All things to all people: barking and blogging

I've appreciated every comment these past few days on my blog posts. I'm honored that so many people read and feel moved to comment. Lots to consider and I've tried to do so thoughtfully. So many issues came up that each could be addressed at length but this is a blog and not a live conversation so I'll attempt it in bullet points.
  • Patients with healthy parents who intervene earlier and with better clinical support have a better prognosis.
  • The above is not a death sentence or meant as a discouragement to those who do not.
  • Prognosis is not destiny.
  • "Grim" is not hopeless.
  • Spreading the word on antibiotics as a first line of defense is not to say that they always work, are always appropriate, may not be too late, or don't have side effects.
  • This blog is by one parent for other parents about what some parents can do.
  • This blog is not meant to be all things to all people, nor do I aim to be balanced or comprehensive.
  • This blog is largely a rebuttal to what is commonly available, and as long as what I say here flies in the face of the norm that's what it is here for. When what I say becomes mainstream or uncontroversial I plan to retire because it will no longer be necessary.
  • I speak only for myself here.
  • I believe there is ALWAYS hope for full recovery.
  • I do not believe there is only one way to recovery.
  • Maudsley is not the only way or mode of parent involvement, or of refeeding.
  • Maudsley is not appropriate or possible for many situations.
  • It should still be the first thing considered and should be widely available - and isn't.
  • Parents should be told about Maudsley. They still rarely are.
  • I believe there are better ways and worse ways, simpler cases and more complex - and each family has unique strengths and weaknesses.
  • Food IS medicine. It is not the ONLY medicine. It is the one medicine that is necessary, however, and any treatment that does not assure full nutrition to full brain health full time is bad medicine.
  • I do not believe all families are good.
  • Some families suck.
  • I believe most families could do a better job and should.
  • Most eating disorders first arise in childhood and adolescence, and those are the parents we need to reach (and Dr. O'Toole was addressing). Adult patients have almost always had a longer course of illness and their parents have less agency in their lives. Preventing adult eating disorders is the goal of early intervention.
  • My intended audience is the vast majority of parents out there who are loving, competent, and ready to step up but are likely to be getting the message that they can't and shouldn't.
  • Those who read this and are not my intended audience may find it annoying, repetitive, pedantic, one-sided, dogmatic, and wrong-headed. I'm sorry.
  • Those parents who are getting their needs for support met, are getting evidence based advice, and are having success with their child's treatment are probably not going to find this blog because they aren't on a desperate google search for help.
  • Those parents who do find it, and find it helpful, make this worth it.
  • Those patients who didn't get the help they need deserve compassion, caring, and more help - not abandonment or defeatism. These are the situations I am trying in my small way to prevent before they happen.
  • Those patients who respond to the message that parents need to step us as personal criticism or condemnation need to ask themselves why. Wouldn't it be better to respond by saying "I wish I'd had this support. I should have had it. I hope others will get it. I'm glad parents are being held to account and asked to get involved whenever possible."
  • Child abuse, neglect, and mistreatment are unacceptable and change the landscape of treatment. Fortunately, these are rare exceptions.
  • If you are currently ill please reach out to someone - if not family then therapist, nutritionist, doctor, friends, co-workers, spiritual counselors, community leaders, social workers, fellow sufferers. Build a family where you can. Let others help build your support system. You need AND DESERVE society's support and encouragement more than anyone.
  • If you are currently ill I care, deeply, and do not mean to cause you harm or further your suffering. I cannot help you directly - I'm not a clinician - but I stand willing to help anyone's family or support system to find resources and information and support.
  • ** Added after Marcella's comment: YOU ARE RIGHT. The word "essential" was too absolute, although I took it as emphasis and not exclusion. Parents are "of the utmost importance" and not "a foundation without which an entire system or complex whole would collapse." I meant the former and not the latter.

Comments

  1. having thought quite a bit about your post I think what was shocking about it was the juxtoposition of the words "parents" and "essential".

    I do agree that for anyone to argue that anything that isn't available to everyone is essential is going to cause upset, and perhaps "very desirable" or "best practice" would have been more sensitive (in the orgiginal article as well as in your comment). However you went for the "essential" and it caused upset.

