December 14, 2011

The etiology of bad ideas

This post has been edited.

I published a rant today about this study:

Etiological role of childhood emotional trauma and neglect in adolescent anorexia nervosa: a cross-sectional questionnaire analysis.

The rant hurt someone's feelings and they struck out at me very angrily. Regardless of my reasons for my rant, it feels unkind to defend it, so I've deleted it. Frankly, I've ranted endlessly about the same topic for years and I'm not adding anything to the literature.

I see and hear and overhear so much needless pain every day. Every day I get another message from a parent who has spent years being kept at bay by clinicians with the argument that he or she has contributed to, caused, failed to prevent a dearly loved son or daughter's life-threatening mental illness. I try, often in vain, to convince that parent that eating disorders are not caused by parents and in fact what is needed is for the family to stand up and get to work learning about the illness, getting effective care, and changing lifestyle and priorities to provide an environment where recovery is first - for as long as it takes.

But still, my frustration can end up burning me out, too, and today I choose to delete my rant and say to Anonymous, I'm sorry.

Causing any more pain isn't my goal, ever.

11 comments:

  1. This study seems pretty innocent to me. It does not set off red flags like your needlessly angry post about it does.

    Small sample size? They examined ~120 participants. That is hardly a small sample size, and pretty typical for studies of this nature.

    No where in the article do the authors say "trauma causes eating disorders." Calm down.

    Let's face it. A lot of eating disordered patients have a history of some kind of trauma or childhood sexual abuse. This is not to say one causes the other, but the two often exist together. You obviously don't want to believe this. You claim patient memories must be tainted by their malnutrition or maybe just plain think they're lying about it. Either way, it comes off as rude and invalidating to people who have really had this experience, and know it has played a large role in their illness. So step off your high horse for a moment and realize that your opinion is not the end all be all. There are others with far more experience and training who think very differently. More importantly, there are people who have suffered the trauma and are dealing with the aftermath and its effect on their mental health who have to read your judgmental bullshit about how it's all "bad science."

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  2. Anonymous, care to put a name to your mean spirited remarks? I know "a lot" of eating disordered patients who didn't suffer any trauma or sexual abuse. I know one 9 year old who saw the movie Super Size Me and developed an eating disorder because she wanted to "eat healthy" like the movie said.

    Lots of events in a person's life can trigger an eating disorder if that person is biologically predisposed to develop one. Thousands of people are sexually and physically abused every year. Only 1% of the population develops an eating disorder...I am not invalidating your experience or your trigger, but perhaps your eating disorder would have developed anyway, due to another trigger besides abuse. Bad science IS bad, for everyone. Including those who have suffered abuse and those who haven't. And there are many "others with far more experience" who truly believe, based on scientific evidence that EDs are biologically based mental illnesses. (See the work of Drs. Locke and LaGrange, Dr. Janet Treasure, Dr. Walter Kaye to name a few).

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  3. I agree with anonymous that the study itself seems pretty benign. The problem, as I see it, is with the title, which is misleading and does not accurately summarize the study's findings.. This study did not demonstrate an etiological role of trauma; it showed a correlational role. If the study had been titled "Adolescents with AN-BP more likely to report emotional trauma than adolescents with AN" I would be fine with it.

    I do believe that these findings may be useful in terms of assessing patients and designing treatment plans. Regardless of etiological role (or lack thereof) of trauma, it is important for clinicians to be aware that patients with BP subtype are likely to have experienced what they perceive as emotional trauma.

    The problem is not with the study, but with the title of the study and with the false assumptions readers may draw from it.

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  4. Anonymous,

    You are angry and hostile. I hear you. I am sorry. You are right that the most important concern is those who are suffering, absolutely. I do not wish or mean to invalidate anyone's experience or beliefs about their mental health.

    I do want parents to know that their child's eating disorder is a serious brain-based disorder and not a sign that something horrible has necessarily happened to their child - this is what I and many parents are told and it keeps us from helping our kids. I do want clinicians to stop using the suspicion of sexual abuse and unknown trauma as a way of keeping parents at bay - again, this is very harmful to patients. I want the public to know that they need not treat eating disorder patients as victims.

    That said, abuse and trauma have a devastating effect, an effect that impacts mental health deeply. All those who have suffered abuse and trauma deserve protection, healing, and good mental health care. Eating disorder patients who have suffered abuse or experienced trauma can't afford to have that swept under the rug or invalidated: it must be faced and part of treatment.

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  5. Anonymous, like Laura I am a parent and therefore when I say that I agree with Laura am aware that I am open to the charge of "you would say that wouldn't you".

    As a parent I am distressed at the atmosphere of blame and suspicion that surrounds parents of children with eating disorders. Yes, that is in part because I don't like being blamed or thought of as suspicious. It challenges my identity in my primary role as a mother.

    It is also because such an atmosphere has seriously affected the quality of care given to my daughter and, I believe, prolonged her illness.

