etc., but some people aren't recovered properly at. BMI of > 20 while others are recovered at a BMI of 19. How one defines recovery is also debatable.

    I agree with the points you raise above, but what I am more interested in is the practical as opposed to the theoretical. How do some professionals or parents manage to coerce unwilling sufferers to attain and maintain an adequate weight, especially when their psychological symptoms are so rampant? That's much more difficult with an adult than a child....

  6. Yes, certainly more difficult. Just as treatment for advanced cancer is more difficult.

    But first we have to decide if it is right, then we talk about changing the laws and conventions and responses. If it is right, and effective, then we must then face the obstacles head-on.

    I define recovery as robust mental and physical health: living in a satisfying and engaged way in the world. Free not only of problems with food but the strictures of anxiety and obsessions. Able to enjoy relationships and take risks and enjoy humor and leisure and serendipity. Free to feel pain and joy and boredom and curiosity. Fully living, in other words.

    The best way? To catch it early and treat it fully. But if not, then we start where we are and do our best. I don't think we're doing our best now. That's what I'm calling for.

  7. Yes.... But, how can a parent or professional force food into a patient who flatly refuses? That is the question I would really like you to answer. In some hospitals patients that refuse food and pull out tubes are anaesthetised and fed directly into the small intestine. It doesn't necessarily help and it is very traumatising. I don't know if you've seen such patients (I know a few) but they're not going to eat with simple encouragement or praise. It doesn't work!

    That is the practical component I'm seeking an answer to, and which is such an ethical challenge to professionals....

  8. If we believed - and I do - that a patient is in terrible peril if allowed to suffer even minimal brain damage then our stance would be different.

    How do we force a burn patient to endure debridement? How do we medicate a patient during psychosis? How do we restrain during a seizure? How do we get a suicidal person off the ledge?

    The first thing is to decide that the action is urgent and necessary. The second is to offer our confidence and complete support. The third is to settle firmly for nothing less. Throughout, we offer love and optimism that this is temporary.

    In other words, we do not force feed, we stop accepting the alternative. Very few hospitalized patients refuse nourishment when given no other choice. Those who do are at grave risk to themselves.

    A life of unnecessary mental anguish is, on balance, far worse than caring measures to prevent it.

  9. I firmly agree about caring measures... Recently I have beetoon a position to compare and contrast my father's palliative therapy for cancer in a hospice vs. a busy NHS hospital. The former was fantastic, the latter not good at all.

    In the 1970s/80s some treatments for AN left people feeling traumatised and very misunderstood. At least it is now recognised by more professionals that most patients don't choose the illness and are not rebellious brats. Your suggestions about catching the illness early and perseverence make sense.

    Thanks for the debate :)

  10. *Sorry, my phone uses predictive text and gobbledegook... I meant to write in the comment above: "Recently I have been in a position to compare and contrast..."

  11. I am a big believer in the hospice model of care. Wishing your family well in this difficult time, Cathy.

  12. Many thanks Laura... My father has been given only a few weeks to live and summer has been awful since my mother has required major surgery too. I never anticipated how difficult being a carer can be...

  13. I think what Cathy said in her first post is on the right track. . . However, having gained 22lbs (and have another 9 to go) through OP with a dietican, psychiatrist and psychologist I may be somewhat biased as to what can be expected from the majority of anorexic patients.

    The ED is not a person and not all patients with EDs have no awareness/will to recover. There may be a partial will to recover or the patient may be able to make progress with support.The patient may be able to retain SOME "control" of their eating and be held responsible for their behaviours even when deeply anorexic. HOWEVER, the patient must have SOME motivation to make a change.

    A team/professional/family may have to start small with the ED individual when it comes to taking responsibility. Perhaps the patient could begin by increasing their mealplan by 200 calories or decreasing weekly purging by half. Once these goals are mastered, there can be a progression. . .

    This also means that there needs to be tolerance for mistakes - if the patient loses weight or begins to binge, there must be acceptance on the part of the family/professionl team and from there an action plan is forumulated as to how to proceed. This may mean a voluntary admission into hospital, having someone monitor meals, etc.

    During this time the individual can also focus on living their lives and staying in the "real" world so that they have something to recover "toward."

    This is how I continue to recover -- in small steps and achievable goals. Perhaps this is the approach for individuals who are adult and anorexic. It isn't so much taking control away from the ED but asking the individual (not ED) what they feel ABLE to do to combat the ED. . .

