I'm not blaming you, I'm holding you accountable.

Parents don't cause eating disorders. We don't trigger, contribute to, or encourage them. Our loved ones are born with a predisposition that that we can't cause even if we tried. The predisposition is relatively rare and the environmental factors associated with triggering them are nearly ubiquitous and have little effect on the population compared to those who fall ill.

But that's just the cause part. We CAN fail to recognize the signs and act. We DO contribute to overall mental health and to the course of illness if present. We CAN allow the illness to guide our actions.

It's true: some parents fail their kids. Some of us get sucked into guilt and responsibility and become enablers as a result. Other parents simply refuse to cause distress for their kid, or endure the temporary hate and ugliness of what needs to be done. Too often we believe nonsense others sell us that appeals to our weaknesses or vanity or just plain fear. Parents discover there isn't money, enough professional help, government funding, nearby clinics, support from friends and family, and insurance coverage and just settle or quit.

I'm the first person to defend parents as a group and to give all parents the benefit of the doubt. But you know what? I'm also the first to hold us responsible for what we do in response, too. Not that we can always stop the course of the illness -- sometimes we truly can not -- or control all the circumstances. But too often parents just decide they know enough, have done enough, and feel unequal to the necessary tasks. We keep thinking there's another answer, another response that's easier. We keep asking the same questions but don't want to hear the answers, leave it to others to tell us what to do, and fail to see our own complicity in the dynamic keeping the person ill.

The point is, it's not ABOUT us or our comfort. Fear, weakness, lack of information, helplessness, exhaustion: these are OUR problems to solve. The way the illness distorts their thinking and robs them of insight and makes them say or do hurtful things: that's reasonable and expected. It is our job, no matter how hard, to do it anyway. WE became parents. Our kids got a bad hand of cards. But eating disorders are treatable illnesses. It sucks. It isn't about us. It's about what they need from us.

As harsh as I feel as I say this, there is no greater cruelty than regret.


  1. I like this post and the energy in your writing.

    But, don't you think there are parents that (inadvertently in most cases) trigger, encourage and maintain them? Certainly not cause, causation is too
    complex to be attributed to a single factor.

    I think a support network for carers and parents of those with EDs, like FEAST, is absolutely necessary and essential. I think it is great. I know my boyfriend benefited greatly from a families, partners & friends support group. It was his initiative and he thought it was of tremendous help, both in meeting others who had to deal with what he was, getting support, learning more about EDs, etc..

    But, I do wish there was some acknowledgement of cases like my own – where a parent in my family played a huge role in maintaining and perpetuating my eating disorder. They did not cause it, and I wouldn’t even say triggered it (though I think that’s certainly possible in other cases), but that parent, in many ways, tried their hardest to prevent me from seeking and receiving treatment by denying I had a problem, and threatening anyone who wanted to help me. I'll spare you the details, but most people who know the story, do agree my experiences are somewhat on the extreme, but nonetheless… they are real.

    I think my cause, however, is not so unique when you consider patients with EDs whose families are immigrants from countries where EDs “do not exist” (ie, no one talks about it, ever) or they are solely a “Western” thing (of course, they are not). This is the case in my family for that parent. Moreover, there are cases, again, such as my own, where the mental health status of a parent (which was/is not good) actively prevented any sort of family-based therapy. Indeed, I had to hide treatment from that parent. To this day, they don’t know about the treatments I continue to utilize.

    Parents don’t cause eating disorders. But, I think they can trigger, maintain and perpetuate them. And, I don’t blame said parent in my family, at all. It is like blaming the victim, I feel.

    I don't know. I hesitate being so open about this, given that I am not anonymous and I don't want to be anonymous (though maybe I should be), but I just think it is a really important point. I don't want to shift the blame on parents (no way!), but acknowledge that mental health issues that a parent or parents struggle with can really put a damper on family-based treatment and all that jazz, and contribute negatively to the ED.

    (sorry this is long)

  2. I hear your frustration and I share it.

    But it is pretty harsh to hold parents responsible for not following through on what is confusing, difficult, fear-inducing and uncertain given the amount of conflicting information they receive. If they were given a clear, universal chorus of "This is what you have to do" that would be one thing. But more often, they hear one thing from their professionals and another from parents at Around the Dinner Table. Who to believe? Not only that, there are often differing messages from within the professional team itself.

    And what parents OUGHT to do is contraindicated by much of the current literature on EDs. Stuff being published NOW. I can't really think of another illness where parents are not only required to read up and educate themselves on their child's condition, they have to take the meta step of analyzing the information itself, even on reputable websites and authoritative authors. They have to see who WROTE the book, check out the references, analyze the bibliography, read research papers, subscribe to PubMed!