    I am not a perfect parent. I have made mistakes during the upbringing of both of my children which have had unfortunate consequences for them. However the biggest mistake was to be so traumatised by my daughter's illness, and so frightened that it was somehow my fault, that I was not able to fight for care for her when she needed it. I became what Janet Treasure in her book Skills Based Learning for Caring for A Loved One with an Eating Disorder http://www.amazon.co.uk/Skills-based-Learning-Caring-Eating-Disorder/dp/0415431581 calls a "Jelly Fish" too wrapped up in my own guilt and shame about the disorder and our failures in its treatment to be able to fight for what my daughter needed - active treatment for a disorder which at the time she was unable to acknowledge or fight against herself.

    I agree with you, this study of itself isn't shocking. It's worthy enough and the conclusions are useful. Abuse should always be considered to be a possibility in any vulnerable patient and the evidence seems to show that it is more likely in those with binge-purge type eating disorders than in control groups. Treatment providers should always be open to the possibility of abuse and have clear protocols and treatment pathways should they find themselves dealing with a client who has suffered such trauma.

    However they also need to be aware of the needs of primary caregivers for education, support and empathy, not just for their own sakes as human beings, but in particular because it is they who have to provide the majority of care for the sufferer. As Treasure says, "in units treating eating disorders staff burnout, sickness or difficulties with recruitment and staff continuity frequently occur" (SBL chapter 4 page 28). This is with paid staff who have such luxuries as training, days off, supervision, sleep.... In most systems most patients are treated as outpatients. In the UK the evidence based NICE guidelines state that "Most people with AN should be managed on an outpatient basis" and "the great majority of patients with bulimia nervosa can be treated as outpatients" http://www.nice.org.uk/nicemedia/pdf/cg009niceguidance.pdf This means that the patient's interactions are mainly with their family. 50 minutes of therapy once a week (if you are lucky) isn't going to be much good if the people surrounding the patient the rest of the time are cowed by guilt and so busy looking over their shoulders for real or imagined threats of accusations of misconduct that they are unable to adopt the compassionate, caring, calm sense of purpose that is necessary to support someone with an eating disorder.

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  6. Anonymous, I've deleted my post and posted an apology. I just don't have the stomach today. There is so much pain out there and today I have seen too much to want to cause any more.

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  7. My dear Laura Collins, you words were never meant to hurt or minimize anyone's pain and suffering. The value in this exchange is compassion and understanding and both are very important and vital to growth and change. I have no doubt that being traumatized by any abuse can be a source of terrible pain and trigger mental illness in biologically vulnerable people still the important discussion here is that eating disorders exist without these particular triggers. That distinction is very very important.

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  8. Oh dear. A very wise friend has just pointed out to me that we must be very aware of the vulnerable in society - the children, the elderly and the mentally unwell. We must also ensure that these people are listened to, despite our inclination to take some of the more fabulous outpourings with a pinch of salt.

    I have no doubt that some eating disorder sufferers are the victims of some terrible traumas and I would hate anyone to think that the parent community dismiss out of hand these dreadful happenings as not being part of a subsequent eating disorder. However, parents have for a long time been blamed and regarded suspiciously, when there has been no abuse, either physical or mental, and are no enmeshment issues. It is too easy to make this issue black and white and not to hear what others are saying.

    I believe (and shoot me down in flames, if you wish) that what is MOST important in eating disorders world is to ensure that patients get good treatment for the effects of malnutrition on the body and good care for their emotional well-being. At the moment, I believe we are spending too much time and energy on the what, why and how the eating disorder came about. Meanwhile people are dying, or living life in the shadows, or damaging irreparably their bones, their hearts, their immune systems. Prompt, effective and KIND treatment of an eating disorder is what is needed, not expending time and energy on finding out "why" whilst the patient remains desperately malnourished.

    Parents, for the most part, are a good bunch, doing the best they can under difficult circumstances. When our child is mortally ill, the majority of us do everything we can to heal them. However, it is vitally important to make sure that those patients who do not have supportive parents, get the care they need as a matter of urgency. They will need support of a different kind.

    Let's not tar all parents with the same brush. We must also not assume that all patients come from good, loving families.

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  9. Anonymous, I have a number of friends who have experienced trauma and also have the misfortune of suffering from an eating disorder. I'm one of those people myself, although I am lucky enough to be in recovery. I agree with Dr Ravin that although the study seems fairly harmless, the title is a little misleading. I just wanted to point out that for some people, particularly parents, these sorts of studies can invoke quite a PTSD-like reaction, because many parents have been deeply traumatised by watching their child dying and having professionals tell them that at best they can do nothing until the child is "ready" and at worst they are the cause of the problem. My own mother had next to nothing to do with my treatment because of her early encounters with these sorts of attitudes, and she had no Laura or FEAST to tell her they were incorrect and unhelpful. She did make one further attempt to learn more about my illness 2-3 years later, when I was 15. She bought a book from amazon which claimed to explain self harm and eating disorders in adolescence. The book was centred on the premise that all teenagers who exhibited these behaviours had been traumatised in some way. I think my mum had suffered more trauma than myself at that point, just from reading about what I must supposedly have gone through. I didn't experience any traumatic experiences myself until three years later.