    It's odd how often different juxtopositions, which aren't any less troublesome to some, come up so much more often and are just ignored or accepted. Howabout "motivation on behalf of the client is essential" or "parental involvement is problematic"? How often have such statements been glossed over uncommented upon?

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  2. Laura, I love you!

    You are amazing. A lot of people were rather offended and you took it so well! I am swooning over here because your reaction was so reasonable and measured and compassionate. And in the context of mental health care, which makes it all the more amazing to me.

    In mental health care, as a patient, I have been taught to communicate in the ways you have just exemplified. However, I came to value that mode of communication on my own, despite mental health care. Inside of mental health care, though the professionals teach this assertive, respectful communication style, the majority of the professionals I have interacted with have not communicated like this.

    I do think that a huge part of why many of us got upset was, as marcella noted, the absolutism of the statement. As you fight for change in ED treatment and as I similarly fight for change, I do believe it is very important not to be absolutist about anything. Sometimes those words are used for emphasis, but when they aren't also literally accurate, we can hit a brick wall of defense. Even when the people who we try to open up to our ideas use absolutist language, I refuse to do the same, especially when dealing with people who, like teaching positive communication skills, teach the pitfalls of black-and-white thinking.

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  3. Thanks for the clarification Laura.

    To be fair, I would have had the same reaction if someone had said "Prozac is essential for recovery," or "CBT/DBT is essential to recovery" -- Like notpollyanna said, absolutism is not helpful especailly in the ED field.

    I was talking to my therapist about this yesterday and she said that there were many different paths of recovery. Maudsley may work flying colours for some people. Traditional nutritional rehabilitation and psychological support via a program might do wonders for others -- and for some it has.

    For me, taking recovery at my own pace was important. I wasn't able to gain weight at a rate of 1-2lbs/week -- I perhaps gained 1-2lbs/month and after two years, I am nearly weight restored. I haven't lost any weight since I started this process two years ago.

    During this time I have also been active in my life, finished half my undergraduate education, held down a job, volunteered and learned much more about myself and being an adult. . .

    My therapist told me that the weight was essential and important but the matter of "when" the weight went on and how fast (to a certain extent) was not a measure of how good my recovery was progressing. That I have solified other areas of my life has allowed me to keep the 22lbs I have gained on.

    I wanted to say this because it obviously flies in the face of Maudsley tenets and yet it DID work for me and it has worked for others. However, you could see that it could also be diasterous for most.

    The landscape of recovery for adults often looks different than for children. There is such a paucity of research in the ED field that there really is no "right way" to recover.

    Just thoughts :)

    A:)

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  4. Having read the original blog from Katrini, the reactions, and Laura's blog and comments, I wonder if this "discussion" of the importance of family would play out differently if the conversation started with an agreement about the necessity of symptomatic relief as the #1 priority in recovery from an eating disorder. The question then is HOW to help that occur successfully and as quickly as possible. For the majority of ED sufferers of any age, this is achieved with less anxiety and with a greater chance of sustainability when family members are an integral part of the treatment process. In my 30+ years as an ED clinician, I have encountered way fewer individuals who are able to climb their way out of the ED abyss on their own. For those who can, family intervention/involvement is not essential, though still may be helpful. But again, this conversation should be about what works (which I think was it's original intention) -- and utilizing the necessary resources to make sure that recovery occurs, which must start with restoring physical and nutritional well-being before other "issues" can be clarified or addressed.

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  5. What is essential, beyond food and time, is love, calmness, consistency and a carer's understanding the nature of eating disorders.

    WHO provides that...a family, a therapist, a friend, a spouse...may vary.

    THAT it is provided may be the golden key to lasting recovery.

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  6. Remember please, when Kartini Clinic providers talk about ED sufferers and about treatment, they are referring to CHILDREN and adolescents/youth to age 21-22 only. We are a PEDIATRIC eating disorder clinic and do not make statements about adults or what works for them.

    Julie O'Toole

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