    The analogy of the ED as a demon or monster is a good one, but it is not complete. There are not two entities living in the same body. An individual does have the ability to challenge thoughts EVEN at extremely low weights, though this may be difficult. I think you overestimate the power of AN and underestimate the strength of an individuals personality.

    The fact is it is not clear at what precise point people with AN become incapable of making their own decisions. A GREAT answer to your quesiton Laura, would be to determine a sound method of when an individual loses capacity to care for themselves and work from there. This does not always occur at AN diagnosis. Just as bradycardia is not an outcome in EVERY case of AN, so too as anosognosia not always present.

    I can choose to refuse chemo if I am suffering from cancer. If I am a diabetic and wish to abuse insulin I can. If I have ADHD I can choose not to take Ritalin.

    Perhaps for some individuals they NEED to travel the road of AN to get better. For example: this last relapse taught me a great deal about myself and my own strengths. I don't know if I had the insight to recover or even accept the help that was given to me until I relapsed and realized what I could lose. If I had gone IP or done Maudsley, I may have continued to believe that AN could give me what I wanted in life.

    Just rambles.


  14. Laura,
    I really appreciate this post. I know that for me, had my parents taken on the responsibility of making sure I went to my appointments and was well-fed, I would have been on the recovery path much sooner and I would have also felt more loved/supported/ enabled to get better.
    That being said, even without this kind of help, I was discharged from 24/hr care and able to still be the one in charge. It is not always the default that ED is "in charge" if parents or clinicians are not. I think A:) puts it well in her comment above, she said: " I think you overestimate the power of AN and underestimate the strength of an individuals personality."
    That's what I want to impress upon you, if i may, that for some (I am certainly not saying for all) ED sufferers, there is still a glimmer of strength in there, so that life is not necessarily doomed to ED if parents or clinicians are not in charge.
    I'd also like to point out that I really do not think that the cases of abusive or unavailable parents are rare. If anything, they are the norm and the cases of parents who are responsible and caring enough to do Maudsely are the exception. Perhaps we both know different pools of people and so both of our views are slightly skewed?
    Thank you for this post though Laura, and thanks for always being welcoming of debate.

  15. I just keep reading over "that's tragic" and thinking.

    If you're in that position you either get stronger to handle it or you fold and stay sick. If you're lucky, maybe you'll have friends that will support you.

    In my case, I don't have family or friends and am too handicapped socially and emotionally to handle life so it's easier to just stay sick. Even if I wanted to recover or seek treatment, it isn't possible.

  16. I guess I'd just like to elaborate on something we have all touched upon in this thread - and that is the reference to an eating disorder in the third person - as if awarding it some human identity.

    It seems that over recent years there has been a trend towards (some) people talking about their eating disorder as a separate entity and giving it some cute name, like 'Ana', 'Mia', 'Ed'. To be honest, I despise such terminology, which is too reminiscent of the 'pro-anorexia' and 'wannarexia' culture - which I also despise, because an eating disorder is NOT a cultural trend.

    I abbreviate the term 'eating disorder' to 'ED' simply because it is quicker to write, not because it is short for Eddy, Edie, Edith or whatever....

    Anorexia Nervosa is derived from the latin and has a medical meaning that may be loosely translated to meaning 'nervous loss of appetite'. Yet, there is also a trend to developing 'spin-offs' on the term - like 'Manorexia', 'Pregorexia', 'Drunkorexia', 'Tanorexia'.... all of which are quite revolting and humiliating to a person who is suffering with a serious mental illness.

    Not sure if all of that makes sense...

  17. To the "Anonymous" who feels recovery is not possible for him or herself - you can. Your illness may be trapping you into the belief that no one can or will help you. I speak to many, many recovered people who felt as you do - but they did recover and there WERE people who could help. I can't help you directly but I offer (and challenge) you to have someone in your life contact me at FEAST and see what can be done. It is worth it. YOU are worth it. There is a life out there for you that is different and interesting and satisfying.

  18. There is a margin, it seems to me, between being controlled by and being in control. There is a real person - unique and with unique abilities - alongside the eating disorder. This margin, and this person, are ultimately the one who fights and triumphs over the illness.

    My daughter did the real and lasting work to recover, not my husband and I. If she didn't she would not be recovered.

    The question is when the person is living in that margin and acting on their own behalf and that isn't that difficult to determine: when they DO so. When an eating disorder patient IS attending sessions, IS eating normally, IS pursuing emotional and cognitive recovery then they don't need someone else to be accountable - and we parents can simply cheer and listen and love.