    Even then parents can be forgiven if they seek an easier way. When your child is banging her head on the floor in anguish over a meatball or begging, pleading with you not to make them eat that snack, who WOULDN'T want to make this easier for them? Who wants to see our children suffer like this? Who isn't confused by the behavior changes and fury we see directed at us by our previously loving children? HOW CAN YOU NOT DOUBT YOURSELF IN THESE CONDITIONS?

    Not only that, most professionals out there are going to tell this parent that they are making things worse--and it sure looks true at the beginning. (As if we needed another reason to doubt ourselves!)

    The fault--and I do mean fault--belongs to the professional ED world. Until there is a Standard of Care with actual treatment protocols, until there is some kind of certification for ED professionals to ensure that Joe Therapist knows what he's talking about, and some ongoing accreditation that requires him to stay up-to-date, it's unfair to expect this kind of superhuman understanding/college level research skills/detached clinical caring from a loving parent with a sick kid. You and I know what we know because we've been here for a long time and it's so obvious after a while. But it's true in the professional world too (and THEY get paid to do this!). It's not true to parents in the midst of new crisis.

    When you have qualified professionals telling you one thing and experienced parents saying the opposite, what's a responsible parent to do? When you can get one opinion from a qualified professional and a completely different opinion from another (who due to 'professional courtesy' won't directly call BS on their colleague but will demurely say something along the lines of "These are complex illnesses with multi-factorial causes")--again, what's a responsible parent to do?

    (And that's if you live in an area where you can even find two qualified professionals...!)

    I know you have a HUGE heart for parents in this situation so I hope I don't sound like I'm blasting you. And I do know the frustration of just wanting to grab someone's lapels and shake them: "Man up and feed this child!" But until parents are given clear instructions and are told honestly about the kind of symptoms and responses they are likely to get during refeeding, well, hmm. That responsibility belongs to the ED professional world.

    It should not be a matter of luck that a child receives early, aggressive, evidence-based treatment, but that's where it is now. I feel really lucky that I found ATDT so early in my daughter's illness. Honestly, if I hadn't, I would have followed our professionals' advice and have believed I was being a responsible parent. And I'm pretty sure my girl would have died.

  3. Tetyana,
    I honestly don't understand how parents could "trigger, maintain, or perpetuate" anorexia nervosa in an adolescent, even if they wanted to.
    Care to elaborate with specifics and objective evidence?

  4. Colleen - I agree that professionals need to change. But some of the responsibility Laura places on parents goes to parents who actively discourage or prevent their children from seeking treatment or accepting that they are ill. They are not culpable for the illness, but in that scenario they, not professionals, had the power to attempt to fight the child's illness and did not do so. I know you will have seen parents ill advised, but I can tell you from bitter experience that some just never seek advice at all due to denial.

  5. Thanks Colleen ;-)

    Even when you do find professionals who will urge the parent the permission to refeed they can't always be there with you 24/7 or convince their colleagues in other fields who parents and children may need along their way (paediatricians, teachers, psychiatrists, emergency staff) to back up their suggestions.

  6. This is such a critical conversation, in my opinion, and it is gratifying to see it done in a frank but constructive and empathetic way (both for the subject and for the those who have commented). And everyone so far has made very important points. Yes, there is a scandalous amount of bad treatment being dispensed by those who should never hold themselves out as ED experts. And yes, parents can and do (in our experience) sometimes actively undermine treatment and therefore meaningfully contribute to an adverse course of the illness. That said, it seems to me Laura's central point still holds: given all of these things (and we agree they are all true at certain times) can you really ever turn over your child's health to the "system", or does the ultimate responsibility for achieving an acceptable outcome, as difficult and unfair as that may be, reside with you, the parent? Is this responsibility really something one can ever truly delegate to a provider? I think not. For while a standard of care for EDs still seems frustratingly elusive (at least for a broad swath of providers; for others we find the continued "controversies" to be rather inexplicable e.g. whether AN is a medical illness of the brain and should be treated as such) that is often the case with human illnesses. In other words you can't look to the professionals (and the industry as a whole that, at least in this country, often actively resists change in its own interests) to save your child, for the simple reason that "they" are not working to your specific time frame. In other words it may take years, if not decades, for a true and meaningful consensus to emerge (unless of course providers as well as parents and their organizations are willing to pierce the BS, as Colleen puts it, and begin to name and shame their colleagues who are blatantly guilty of malpractice). So the only question is: what do we do in the meantime? Should parents throw up their hands and say, 'well, I guess until the experts agree there's nothing I can do.' Of course not. And I stress, that is not to say such parents should not have our utmost support and sympathy or that we judge them for perhaps (tragically) not succeeding against long odds and numerous challenges. But we have little choice but to acknowledge, as I believe Laura attempts to do here, a very harsh truth: in the end, our children have no one but us, their parents. And if you think this is wrong - but nonetheless true - then welcome to the fight, because no one should be satisfied with the general state of ED treatment today. As Colleen rightly points out, it places parents in impossible positions and fundamentally betrays the responsibilities treatment providers have to the children they treat. They clearly need to do better, but until they do, parents will have no one to rescue them.

