Not about me

A couple of clarifications?

One, no one is attacking me personally.

Two, these aren't attacks. These are people reporting that THEY have been unfairly attacked.

I have no issue with a private forum for members of a professional organization. That's appropriate. No one is using it, as far as I can see, to bully or attack. What they are doing is discussing important issues in the field and of treatment and I'm all for that, really. It is an important view to the thinking and the variety of viewpoints that exist. It's also a good way to share information with others in the field. The problem isn't the forum, or the statements, it's the fact that there is genuine misunderstanding in the field among professionals about all of those issues. It is sad, really, to see how far apart people are and how little understand they have of other perspectives. So, Charlotte, I can reassure you that while there is intolerance that is just a reflection of real feelings out there in the field.

Parents are being heard, and they are upsetting and offending and scaring people. Some of that is inevitable, as the ideas held dear by many of us and the things that make some of us very angry are simply not going to be welcomed. Some of it is not, because some of the behaviors by parents have been rude, misguided, and personalized against individuals instead of on the IDEAS.

I don't control what parents do out there on the Wild West of the Internet, and I'll be darned if I'm going to apologize for anyone, but I do prefer that we all adopt a policy of sticking with criticizing ideas and not the people who hold them, and that we do so civilly, but all the while BE HEARD.

Don't stop speaking up!

Comments

  1. As I have said in the comments below, I apologise. I would also like to add that I am really not that scary.....

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  2. Ok, sorry, no more apologising. So how can we bring more people together? What worries me is that all this dissent is taking away time, money and resources from the real goal - getting help for eating disorder patients and their families.

    My cancer blip demonstrated so ably that informing the whole family and utilising them to help me was right at the top of the list of things to be done, alongside all the icky medical stuff like operations and chemo. I am positive there are huge amounts of dissent and differences in the oncology world but I noticed that every patient was treated with chemotherapy that was specifically tailored to them, their cancer and their reactions. If something wasn't working, alternatives were suggested and tried. Whilst chemotherapy is a pretty standard treatment for breast cancer, the actual cocktail of noxious poisons is not an "industry standard" and it is specifically tailored for the type of cancer, the grade of cancer, the size of the patient, the medical history of the patient etc etc etc.

    You can see where I am going with this, can't you?

    I am not an advocate of FBT and only FBT per se. I have seen time and time again that food is the basis - the operation to remove the cancer, if you like - and you need to add a different cocktail of support and therapy depending on the patient and their circumstances - the chemotherapy element.

    If you add in radiotherapy, just to make sure, which is specifically targeted on the affected area, I would use the analogy of normalised nutrition for life.

    Above all, I was given a list of things that may have contributed to my breast cancer - stress being a major factor - but there was certainly no blame or no shame about my eating/drinking/smoking/lifestyle and never a mention of the contributing stresses that my parents, my husband, my children, my job or my dogs may have made.

    Is this not a good model for eating disorders?

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    Replies
    1. You mean your dogs haven't had to go to family week to be taught how they are the cause of all your problems?

      Seriously, a very good analogy. Yes, I'm quite sure there are huge arguments within the oncology world. This is new technology, new science. The nature of academic researchers means that they are competitive beings wanting to be first to make that discovery, right in as many cases as possible. You wouldn't want your surgeon to have too much of the "oh sod it gene". BUT, they don't argue in front of the patient and they manage to include and value the family and other support of the patient so much better. Not to devalue the wonderful work being done in oncology - one of my two favourite people in the world is an oncology nurse - the fact that there is a heck of a lot more money going into oncology than there is into psychiatry certainly helps.

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  3. PS The whole cancer thing really hurts, physically and psychologically. That is not a reason not to get treatment.

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  4. I think that's exactly, exactly the right model.

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  5. Big Bad Brick Wall Mama (AKA Deb Seely)4:23 PM, March 11, 2012

    Laura, in the ten months since my D was discharged from the IP hospital I have had time to gain perspective. Through a lot of praying and introspection I have tried to decide what I could have done differently to have prevented the doctor from getting offended and going behind my back and without permission to contact my family and suggest taking my child away from me.

    At the time I felt that I had to speak my concerns about their triangulation with ED, and the very low target weight that they set for my D. I was very confused by their hostility towards me and my expressions. Now, let me say that I do have a temper issue and a more than passing acquaintance with sarcasm. I have replayed the conversations in my mind that were later used to label me as "paranoid", "hostile" and "argumentative". I can honestly say that up until the last two phone conversations I was surprisingly calm and spoke with a polite tone of voice, but I didn't back down. The last two I was still polite but I was firm and resolved. I take responsibility for choosing to speak out, but I think that no matter how the words were delivered, it would have caused the same kind of defensive reaction. The same accusations and the same actions by the doctor and therapist. If I could go back and do it again I probably would not have spoken up I probably would have just ducked my head, stayed low and waited for the first opportunity to remove my daughter from their care and things might have gone differently. But you know what they say about hind sight.

    I have noticed that there is something in the eating disorder world that I think is unique. Like Charlotte, I have experience with cancer. And I also have experience with juvenile bipolar. In both cases I was an advocate, once for myself and once for my son. In both cases my being informed and making decisions based on my own research was met with support from the medical professionals. But once I entered the world of eating disorders, everything changed. The same doctor I took my bipolar son to treated me differently when I sought help from him for my D's ED. The same message board that I went to for over ten years, became hostile towards me when I mentioned the ED, but they were more than supporting when my son's bipolar was mentioned. It makes no sense to me. I think that perhaps this phenomenon may be what you are seeing Laura. Yes, I agree 100% that we need to be advocates, and we need to be polite and articulate. Even in the face of hostility and ignorance. And I agree with Charlotte, that once you get past the basics of full nutrition each family must find a recovery road that is tailored just for them. But I do see that there is this weird thing that just seems to make medical professionals defensive and once that happens they don't seem to listen very well. I think that you have articulated this oddity very well Laura. I have thought about this too, and I wonder what it is that makes Dr. Locke and Dr. LeGrange and Dr. O'Toole and all of the other wonderful pro-FBT doctors and therapists so different. How can we harness that difference to help the others out there to see?

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  6. I think to be a parent of a very sick child with an eating disorder, to experience the blame, to be told to accept that what you thought was normal parenting actually made your child mentally ill and truly out of control. And to have no understanding of what you really did wrong that could lead to such a terrible problem. To see this not help your child in any way. And then to just change to a new team, to have the respect and empowerment and to see your child become well again through your own actions. Well, I think it's just human nature to be angry about this. And certainly, not to want other parents to go through that.

    I wonder if that's what is happening now. There are enough people who went through this and then found another way and the other way worked and built up the family. These people are just going to speak out. And those who were blaming and made us feel bad are going to hear about it. I'm sorry if they don't like it. I didn't like feeling like my parenting caused my child to lose her mind in the worst possible way either.

    I'm sorry if they are sad about this. But I think if they are really professional, they should take a step back and look at the evidence. Reflect on their own care. Search their souls and sign up for FBT training and see if they can learn something that might help the next child. Their job is to help people in the most effective way possible.

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  7. While I agree that generally it is best to criticize ideas, not people, in some instances eating disorder professionals have done shoddy scientific and professional work and they deserve to be criticized personally. Also, the professionals who criticize parents deserve a dose of their own medicine.

    The days when an eating disorder professional could deserve respect merely because she or he is a professional are over. Parents now have access over the Internet to all the journals and books published by eating disorder professionals. We are readily able to distinguish pseudointellectualism from reliable science and to hold professionals accountable for what they say and do.

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