    When they are not, then parents need to be ready, willing, and enabled to understand that this is not a weakness or a simple choice and they need to know that it is their responsibility to step up.

    Underestimate the ability of patients? REALLY? I am moved daily by the heroic work of sufferers to fight their illness. You know that - you know me.

    Overestimate the strength of ED? REALLY? Think of the longterm suffering of just the people on this comment thread. *I* don't think you simply should have tried harder or that you failed to find the right way. I think you were trapped in a horrible brain state and that we - the world around you - failed to do our jobs. I'm going to continue to exhort parents and society to do our jobs: to help patients get to that margin where they are in control and are fully themselves and ready to do the work to stay there.

    As for whether most families are abusive and unavailable, I've found that most sufferers find their families so when they are ill - and afterward if they are treated in an environment of blaming. It is very sad. But I think most sufferers are wrong in this, and I hope that the next generation of recovered patients will have a different view because the atmosphere of treatment will be different as well.

    I've never met and certainly wouldn't count myself as a perfect parent but most families are pretty normal and reasonably healthy. Some suck. Some are very toxic - but the latter are pretty rare.

  19. Laura, I know that your comment above is not addressing points that I raised. However, I wanted to comment in response to your statement: "Think of the longterm suffering of just the people on this comment thread"...

    As you and many others know, I suffered restricting AN quite badly for nearly 30 years. I am one of the long-term sufferers you're referring to. If I could turn back time to 1976/1977 when my AN was developing and re-live the next 33-34 years again, knowing what I know now, and knowing how treatments for AN have changed, I think I know what would have prevented me suffering such a long time-course of AN.

    I cannot fault my mother for not being available or not being loving or supportive. She was there for me all the time in my teens. She even gave up her job to look after me. We effectively did do the Maudsley method and my mother was armed with weekly diet sheets. However, I did not accept food or cessation of exercise like your daughter eventually did. That was NOT the fault of my mother, and neither was it the fault of my AN. It had more to do with my co-morbid ASD, my inability to read and understand either my own emotions or my parents' emotions, obsessive-compulsive behaviours that had been present long before I ever became anorexic - and coping with trauma and bullying. FBT has not been shown to be very effective when there is co-morbid ASD, and estimates suggest that 1/5th to 1/4 of patients with severe and enduring AN have ASD, and that the AN and ASD are integrally linked.

    There were no ED inpatient units in the UK in 1977 except in London. My family lived 200 miles up North. However, to go inpatient to one of the more humane units that exist nowadays would have really helped me - because as long as I was in my home environment I felt compelled to follow a certain pattern of behaviour (NOT because that environment was in any way abusive). Taking me out of that environment would have forced me to break my rituals and develop new ones. My anxiety would have skyrocketed initially, but it could have been controlled. I could have re-fed and then been given essential one-to-one therapy with a skilled professional (probably outpatient) for helping me with my ASD and helping me overcome the trauma and PTSD associated with rape (the latter by an individual outside of my family, of course).

    It's difficult to explain all of this clearly... My AN never had anything to do with body image or desiring thinness. It was part to do with lifelong obsessional behaviours and part to do with coping with the distress of trauma, including rape and peer bullying. My AN comprised a series of rituals that I couldn't break unless these rituals were prevented by a move to a different environment.

    I am thankful to those researchers who have recognised the AN-ASD link (e.g. Christopher Gillberg in Sweden, Janet Treasure in London and Nancy Zucker in the USA). Most people with EDs don't have concurrent autism, but a small proportion do. Such individuals probably benefit from different therapies.

  20. Laura, this:
    "The question is when the person is living in that margin and acting on their own behalf and that isn't that difficult to determine: when they DO so. When an eating disorder patient IS attending sessions, IS eating normally, IS pursuing emotional and cognitive recovery then they don't need someone else to be accountable - and we parents can simply cheer and listen and love.

    When they are not, then parents need to be ready, willing, and enabled to understand that this is not a weakness or a simple choice and they need to know that it is their responsibility to step up."

    is great and makes so much more sense to me. I couldn't agree more- thank you for the clarification.