  7. Given that I'm not a parent, do you have any sense how common it is to be told that you (the parent) caused the eating disorder? I haven't met professionals who ever blamed my parents for it (and they shouldn't be blamed for it). But maybe I'm lucky. Scary thought. I must be really ignorant about just how common it is :(

  8. Tetyana, you ask "don't you think there are parents that (inadvertently in most cases) trigger, encourage and maintain them?" and my answer is depends on how you mean those terms. If you mean the behaviors and symptoms then yes, of course. But not the mental illness that drives them. For example, parents can go on a diet with their kid not knowing that they are predisposed to mental illness set into action with food restriction. Parents can maintain the symptoms by failing to intervene or trying to bargain - or by throwing up their hands when it gets difficult. That's not cause and it is important to make that distinction.

    Colleen, you know I agree EVERY WORD on why most parents end up enabling the illness and failing to get good care. Not in dispute. But there are ALSO parents who fail their kids out of less understandable issues. I see both, and although I spend 95% of my energy trying to change the way the professional world treats parents and exhorting parents to find and use better professional help I also encounter families whose refusal to act or learn or stand up to their situation really troubles me. I'm really frustrated by these encounters and so are many of the very best clinicians out there.

    Systemically, the main problem is lack of clinical support and knowledge and skill. Individually, not all parents step up. If we're going to credibly empower parents to take action and make decisions we have to acknowledge that they also have the power to make bad decisions.

    How common is it to blame parents? VERY common. Better than it used to be, but very common. Also crippling to caregivers at a time they need to do incredibly important parenting.

  9. Laura, I don't disagree with what you have said but I will point out that if we had better treatments for eating disorders, it wouldn't be so hard for sufferers and parents alike. That's the cruelty of it all.

    Certainly if diabetes runs in the family and a parent feeds her child candy, soda and ice cream all day and the child becomes obese and gets diabetes, well that could be considered a parent's doing and parents might be taken to task but no one assumes they maliciously gave their child diabetes. They just get the proper instructions on how to take care of the child with diabetes and how to get the weight into a healthier range. And sure, lots of them don't follow the instruction, but there is not the same degree of angry shame and blame that parents get with eating disorders. I'm not sure if people have angry blogs about obese children with diabetes? I just don't get the eating disorder world.

  10. I am a 44 year old mother of five with an unnamed eating disorder....unnamed because I have clear body image and an the first to call out when I am too thin. Unnamed because I do not throw up, weigh calories or ever think about food until it is life threatening. I have named myself though. I am a starver.
    Every time my parents (at first) or later my husband or kids or boss would point out a deficiency I would only know one way to react ...to deprive myself of food. Like I was not worthy of the cost of that food or the feeling of that food. Was that my parents fault? My husbands or anyone else's? Never. Food had never had a cost or a value attributed to it other than by me. Because I have power over when and what I eat that turned their deficiencies into guilt and concern on their part and I never have had to really adjust my behavior because I had away to deflect the truth in any negative comments coming my way.
    And now truth be told, I am struggling to be the person I want to be which is who I would have been had I listened rather than deflected by starving. My daughters friend asked her the other day if I had cancer or something because I am so thin. I walked to the mirror after overhearing this and initially thought no I am this way because my mom said this and so and so said this and then I sat down in front of the mirror and realized I chose this. I chose this as a way of coping with any critical comment that came my way. I chose this as a way to control not so much my feelings but the feelings of those around me. I am responsible for being 91 pounds on a good day and blaming everyone else for my low energy and inability to get out of bed.
    As a parent of many however, I have also seen how any parent sick or not influences a child. As a parent if my child struggled with anything from an eating disorder to a drug addiction I feel you should reach out to every possible resource to get help... As you would do if they were terminally ill. And take the criticisms that come through that intervention because at the end of the day who really cares who's opinion or actions were right if you have saved the life of someone you love.
    We are all a product of our environment but at some point the mind has to take on a life of its own...and soon for the first time in many years I will hit 100lbs and that is my responsibility no one else's. And ps my parents are great and never bargained for a life time of this

  11. Hello to the last Anonymous. I don't think we've met. Your struggle is moving and well-expressed. I look at your eating disorder in a different way, but no matter how we look at it you have a treatable disorder: are you getting professional help? EDs have a high genetic transmission and getting treatment yourself may be pivotal in helping your children and grandchildren as well.

