Causing pain

I'm giving serious thought to the comments on yesterday's post. I'd appreciate your thoughts as I compose mine.


  1. I didn't comment yesterday, but I will today. I think it is strange to hear ED professionals say that the prognosis for patients without family involvement is so grim when they are usually so optimistic, even when acknowledging the dangers. I think it is fine to have private clinics that decide they aren't going to treat people without family involvement. Sort of a division of labor: we do things one way here so we can do that way the best, they do things another way over there the best, if we both did a little of each, we would both do a worse job at both. It is in generalizing this to the point where there are no treatment options for those without family involvement that is the problem. But I didn't think that was what was happening.

    When my mom first looked for a therapist for me, many people she called refused to see me unless my dad was also there. My dad is never going to do therapy with me, but it is fine for some people to refuse me on that basis. She just kept calling until she found someone who would help me without my dad. I do think it is reasonable to say "if you don't meet x criteria, you are not a good fit for our program." So you find a different program, one that fits better. Refusing you is better than letting you in and giving you treatment that doesn't fit you very well, because it requires that you find a better fit.

    I do, however, think it is rather short-sighted to generalize about the prognosis for patients without family involvement. Yes, FBT has the most favorable study outcomes, but that doesn't tell us everything we need to know or anything at all about any particular individual. I do not believe there is sufficient information to generalize prognosis for patients without family involvement.

    I don't know if FBT ever has "families" of friends and others who replace family for the sake of the treatment, but I think that could be a valuable area of expansion.

  2. Julie O'Toole wrote that "without a supportive adult caretaker, the prognosis for an eating-disordered child or young adult is grim." I agree. Treating a clinical eating disorder is a full-time job. It's like treating a patient in an emergency room, day after day, week after week, month after month. It requires full time care, and it requires an adult, whether it's the parents or some other adults. We don't expect children and young adults to treat themselves, without adult caretakers, for other serious, debilitating illnesses. Why would we for eating disorders?

  3. Family is not always biological. Not all bio families are able to or equipped to support recovery. (Dr O replied likewise in her own blog comments.)

    We all agree that day to day, non-clinical support in recovery is advantageous. That without this the prognosis is grim. However, that support can be from a best friend, a life partner, a group of friends tag teaming or even a foster family.

    I also beleive that healing strained relationships can aid in recovery from an eating disorder. But, that is a long term recovery goal IMO, not something that needs to be undertaken in the midst of eating disorder recovery.

    Healing and support go hand in hand.

  4. I think the maudsley approach is an excellent option for those fortunate enough to have either a supportive family, foster family, supportive family like friends, or any type of healthy support.

    The problem I have is that not everybody is so fortunate. Some people live a life of keeping others at a distance because of how much hurt we have experienced in life and as a result dont have any family like friends that we actually can trust.

    Maybe the root problems are more to do with building the trust of someone with an eating disorder because one of the reasons that secrecy is such a big deal is that the voice of an eating disordered person will tell them they cannot truly trust anyone because no one truly understands or has their best interest at heart...the battle between control and compassion is intense and very few people aside from very loving family members have the constitution to offer that support. Maybe the real problem is the at root the number of experts doctors and such that give up easily on those who are more troubled and are more difficult cases.

    I'll give you one example which is valid for me. Borderline Personality disorder is often connected to Anorexia, and yet many doctors and psychologists have admitted that borderline personality disordered patients are some of the most difficult to work with and often they are emotionally provoked by them. As such many doctors call those with Borderline personality disorder "uncurable" and give up on them.

    Since borderline personality disorder has been tied directly to anorexia as a symptom of borderline personality disorder, why wouldn't it be plausible to think that the medical experts and doctors and such could get frustrated with, and give up on many people who need the most help, who are hurting the most, and reaching out the most.

    So to say that without the support of a family unit recovery is not possible is a cruel thing to say for anyone who doesn't have a support like that. Its lonely enough and scary enough, and hopeless enough already in my head without thinking that i have no chance to recover and I dont want to hear things like

    "It just doesn’t work. Without a supportive adult caretaker, the prognosis for an eating-disordered child or young adult is grim."

    Because for me a person who struggles not to give up on a day to day person, this was anything but encouraging. Yaay for the parents who have a reason to hope for their children, and woe for all the suffering anorectics who never had the support of their parents and who may now believe they are never going to recover.

    That was why i was upset. Not at Laura personally who has only ever tried to understand cope with and educate others about this horrible disease, but rather at the limited perspective of the big picture, and how that mentality directly effects those suffering with the eating disorder.

    May many family members be inspired to support their sick daughters, sons, etc and may many girls like me realize that the choice is up to them. No one can inspire you to recover like you can when you decide you are worth it. Even after you decide you are worth it, recovery can be far more difficult than anyone who hasn't had an eating disorder can imagine. I for one wholly am aware of the consequences, want desperately to snap my finger and be a healthy weight and in no way am resistant to weight gain however due to the number of years where I did consciously restrict, and created habits for myself like after eating enough not to feel hunger anymore Ive programmed myself to feel nauseous and cant help but gag. Now though i try and try i cannot seem to change my habits and need a great deal more help and support to increase my awareness or even just help me to believe I can recover. Unfortunately I dont have that support so I teeter, and hearing the report that due to my situation with my family that my prognosis was grim did spend a good deal of yesterday crying.