    I do however, from my personal experiences, (which may or may not be reflective of accurate, actual numbers) still disagree with you that families unable to care for their ED sufferers are rare, and not the norm. I think it's a little unfair to suggest that sufferers are wrong in how they view their families. If anything, those in the ED population tend to be overly forgiving because they feel undeserving themselves, and therefore would be MORE likely to give their families MORE credit than they deserve, rather than less, because the sufferers themselves feel so unworthy, and tend to blame themselves for everything. I'm not saying there aren't many cases when sufferers wrongly think that their families are abusive/unfair- I was one of those. However, I definitely don't think that is- by any means, the "norm".
    Maybe we'll have to just have to agree to disagree on your last point- that most families are reasonably healthy and pretty normal, and that families that are toxic/ unavailable/unhealthy are rare. I'm not sure there is anyway to really measure this, nor do i think it would really matter much. But what troubles me is- let's say that it was 50/50, yeah?- Just for arguments sake? Well then, I think it would be unfair to not examine WHO should be given accountability for that other 50 percent. I think in that last case, it HAS to be clinicians rather than parents, and it's important to develop good strategies for that population, too.

  21. A couple of things

    The seperation of ed from a sufferer is, I believe, extremely important. My reason is that up until very recently, there has been a tendency to "blame" someone for anorexia. Either the sufferer was being wilful, extremely wilful and stubborn, or there had to be a reason within their past which caused the ed, usually the mother.

    This can only produce enormous guilt. Guilt from all parties. And guilt is a terrible burden to carry, whilst trying to recover from a serious mental illness or trying to care for a sick child.

    Guilt muddies the waters and human nature being what it is, singles out one of the "team" as the scapegoat, the guilty party, the condemned. If this guilt is reinforced by a "clinician", especially one who is appointed by and supported by the state (as in the UK), it can become an intolerable burden and only put obstacles in the path of recovery.

    If my child had cancer, if it was growing through one of her organs or was in her bloodstream or in her brain, I would regard it as a life-threatening intruder, despite the fact it was part of her body. I would still hate the cancer and want to be rid of it, even though on a logical plain it was interwoven with her physical systems and part of who she is. Can I not carry that premis on to the illness in my daughter's brain, despite the fact that it is intangible and has no physical substance? It threatens her very existence and I hate it.

    I am upset by the assertion that the majority of families caring for those with an ed are just normal and that you feel that up to half of the parents could be toxic. I have come across many families who have children with an ed and I have yet to come across a toxic one. Many of us parents love our children, care for them more deeply than anyone else can imagine and often destroy our physical and mental health trying to get our children out of the rabbit hole of an eating disorder and on a trajectory to recovery, full recovery, and a happy healthy life. We have the best motivation in the world to do it and, unlike clinicians, it has absolutely nothing to do with money.

    I find this discussion interesting but would like to point out that we are all on the same side. We all want to help ed sufferers to recover as quickly as possible, in a loving safe environment. There is no one answer fits all here and different things work for different people. However, as a mother, I think that disempowering me and making me answerable to a one hour a week clinician who has not read the latest research, kept up with developments in MRI's of teenage brains or lived and cared 24/7 with a child who has a life threatening illness, is tantamount to putting my child's life in danger. And I cannot let that happen.

  22. If most families of kids with eating disorders were abusive, neglectful, or otherwise toxic, then you would expect to find that brothers and sisters of eating disorder patients are suffering higher than normal rates of emotional problems. But you don't. Also, you would expect that the consequences of poor parenting would show up long before the kid reached adolescence, which is when most eating disorders arise. But you don't find that either. What the evidence does show is that when eating disorder patients selected at random are asked about their parents, their reports about their parents pretty closely mirror reports from randomly selected, non-eating disordered adolescents about their parents. Both groups express tension -- that's inherent in the nature of families. But I'm in favor of putting that aside temporarily and having everyone focus instead on beating the eating disorder illness. Address the other family-related stuff later if necessary.

  23. "The question is when the person is living in that margin and acting on their own behalf and that isn't that difficult to determine: when they DO so. When an eating disorder patient IS attending sessions, IS eating normally, IS pursuing emotional and cognitive recovery then they don't need someone else to be accountable - and we parents can simply cheer and listen and love."

    I suspect we would differ in our definitions of what progress/working consists of -- Read what you wrote again -- this sounds like the profile of someone who is recovered as opposed to an individual IN recovery.

    A patient might be pursueing SOME, but not all of these goals. The patient may still be symptomatic but gaining weight. Weight gain may have stalled at a safe but lower BMI and the patient may be working on emotional/cognitive recovery. . .

    I suspect these are all instances in which you would recommend that the parents step in. The ED would be seen to have "taken over" the individual and any push-back with regards to supervision would be seen as a symptom of the illness.