  12. Tatyiana, there are many problems that we encompass in the field of treatment of illness most especially mental illness. I can't tell you, as a nurse, how many times I've come across the older generation of beliefs that all doctor knows all and can treat all patients effectively and safely. Their blind faith and trust leaves them very vulnerable. Your parents grew up with a set of beliefs and probably very little support in understanding the changing science. I am so sorry for your lack of care as you clearly recognize the need. I don't know your family so I could never comment on their commitment or intentions but I know my own. I have always loved being a mother. I have always been vomitted to my children's well being. But I have made mistakes. Minimized things I knew weren't right. I tried to rationalize them as different but with love and patience and some professional advice, we would be fine. I missed the boat by a mile. My husband and I fight everyday for oyr daughter. She is now 22 and in the best program in the country, maybe rhe world. This program relies in our deepest involvement. They recognize the scope of this illness and what it takes to recover. We are now a team but we were once a floundering mess, hampered by poor professional advice and intervention and good intentions gone bad.
    What Laura is saying smacks the nail on the head. I think MOST parents love and would do anything to help their kids. They need the right kind of help and the support and courage to believe they need to be a central role in the recovery plan.

  13. Tatyiana, there are many problems that we encompass in the field of treatment of illness most especially mental illness. I can't tell you, as a nurse, how many times I've come across the older generation of beliefs that all doctor knows all and can treat all patients effectively and safely. Their blind faith and trust leaves them very vulnerable. Your parents grew up with a set of beliefs and probably very little support in understanding the changing science. I am so sorry for your lack of care as you clearly recognize the need. I don't know your family so I could never comment on their commitment or intentions but I know my own. I have always loved being a mother. I have always been vomitted to my children's well being. But I have made mistakes. Minimized things I knew weren't right. I tried to rationalize them as different but with love and patience and some professional advice, we would be fine. I missed the boat by a mile. My husband and I fight everyday for oyr daughter. She is now 22 and in the best program in the country, maybe rhe world. This program relies in our deepest involvement. They recognize the scope of this illness and what it takes to recover. We are now a team but we were once a floundering mess, hampered by poor professional advice and intervention and good intentions gone bad.
    What Laura is saying smacks the nail on the head. I think MOST parents love and would do anything to help their kids. They need the right kind of help and the support and courage to believe they need to be a central role in the recovery plan.

  14. At anonymous 4:40pm, by "trigger, maintain and encourage", here are some examples:
    - encourage by comments that actively state that you are a better person due to your eating disorder, you are nice now that you are emaciated, etc..
    - maintain by denying treatment, denying necessity for treatment, to an extreme extent, so far as verbally threatening anyone who suggests that there might be an eating disorder, denying doctors, denying obvious need for treatment (extreme weight loss, loss of menses)
    - triggering through comments as well, comments that i've mentioned were triggering, but continue to be said (wont elaborate as it is too specific). despite others in my family telling that parent that their actions, behaviours and words are very damaging to me, said parent continues to do and say those things, and denies the obvious consequences (relapses)

    the point isn't where the parents love you or don't love you, disown you or not, know or don't know about eating disorders. the point is that, regardless of all of those, they still can trigger, maintain, encourage and perpetuate them. do i blame that parent? no. do i think parents are responsible for their kids recovery? no. do i think parents are responsible for knowing about eating disorders? well, it would be nice if they did, but no. do i think they are bad parents if they don't help, don't know how to help, or even trigger/maintain/encourage it? not necessarily.

    not all parents have the privilege to take the time to learn about eating disorders or the mental capacity to do so, take time off to help their child, or whatever. there is such a thing as bad parenting, there is such a thing as parents who disown their kids. they do exist. there are even parents who kill their kids. not all parents have the knowledge of the english language to understand the develops in the eating disorder world, content which may not exist at all in their mother tongue.

    should parents be expected to have the same knowledge as professionals? no. do they? rarely.
    the idea of holding parents accountable strikes me as something very privileged parents would say. you may not realize it, but you are. you know English and the material written in English which is not accessible to non-English speakers. you weren't introduced to the idea of eating disorders when you were in your late 40's, after a few years of living in a completely foreign country, with completely different values, most of you don't have a history of mental illness or personality disorders, psychosis or what have you.

    anyway, just to clarify: not all of that applies to my case. i'll be vague on what does, but all of it is what i've witnessed in other families and some in my own, too.

    and yes, i'm too lazy to capitalize right now.

  15. Parents do not cause anorexia nervosa. Parents do not maintain anorexia nervosa. Most people when they become semi-starved begin to crave food because of the biological forces that control eating behavior. Nobody would claim that parents cause those biological forces. People with anorexia nervosa, on the other hand, have inherited biological characteristics that produce the opposite response; when they become semi-starved, they are repelled by food. Why would anyone claim that parents cause that biological force? It would make no more sense than to say that parents cause the craving that most of us experience when we are hungry.
    Although parents neither cause nor maintain anorexia nervosa, parents are able to alter these biological forces. They can temporarily take over, feed their kid a lot of food, help her re-establish normal eating patterns, then get her back on track for a normal life that was disrupted by the eating disorder. Any parent who fails to take advantage of that opportunity is taking a huge risk with their child's future. This is not rocket science, folks.

