Sunday, October 07, 2007

Sunday morning at NEDA

The NEDA conference is officially over, but I've still got a bag full of brochures and other stuff I collected here (and I'm not going home until tomorrow morning), so I thought I'd offer another deconstruction of e.d. programs and what they offer to parents.

The reason I'm doing this, by the way, is not just to make enemies (though I'm sure I am) but to try to offer one parent's view of what's on offer. I think it's especially important given a snippet of conversation I had yesterday with one of the long-time NEDA folks, whose comment about Maudsley was, "But you have to be a very, very special family to make that work, don't you?" This is, of course, the mainstream view, and of course it's completely erroneous. It's part of the disempowerment of parents within the eating disorders field that just burns my boat.

So. Within that context, it's not surprising to find brochures like the one I picked up from the Women's Center at Pine Grove, in Hattiesburg, Mississippi, a treatment facility that treats e.d.s, addictions, and both. Here are some of the phrases that jumped out at me from this 12-page glossy brochure: "Components of the treatment experience include understanding the disease process and the camouflaged self, helping women reclaim and celebrate their feminine spirit, empowering women to come to their own assistance. . . . " There's a family week--sounds good, right?--described as "40 hours of intensive therapy where the healing process between family members begins." OK, this center is for women strugglng with addiction as well as e.d.s, and does not seem geared toward adolescents. There are photos of lovely flower arrangements and wooden staircases. Under Amenities, the brochure says, "We offer gender-responsive treatment in a quiet, peaceful, and secluded environment." I'm not sure what gender-responsive treatment means. The next paragraph goes on: "We encourage our patients to take advantage of the nearby YMCA . . . a facility that includes weights, cardiovascular equipment, indoor track and pool, indoor racquetball and basketball course."

Hello? For women in the throes of anorexia?

Nowhere in this brochure is there any mention of food or eating. Nowhere. There is one line under "Components of Treatment" that says "Nutritional counseling." It's about halfway down a list that includes items like "Boundaries & Relationships," "Exercise & Fitness," and "Psychodrama."

I don't think so.


Anonymous said...

I do find much of the language from these ED centers you've mentioned in your last several posts highly problematic, especially that of the patient "choosing" to recover.

While I do think that a sufferer must accept the fact that they have a disorder and be receptive to addressing it, saying one "chooses" to get well is like saying one "chose" to get sick.

I do see the merits in FBT, and certainly you have a wealth of evidence to substantiate its effectiveness. But what treatment would you then suggest for the adult patient who lives independently of their family?

Harriet said...

Hi rachel,

I think we've had this disagreement before. I do not think a patient must accept the fact that she has a disorder and be receptive to addressing it. This is a fundamental issue to me, as eating disorders are known to be anosognosic--patients usually *cannot* acknowledge they have a disorder for a very long time. To make thiws a condition of treatment and recovery is cruel and causes endless and needless suffering.

My daughter did not acknowledge she had a problem when we began refeeding. It was not for many many months that she could do that. It was more than a year before she could say, honestly, "I want to get better."

Had we waited to hear this to begin treatment, she could have died. She certainly would have suffered much much more than she did (which was considerable).

I don't think FBT requires an adolescent. Anyone can do it with a person or people willing to act as the family, to take control of the cooking and eating for that temporary period of time until the person with the e.d. can do it for herself. I know of many families who have done it with adult children; they come back home and live for that period of time. i've heard of parents going to live with adult children for six months or longer in order to do this. I've heard of friends and other relatives stepping in to do FBT. There's no reason at all why FBT must be restricted to adolescents with intact nuclear families.

Whoever is doing it needs support and guidance, however. I would like to see everyone doing it have a coach, someone they could go to for strategies and reassurance and help when they need it.

Anonymous said...

I just want to say this, because it very much bothers me. I understand that you're an advocate of FBT, so of course that's going to be your perspective. Here's the thing (or maybe several): not everyone has a family or friends. In fact, people with eating disorders are notoriously self-isolating, particularly as the disease progresses. It's quite possible that an adult with an eating disorder might not have any friends at all and certainly not any willing to take on the burden of refeeding, which is considerable.

Also, I understand that you want parents involved, but I think it's kind of being willfully blind to assume that, just because parents want to be involved, they should be. There are a lot of really, really unsafe families with parents who would just love to get more involved. It doesn't mean they should be allowed within 50 miles of their children, whether actual children or adult children. Likewise, there are a lot of perfectly good mothers who happen to be involved with or related to men who are secretly sexually abusing their daughters. Not a nice reality, but, well, reality. This is part of why "keeping it in the family," particularly with regard to a disease so highly correlated with abuse, makes me really rather uncomfortable. I also wonder whether an approach that says "the important thing is refeeding and not causation" has a silencing effect on the sufferer down the line. Or even an "attribute all your problems during that period to the eating disorder" effect.