    However, recovery is not always a perfect process. As long as a symptomatic patient is making progress weight wise or behaviour wise and working TOWARD recovery, it may not be entirely helpful for parents to step in. It may be better to allow the WILLING patient to continue to work with professionals toward lessening/eliminating symptoms and addressing why these symptoms are still in use.

    If a patient has stalled at a BMI of 18, but is still eating normally/plans to gain more weight and needs time to get used to the new weight or wants to make some life changes or needs time after crisis before continuing on with physical recovery, it may help some patients to plateau for a while given that they are stable and the understanding is that they will continue on with weight gain.

    My point is that recovery can still be "owned" by the patient even in the face of difficulty or struggles.

    There IS something to be said for having a patient "make AND correct their own mistakes" as much as it must be an anathema on ATDT. Some patients do have an intuitive sense of what they need to recovery and this does not always run parallel to that of their loved ones. . . Allowing an individual with an ED to make mistakes does not always mean they are going to relapse and willingly throw themselves back into their ED.

    When is an individual capable of making decisions and when are they not? I don't think the answer is simply: when the sufferer displays the actions we expect/would like to see. . .

    Certainly moving toward health is important and the goal of a healthy weight, cessation of behaviours, reduction of thoughts and normal social funcitoning needs to be fulfilled -- but there are MANY paths to this goal.


  24. I apologize because I think that it is futile to argue about the percentage of ED sufferers who have parents that are capable vs. non-capable of helping them recover. I agree with Charlotte that we are, despite these or any other numbers, on the same side at the end of the day and I guess that one answer could be that treatment should be developed to be completely tailored to the very specific situation of a patient, in accordance with her/his and her/his family's wishes.

  25. Who should be in charge of making sure the patient eats is such a tricky question. For myself, I have always been in charge. My family situation was borderline abusive. (I am only recently coming around to acknowledging this, so yes, at least one ED patient is inclined to be overly forgiving of her family.) I do not think my parents would think of themselves as borderline abusive; I know, at the very least, that my father doesn't. So, for my situation, there is definitely a discrepancy between the patient perspective and the parent perspective on this.

    Once, when I was going from inpatient to partial hospital, the dietitian sat down with my parents, told them my meal plan, and asked them to make sure I followed it. I did not want this, which was more about my relationship with my parents than it was about the food. My parents agreed to do this. On the way to the car in the hospital parking lot my mom told me they would not hold me accountable to eating.

    There are patient whose parents cannot or will not be involved. Full stop. However many there are and whatever the reasons, these patients exist and we have to acknowledge that, recognize them when we meet them, and have some way of handling their situation (even if just to say, "we don't know what to do"). I am fully on board with Rose that we need to look at each patient as an individual and consider their individual situation and needs.

    For those patients, we can ask who their support systems are, notice who comes in to visit them, who they put as an emergency contact. Ultimately though, unless they are legal minors, you need their permission to contact those people to ask them to hold the patient accountable for eating. For someone who is so under the spell of their ED, you will probably get that information and permission no sooner than they will begin to eat on their own, at which point it is half moot; by then the patient has the ambivalence that he/she can use to begin to keep him/herself accountable.

    I don't like the personification of ED. I think the personification itself has taken on a life of its own such that is has become a largely meaningless device. I think that the personification is also a truer expression of some peoples' relationships with their ED than it is for others. For me, it isn't a very useful device; I relate to my ED as a coping mechanism.

    For me, saying that patients do not choose to have EDs is not useful because that is not how I relate to or experience my ED. I chose anorexia as a coping mechanism at a specific point in time. For me, defining the ED as a discrete illness is not useful. For me, the ED is a symptom, a coping mechanism I chose as a way to deal with my depression. For me, demonizing EDs as a pure negative is not useful. My experience was that the ED made my suffering bearable. It might sound awful or profoundly sad, but given the same situation with what I know now, I would choose the ED again and I am thankful for it, despite its stickiness after it had outlived its usefulness.

    All of these devices are simply ways of thinking about things; I do not believe that any one way of thinking of these things (ED personified vs. not, ED as choice vs. not, ED as discrete illness vs. not) can currently be proven as correct. They all reflect reality in some way or another and are used to help us understand EDs. They function to explain EDs to people without familiarity or to absolve the patient of guilt/blame, or whatever else. That is a good thing when it is used appropriately. I want these tropes to live. It creates problems when those tropes are applied to people whose experiences they do not very accurately reflect; these tropes must not be allowed to speak on behalf of all ED patients because they are not an accurate reflection for all ED patients.


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