  16. Anonymous @11:58, that is an excellent, excellent description of the difference. It's not rocket science but it does fly in the face of and deeply upset those who come at it from another direction.

    It is really important to distinguish between what we can do and what we can't. We can't cause this biological response, but we CAN fail to recognize it or refuse to do the hard work of dealing with it. And we do need to hold parents responsible for doing that. It is hypocritical not to.

    We can't make parents responsible for the disease or the bad treatment and media information - but we MUST empower parents to act and I think it is reasonable to also be critical with fellow parents when we disagree with them.

  17. Oh look what happens when I go off to a festival (rain, came home, left girls whooping it up in a muddy mosh pit - peaceful as a consequence - bliss!).

    So much to discuss. Firstly, Tetyana, you are right on so many points. We should never ignore the exceptions. I have encountered plenty of parents who refuse to acknowledge or take charge or do ANYTHING about their child's illness and it makes me sad, not angry. Ignorance is not bliss.

    Secondly, the shame and stigma of mental illness is alive and kicking and, in some parts of the world, just not acknowledged at all. Our gaols are full of mentally ill patients. My parents' generation prefer not to talk about it and there are plenty of my friends and peers who still cannot bring themselves to acknowledge it (enter my sister-in-law who will only whisper the word "anorexia" behind her hand - Huh?).

    Secondly, you are right about being the privileged ones able to take time off to read and learn and utilise our skills to help our children recover. This is also due in part to the stigma thing. If your child has cancer, employers are falling over themselves to help you out and give you time off. If your child has an eating disorder, you may as well whistle in the wind in my experience.

    Thirdly we come to parent blaming. If it is not said outright, it is implied and very obviously.

    I agree with Colleen on many levels, especially not having had any kind of "college" education and admit freely to Skyping with Extralongtail a lot so she can explain all that bio-chemistry stuff in words of two syllables!

    When I first found ATDT, I thought that they were all as mad as a box of frogs and that my (hugely expensive) professional team knew what they were talking about. I knew nothing about calories (never been on a diet in my life) and assumed that feeding an anorexic 12 year old 1,800 calories a day was adequate (*headdesk*). It took me a long time to work out that this mad bunch of parents actually might know more than the professionals.

    I DO think it is time for more parents to step up to the plate and take responsibility as far as they can. There are plenty of good loving parents who are trying to do all the right things and it is not working for a variety of reasons. My argument is that these are the parents of the patients who need the time, money and specialist long-term (decades) treatment for eating disorders and co-morbidities. IF we could energise parents who CAN successfully help their children recover to do so, then those who cannot, for whatever reason, would have the available resources to help their children.

    Food is, after all, just food.


  18. At Anonymous 11:58AM: I'm not denying the biological aspects... if I can call myself anything, it is a biologist. I think anyone who clicks on my blog and reads the About page will quickly understand my perspective. But just as you say they can alter the predisposition to finding starvation anxiolytic, for example, they can also perpetuate it and drive it further.

    Also, I'm not limiting my experiences to anorexia, but bulimia as well. In my case, I know if I start restricting again, I'll quickly fall back into the trap of finding it extremely anxiety reducing. I'm sure it will always be anxiety-reducing. It is very addictive. So I know I can't. I fight it. I also know bingeing and purging is, well, awful. Regardless of how addictive I find purging, the negative effects of the whole ordeal SUCK. a lot!

    Most of the time, I am doing really well. But, too much time with that parent, and I am more prone to engaging in symptoms. That is what I call trigger. Continuing to say and do things that that parent knows will just make it worse for me, after I've said it, my other parent said it, that parent's parents said it, therapists said it, etc.. is perpetuating it. Of course, they didn't cause it. And many other things can trigger relapses, but nothing as acute as the actions of that parent. That parent has nothing to do with the fact that restricting or purging is anxiolytic and rewarding. Nada, except maybe passing on some genes that attribute to those traits. And that parent probably doesn't wish me harm, but their mental health state (not great) does continue to cause me to relapse, particularly into bulimic behaviors, but when I lived at home, anorexia. This is what I mean by trigger, perpetuate, maintain.

    My other parent is more like the parents you describe, unsure of what to do, wants to help as much as they can, but feels incapable, worried, unsure of how to approach me, reads up on it, understands as much as possible, listens, and so on. They maintain it in the way I think most of you mean: by the absence of doing anything, by enabling symptoms to continue (this is when I lived at home, so, 6 years ago). But that's different from actively provoking symptoms.

    I just think that it is important to acknowledge the exceptions. I've been in enough support groups to know that my situation (and like I said, I hesitate to go into full detail, cause things get 100000x crazier), but I am someone who deserves treatment and recovery, and I think my situation is just as important as anyone else's.

    There is still a lot of mental health stigma, for sure.