    I guess I want to say that it's understandable that people get so utterly pissed off about studies like this which give out confusing, misleading messages. Laura wouldn't ever attack people with EDs or in recovery, she just wants to help us by providing information and support for our families which won't make them too scared to move an inch for fear of being accused of abuse. She's usually one of the least judgemental people I know. It's just that stuff like this is like a red lag to a bull sometimes. It is to me, often, because although no one ever accused me of abusing myself I understand a little of the pain my parents and others have been through due to this.

    (did I make up another animal character there or does that one exist?! Maybe I should've said rhino...)

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  10. Hi Laura, I have just read this post and the comments above. I didn't read your original analysis of the study you cite. I have some reservations about commenting on the topic of trauma and EDs because it is such an emotive subject amongst:

    1. People who have suffered trauma and have (or have had) an ED.
    2. Parents of children with EDs who have been wrongly accused of causing or contributing to their child's ED.
    3. Perhaps also the climicians who are doing their best to counsel ED patients who have been traumatised in one way or another.

    So, if I upset anyone by now attempting to be objective, I apologise in advance...

    There IS quite an extensive body of literature (published, peer-reviewed papers) which suggests significant levels of trauma in people with EDs, especially those with binge-purge type EDs. However, whether or not the trauma actually caused the ED, or whether it affects the capacity for full recovery is less clear. The precise aetiological significance of a link between trauma and EDs is thus questionable. The mediating factors highlighted have been PTSD and dissociation.

    The question of whether trauma therapy helps a person to recover or remain recovered from an ED is less clear. I do know of people who have had trauma therapy and who have felt that this has helped them to reduce binge-purge and self-harming behaviours. As far as I'm aware, good trauma therapists insist that a person is of a healthy weight before they have trauma therapy.

    However, the fact that SOME patients with binge-purge type EDs have suffered trauma, and perhaps even trauma in association with their parents, doesn't mean that ALL parents of children with such EDs should be automatically implicated in 'causing' their child's ED, or that the child should be removed from the parent. If parents are implicated in any way, then there should presumably be a full enquiry and fair analysis.

    My heart goes out to parents who have been erroneously blamed for causing their child's ED.

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  11. Oooh, I just discovered this discussion. So many excellent comments! I have a two points to add.

    First, I have a hard time believing that the screening for all types of traumatization is not already done when a clinician has an eating disorder patient, or a patient with any mental illness, for that matter. It would be part of taking a thorough history, would it not? If some clinicians do not do this, then they should be educated in how to do that thorough history. I highly doubt, though, that there a psychiatrist, psychologist or therapist out there who DOESN'T ask any patient of theirs, who is in their office for ANY reason, about any kind of previous trauma.

    My daughter was diagnosed AN-R at age 11, then manifested binge eating disorder/compulsive eating at age 18, tried laxatives because she couldn't vomit, had 5 AN-R relapses mixed in over the years and is now 24. She is on the road to recovery despite crippling comorbid conditions with the help of an excellent psychologist. She had during those 13 years of illness, 5 psychiatrists, 5 psychologists and 5 therapists. Every single one of them asked her about childhood trauma of any kind.

    In my daughter's case, there was no trauma of any kind, except for what has been inflicted on her by her mental illnesses, and let me tell you, THOSE traumas have been, and continue to be, severe and overwhelming. She was well grilled by all of her clinicians about the possibility of previous "sexual, physical, and emotional childhood traumatization". They had a hard time believing that there was none inflicted by others.

    Second, the level of traumatization was determined by "self-report" questionnaires. My daughter will tell you that there was a time during her illnesses when she felt my husband and I were horrible parents, notably when we were trying to get her to change her very self-destructive behaviors. Without a doubt, she would have died without our many interventions. For quite some time now, though, she has known how very hard we worked to help her and is very grateful for our support throughout all of her illness, even when she was pushing us away with all her might. It would seem to me that "self-reports" in a person with severe mental illness, who is most likely anosognosic, and whose brain and body are being starved, would be unreliable, especially when the reporting is about parents. I'd like to see a study where all the significant people in the lives of a person with AN are interviewed, not just the patient.

    And I'd like to thank you, Laura, for facing every day the unimaginable pain of parents and sufferers that you describe in your edited post above and for being able to do this incredibly valuable work. It is through your work, creating FEAST and Around the Dinner Table forum and the rest, that gave me the information and support that I needed to keep on trying to find effective treatment for my daughter when all hope was gone. I am inspired by you and deeply grateful to you.

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