  5. I think it needs to be said Laura that YOU didn't cause pain. Your message is intended as a message of hope. Your intentions speak very loudly and they speak of love and compassion. I know that you are just as anxious as anyone directly suffering from ana to find a cure or to find a way to help save people with ED's. Your message was intended for parents who need hope but was also read by those struggling with ANA and looking FOR hope.

    I want you to know that I never was upset with you directly, rather upset by what I considered a dangerous oversight. You on the other hand I consider a wonderful person who wants nothing more than to spread hope to those who have faced similar challenges.

    I thank you still for your desire to change the ED community and hope that even though sometimes these discussions can be emotionally volatile doesn't mean that your intentions are overlooked and even though the feedback was overwhelming to your original post, I still recognize that you are simply saying....parents be more involved. I would love to imagine a world where all family members are supportive but until i live in that world...i have to believe there are other options.

    Much love to you and I hope you are ok after the many seemingly negative responses. We all are discussing topics that are incredibly close to our hearts so these types of reactions are inevitable I would think.

  6. I think that the key (important) factor here is support - from people outside of the ED team (who really care about the person), as well professionals. Trying to recover in isolation is very, very difficult.

    For younger people (teens) such support will almost always be from family/parents, unless the child comes from an abusive family, which sometimes they do. For older people this is more difficult. If an ED progresses into adulthood and the sufferer is isolated then it is far, far harder to recover.

    I know of people in that position. They are in their 20s, 30s, 40s... and have had an ED for many years. They are totally isolated. They go into hospital to be re-fed, and then when they are discharged they relapse, in part because they are so isolated.

  7. sent by email by Anonymous:

    "I have wanted this topic to come up... I am a parent of a wonderful 15 yo. When she was diagnosed, I did quite a bit of research and talked to lots of "professionals" as I did not know other parents. I learned that there are parallels to the field of deaf education. (Bear with me).
    Parents of deaf children are still, today, faced with two "camps"/philosophies. Depending on who they meet first, someone who believes in an oral only approach or someone who believes in sign only, is there first experience in trying to figure out how to do the right thing for their newly diagnosed deaf child. There are reasonable folks, the majority, that will help the family understand the continuum of options; and who will help the parents understand that they are in for challenges but that ultimately, the parent is only doing their best. There are others who will, perhaps unintentionally, urge the parent to "do the right thing" and use oral/sign only or, god forbid, doom your child forever. Gu.ilt, guilt, guilt
    This is what I experienced - the first folks I talked to said "Maudsley is the only way to go - you are strong, you can do it, it is up to you to save your child". Then, others that I spoke with said "Oh, sure, go ahead and use Maudsley. Then when your child is older, come back to us and we will try and undo the damage you have done to your relationship with your child". Hmmmmm.. not helpful when a parent is in crisis watching their sweet child dissolve, in pain, in front of their eyes.
    The first experience we had with treatment was a residential center that mixed adolescents and adults - she had little supervision and became very skilled at learning how to support the ED that had consumed her. Next step - I took leave from work, set up a treatment team of doc, pdoc, family therapist, individual therapist, and nutritionist. For 4 months we ate together every day, evry two hours - Maudsley. She gained weight - it was so hard for her but she was motivated. She wanted to gain enough to join cross country (!!!!). She was hospitalized two times during those 4 months - but she did make progress. I don't believe, and neither does she, that trying this approach damaged our relationship. In fact, we felt lucky that we got to spend so much time together as most families don't have that opportunity. BUT even tho she gained the weight and started cross country, all that it took was a two day bout with the stomach flu to see her drop all the weight, end back up in the hospital on a ng tube, and not looking forward to doing it all over again. It was Heartbreaking for her - "Mom, I have to do it all again??????". Plus, losing the weight again triggered the ED as it felt better to her to be thinner. We started Maudsley again - by this time my supervisor was losin patience... hospitalized again! We then joined a program that had kids only, parents as part of the program, doing a form of "supervised Maudsley". Lasted two months, I finally returned back to work parttime but because I could not supervise 100 percent of the time, she started dropping. This time, her doc, a well known Maudsley proponent, advised me to identify a RTC that would take her long term for intensive treatment, adolescents only.

  8. (continued from other "Anonymous" above)

    ...Today my child is five hours away from me across the country - do I want that? No! But could I take care of her without more support, NO.
    Take away message - each family is different and each person with an ED is different. There is no ONE way to help. I miss my child every minute - but I know that she is in an excellent place with very loving professionals. I also now understand that she has struggled so much that a super intensive approach was needed.
    So Laura - I guess what the comments were about yesterday were about asking for acknowledgement of just that - not everyone has the perfect family, not everyone is impacted as severely as others, and that there are always options "out there". I am still new to all of this but I do believe that you do recognize that there is a continuum - and I trust that you will continue to acknowledge that Maudsley is part of that continuum.
    For anyone that comments on this, please be kind!
    Ultimately my child is going to grow up and all that I can hope is that she knows that I tried my best to understand how brutal ED is, and that I will support her as an adult no matter what."

  9. Dearest Anonymous - I know that you are right, Laura doesn't believe in "Maudsley or nothing" and that she is a very clear supporter of their being a "Plan B" for families and most importantly for the sufferer if the first approach doesn't work.
    I too tried Maudsley and for a myriad of reasons needed to send my child away from home after struggling and then experiencing a very serious relapse. While the admission wasn't perfect it saved her life and set us all on the road to further healing. I hope that this is the case with your dear daughter too.

  10. I find O'Toole off-putting, both her tone and her simple declarations, here and elsewhere. (Our family successfully used FBT. I have no experience with her or her clinic.)


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