    In my case, the professionals I dealt with were mostly really amazing. But, again, that might be due to the fact that I'm in Toronto, and we do have one of the best, if not the best, Children's Hospitals in Canada, with an adolescent ED unit (recalling from a conversation, might not be completely accurate). So, in that sense, I'm privileged. I'm also privileged in that I didn't need my parents to sign, approve, or hand money over for any treatment I did. They just pay taxes to the government. Money was never anything anyone talked about. I can definitely see how money would complicate the picture, particularly if parent's are unsure if it is worth it, if it is even a real problem, etc..

    With regard to having access to information, I agree. That's kind of the purpose of my blog! I think journals need to be open access, but also, we need better science journalism, better science education, better mental health training for clinicians and nurses, and the list goes on and on and on..

    Also, I can skype with people to explain science! In about half a year, I should have my MSc, officially in 'Medical Science', but really, in molecular genetics/neuroscience. I like talking about science (more than talking about eating disorders, ssshh!).

    1. Tetyana, we're actually agreeing but using different terms, I think. What you are calling triggers are what I'd call an unhelpful home environment and a lack of appropriate caregiving. That's not cause, and the reason this is important is that NO ONE should have an unhelpful home environment. Perpetuating factors, again, are not cause, but they are inappropriate and harmful.

      I am, in this post and elsewhere, absolutely acknowledging poor parenting and poor caregiving and how this perpetuates and exacerbates eating disorders. I'm just distinguishing it from cause. I'm not saying these things are acceptable or not wrong - and I'm not saying that don't HAVE to be fixed, I'm just saying they don't cause the illness itself. I know it sounds silly to parse it but it has practical implications.

      One, because NO CHILD should be mistreated and they shouldn't have to have a serious mental illness for us to recognize that. Two, because it leads to looking for "causes" in a family's behaviors whether they are there or not - a witch hunt that does nothing but harm.

      We don't NEED to think these things cause the mental illness. ED Patients need and deserve a safe, nurturing, well-informed caregiving environment, period. And a loving, healthy family environment is a right, not something we earn by getting ill.

    2. Laura,

      I think you are correct in that you and Tetyana are speaking about the same thing -- I think she is correct to use the word "trigger" and in a previous post, she did attempt to distinguish it from "cause."

      As has been pointed out, parents do not cause EDs, but can perpetuate them by aggravating an existing biological predisposition -- in the same way that stress can cause panic attacks in vulnerable individuals. . .

      In my opinion, a trigger refers to something that perpetuates/aggravates ED behaviours, whereas when we begin to speak about cause, it is necessary that we begin to address biological predisposition, pre-natal factors (i.e. Obstetric difficulty/premature birth is more common in the birth histories of those with EDs vs. healthy controls). . .


    3. Also, Tetyana . . .

      I have been reading your blog and from your About page, I see you are at IMS/the University of Toronto -- I formally begin graduate studies (direct-entry PhD) at UoT in September, but am working for my supervisor this summer (to begin my PhD project early). . .

      It would be great to meet you (if you are comfortable) or perhaps correspond by email. . . I know very few people in Toronto and it would be nice to meet someone with similar interests (I am a science nerd and also do extensive ED research on the side) and experiences (similar family experience, history of AN and treatment at Sick Kids as a pediatric patient and also in the adult system). . .

      Let me know if you are interested and I can pass you on my email address. . .

      A :)

    4. Laura, I think A:) has put it nicely.

      What you call unhelpful environment, well, I think it is triggering, and perpetuating my ED. I think some environments are unhelpful without being triggering or perpetuating. They are just that, unhelpful. It is a neutral thing, or slight negative. My household was an extreme negative. To call it unhelpful is not doing the severity of the situation that occurred justice. None of these things cause the ED in and of itself. And moreover, they are not the sole triggers, usually. Not for me, that's for sure.

      On the one hand, I don't want to get too obsessed with words, but I do think saying parents can't contribute, encourage or trigger them is not true. I mean, they can't trigger the ED itself, in the sense of "causing" it, but they can trigger symptoms ONCE the ED is already there. Just like an event prior to the onset of my ED caused severe mental health problems in that 'unhelpful' parent; I didn't cause it, but I triggered, inadvertently and in part, something that parent was predisposed to.

      To A:): Yeah, of course. I'd be happy to meet! You can email me or just use the "contact" page on the blog - all goes to the same place. (I didn't do treatment at SickKids actually - sorry if I wrote that, I just know they have a program, though I don't think it matters).

    5. Parents can contribute, encourage and even promote ED behaviors - we can also enable and participate in and even force behaviors. We can be actively unhelpful and HARMFUL.

      If parents are doing ANYTHING that is harmful or even just neutral when a loved one is ill then that is WRONG and HARMFUL.

      Sorry for shouting, but I think I say this so often that I feel misunderstood.

      It is STILL important to parse this from cause for all the reasons I've cited. Just because we didn't cause the illness doesn't mean we are off the hook. And that was the point of the post: not blaming for cause doesn't mean we can't hold parents accountable for what they do and don't do-- we must.

    6. On the "triggering" language, I don't like it because it is used for a wide range of very different environmental conditions.

      For example a patient might find a parent's chewing "triggering." Or a parent's verbal abuse. Very very very different things, those. We can't usefully define triggers if they include both completely benign and normal things with things that simply should never happen. Then there are the actions a parent might take that are more and less appropriate in certain contexts -- for example a parent training for a marathon while caring for a restrictive anorexic.

      Patients have to learn how not to respond to stress and normal life by using ED behaviors, yes, but the problem is the response and not necessarily the stimulus. Bad environment shouldn't be acceptable no matter what and needn't be called a "trigger."

  19. Great post Laura and great discussion all! I'm so glad to see this as I too get very frustrated when I am talking with a parent who is in denial. I've learned a lot from the parents of those with alcoholism and drug addiction about what this denial is often rooted in. I could NOT fathom it for the longest time. But then a dad at a drug treatment parent program explained how he was so in denial due to his fear for his child...this was after 3 days of sitting through the parent program and his child being committed to a treatment center for serious drug and alcohol use. But in his heart this dad just could not face it. He did on the 4th day and he just sobbed.

    Don't know why I didn't get it that it was the fear getting in the way. Now this was just this one dad's experience but when I am coaching parents who tell me they are in denial or I hear it but it's not being said and I name it, they fess up to the fear.

    FEAR is a powerful feeling and keeps us stuck.

    I am by NO MEANS making excuses for parents who take no or little action. I'm just sharing what I have seen that helps me understand what on earth this darn denial is about. Then I can have more empathy. Otherwise I want to shake their shoulders and scream, "Do SOMETHING or your kid is going to die." Which would just scare them even more and keep them stuck.
    Becky Henry

  20. What a lively discussion!

    I'm going back to my point: that it's hard to hold parents accountable for their child's health when they aren't given the right information. Or when there is such conflicting information out there. Or when they are not told honestly what to expect even if they do the right thing.

    In some cases, as Tetyana points out, there may be a language barrier between the parent and the most current information out there. There may also be parents who are unable to act on good information even if they recieve it, as it sounds like her parent is unable to do.

    Morgan, I think you are setting an impossibly high standard for parents to meet. I WOULD do anything to help my child recover from any illness. But picture me (or any other parent) talking to a 'ED expert' with 20+ years' experience and an alphabet soup of letters after her name, who says she has helped many people recover and has references to back it up, who tells me with great conviction that I need to back off because I am making things worse--am I being an irresponsible parent if I listen to this expert? I've sought out the best in the Puget Sound area and hasn't that been responsible of me? Or am I only responsible if I happen to hit on the 'right' expert? You could look me in the eye and be just as convincing with a completely different paradigm and treatment protocol.

    There really is no limit to what I would do to help my child recover. It's not a matter of my not trying hard enough. BUT THERE'S NO FRIGGING PATHWAY!! And that's the fault of the ED field, not the parents.

    MB Krohel asked Dr. Thomas Insel about publishing a Standard of Care (I'm not sure that's the right terminology). That hasn't happened. Why not?

    I'm not in the medical field, but I don't know of any other serious illness where the parents are required to do this level of detective work. (Except for Susan Sarandon in Lorenzo's Oil!) In practically every other illness, it would be perfectly responsible to rely on the experts. Not with EDs. Parents do have to know more than their professionals. It's not fair and it's unreasonable. My daughter is lucky that she has a mom who was lucky enough to find ATDT and FEAST. I'm lucky that Laura Collins went before me and had the courage to open this pathway. ONE THAT I THINK MORE CORRECTLY SHOULD HAVE BEEN OPENED BY THE ED PROFESSIONAL FIELD AND STILL SHOULD BE (felt like shouting that).

    (okay, and i know there are parents out there who just don't act on the good advice they are given and they drive me crazy too)

    1. This comment has been removed by a blog administrator.

    2. Well, Colleen, let's say you are right; it is the fault of the ED providers. Now what? Does that fact really help anyone's child to recover?

      Of course, you are also right that it means pressure must be maintained until professional organizations (and their members) agree to adhere to an evidence-based standard of care.

      Incidentally, allow me demonstrate what happens when one provider calls another to the carpet for not following evidence-based treatment:


      We were (and to some degree still are) ostracized among certain circles of the local community of providers (and beyond) for speaking out so bluntly (see comments 24, 26, 27 passim). Yes, we got some support (thanks Charlotte, Laura, Sarah Ravin, and others!) but I've also been told by a prominent senior executives in the industry that this sort of behavior is why Dr. O'Toole is often not asked to speak at conferences, etc. Perhaps this is true, perhaps not. But there is little question we rocked the boat; we made enemies. And all for uttering an inconvenient truth in public (as best we understood it). I've seen Craig Johnson speak about the ineffectiveness of psychotherapy (alone) to treat AN, and Dr Insel has alluded to much the same (albeit obliquely, in my opinion). But has it resulted in getting us any closer to a professional standard of care and conduct, and one that would be enforced? I have my doubts.

    3. Big sigh.

      Morgan, you should know that I'm on your side and that your mom is one of my heroes. If we had had the Kartini message as the one that was presented, rather than the "modified Maudsley" that our local best espoused, maybe things would have been a lot easier around our house. As it was, it was a tough position for my husband--to have our well-credentialled professionals saying one thing and his wife saying something very different based on her research and other parents' experience. The poor guy's head was going back and forth like watching Wimbledon at our therapy sessions when I challenged our daughter's therapist. Who should he believe? The professionals? His wife? He wants to be a responsible parent but where is the safe path?

      That's where I think EDs are grossly unfair. That parents have to become MORE educated than the professionals they hire or their child could die. That's just not true of any other disease. I'm in the lucky position of working for myself and I could take the time to read, research, call, ask questions. My husband works hard. He doesn't have the time to do this and we need his income/health care benefits. He has to believe SOMEBODY--who?--and now we're back to Wimbledon.

      It's really hard to get everyone on the same page when the most expert person on the team is not one of the professionals. They tend to not like that. It's easy to say, "Then get a new team" but it's pretty darn difficult in real life. We live in a major metropolitan area and there aren't that many choices--and there were a lot fewer four years ago. Going to Portland or San Diego would have been a hard sell at this house.

      I really think there has to be some Standard of Care so that my husband's neck can have a rest.

      I know you guys have been ostracized for your outspokenness on this issue. There are a lot of people whose professional careers rest on a certain paradigm and they are going to fight every threat in order to protect it. They don't like being attacked by their peers who are also their competition. I am grateful that you speak truth to power.

      I know Laura has also suffered a billion slings and arrows by doing the same thing from a different angle. As parents, we are suspect thanks to Hilde Bruch and those blasted misguided theories of hers. Whatever we say it is defensive because we have a vested interest in not being blamed. Or we are dismssed because in denial of our poor parenting. It's a no-win position to argue from. It's not like we are trying to promote a different antibiotic; we are trying to avoid our own (supposed) culpability.

      We can't change things overnight. But with people like you and your clinic calling BS on your colleagues and peers, and with people like Laura and FEAST rising up from the grassroots, we can at least challenge the status quo. We have to challenge it at every angle...relentlessly. But hey, if we can fight ED in our kids, we've already proven to be pretty relentless!

  21. Thank you for that Becky.

    I have found fear to be one of the biggest barriers to my effective care of my child too. Unfortunately in our case the deliberate heightening of parental fear which is part of manualised FBT backfired and made us more stuck in unhelpful, flapping mode running round in circles rather than pressing forward. Now we have the additional fear of failure which is associated with the only professionals with whom we can work (geographical and systemic constraints) to deal with.

    Laura's right though "it's not ABOUT us or our comfort. Fear, weakness, lack of information, helplessness, exhaustion: these are OUR problems to solve" - working systematically at it seems a more rational way to do it than shouting at myself, but it's tempting at times!

  22. A:) and Tetyana, it is good to get these terms figured out. I don't like the word trigger because it has too many meanings out there and that muddies discussions. My point in all of this is just because something isn't the cause doesn't mean it is not dangerous and doesn't need to be fixed.

    I believe fear IS at the heart of most unhelpful parental responses. All the more reason we need clinical and personal support to restore our parental courage.

    My original post here was a personal fit of pique about a spate of encounters with parents who are swimming toward danger despite copious, ongoing, and very well-grounded help - with cries of Help Me but THAT's too Hard. At the same time, I encounter so many families with DEEP regret that they now see was a failure to do difficult things.

    Mostly, and anyone who knows me know this, I blame the complete lack of coherence and consensus and support from the professional world leadership. But I refuse to be a hypocrite by saying that is the only factor. We parents do have to take responsibility, do some VERY hard things, and be better consumers and citizens if we want things in that professional world to change. And we often have to have more courage and be less self-involved in our own decision-making. My own failures have been a combination of cowardice and conceit: never the best parental attributes.

  23. Anyone else willing to pay to sit in on a Skype conversation between ELT and Tatyana?

  24. Ah, I posted my reply too soon, without reading the rest of the discussion (sorry Laura).

    I agree that fear is as the heart of most unhelpful responses. I'd extend that, fear and ignorance is at the heart of many things, racism and homophobia being the top on my list.

    Just for clarity, when I used trigger, I mean in the way it is commonly used in online communities, as in: "this content may make you (ie someone who is predisposed and has an ED) want to engage in ED-symptoms".

    Err, pay? Confused. Suddenly I feel like I have to rush and review all of my undergrad neuroscience notes!


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