Anyway, I've been reading your site and others. My mom is working on starving herself to death and hopefully she won't be successful in that goal. I can't live with her and I couldn't do Maudsley anyway because I'm no better off with food than she is. I'm just less self-destructive about it. Just... these are some things I've been wanting to say. I think what worked for your family isn't necessarily the bright and shining light for all families. If my family had done Maudsley when I was starving myself down below 80 pounds as a teenager... my god. I think I would have ended it to get away from them. It was bad enough just living there.

mary said...

Some very good points are being made as to why a person with an ED may need treatment that considers that something 'bad' may have triggered their ED. I think there's a strong possibility that we now have several different types of ED's going on in the world. Still, we must be careful that we aren't defending an assumed guilt type of treatment. It has the potential to do more harm than good.
The primary anorexia may often begin as a developmental, often around puberty, when something goes amiss. If a parent notices a sudden loss of weight and then must jump through hoops, while they are being observed, and while their child is needing their support to keep eating then it's almost as if a crime is being committed! It also risks giving the ED a stronger foothold while the parents are being assumed guilty. You see, all growing bodies need nourishment...whether loved, abused, or otherwise. If a team takes the approach in which we parents are told "hands off" then we are participating in supporting this crime. It used to be called negligence to not feed your child. The growth years are very important and can affect the body for years to come. For us "good" parents to have to step back and feel guilty because it's a reality that there are bad parents is ridiculous. Good families and bad ones have eating disorders in them. We can't help that but what we can do is work to make sure that children always feel safe talking. There is a difference between good therapy and therapy which may be leading a sick mind astray.

Other's wait till later before developing an , say college, when they make a decision to drop some weight fearing they won't quite fit in with the body they have and thinking that they can manage it. We know of other connections...ocd which comes earlier for example. Next thing they know they have entered a merry go round that's not so much fun but very addicting.They might even be aware of the risk they are taking but they just can't stop. Ask anyone of them to see if they can stop purging anytime they want and they quickly learn that it's not so easy. My daughter tried for nearly a year on her own to stop before she came forward and said she needed help. Even then she wasn't sure she was going to make it. Her school did her a disservice by not finding a way to give us the information. Funny thing is they are right on the ball when fee bill came due...even though she was an adult. Makes you wonder the priorities of the world. Do they not take an ED seriously?
Psychological addictions are quite difficult to stop such as with purging or binging. If they are lucky enough to have a loving family asking the team how they can help then the response from the medical world needs to be that of support. This is not always true!
Firstly, the person with the problem is asked all sorts of questions in hopes of finding out "Why" or "what made you do this?" I was able to prepare my daughter for what they might want to know and told her that no matter what she had to put her recovery before anything. In the end we created our own treatment without a T or team though she hoped they'd help her and gave them a try. They did help her set goals for her future without an ED.
I was more than happy to encourage her and even help supported her with books and her own art therapy. I am for anything and everything that distracts them and helps them get well. On the other hand treatment centers shouldn't be selling art therapy just because they use it..they should be dealing with getting a body back to health.
To me she was worth everything in the world. I wanted her to find her own worth and yes, even invest herself. She HAD to recover. I asked her to come home and stay where those who knew her best could remind her who she was and who she was fighting for.
So, what makes me or Harriet or any other's who did FBT a loving families who deserved the benefit of the doubt? I'm not sure but I think that a true loving family stands apart from those who do harm. We don't over protect because we want help from experts *if* they know what they are doing. What I didn't want was my adult daughter being used as a guinea pig while they dragged out the process of recovery for years when they could actually help her get better sooner by giving her some ideas as to how to overcome her ED in the swiftest manner possible. I too feel that telling someone it will take years is a disservice to their ability to get their hands dirty and fight to win! I'd want this for anyone's child, not just my own!

As for the molesters and child abusers, I'll help you hang them so long as they are real.They make me sick too. Those who've lost their will to live because of them need to learn to honor themselves and eat and nourish themselves despite any wrongs. We need to help them do it until they can do it on their own if this is the case. I'm not sure asking them to relive the crimes is fair either, not for the sake of medical research. It's our job to help those people move forward.
Sometimes even good families aren't able to help.I think we need training and support for them and a full willingness to help them get the kind of care for their kids that we want for ours, wherever it might be. I've always been willing to help anyone find their strength during this battle and I even try to respect those who've had stubborn children and have gone the long route. I want what's in their child's best interest too as it affects us all.
I really needed to ramble on Harriet. I wish I could have afforded to go to the NEDA but it's not meant to be for me at this point. I am glad you and Laura are there! Keep going!

samsi77 said...

In response to the questions posed about how to handle situations where either parents or familiy members are not in th eposition to facilitate FBT or when family is not available I would suggest looking into programs that focus on eating disorder treatment and Dialectic Behavioral Therapy (DBT) because DBT is very much group oriented therefore allowing support of peers and a team as well as being skills based. As the manual and advocates of Maudsley and FBT have expressed no treatment is the right treatment for everyone as is the case here, in order to be effective there are some essential ingredients needed, this is not for everyone.

Harriet said...

Hello anonymous,

Thank you for posting; I really appreciate your raising these concerns.

I think of myself not so much as an advocate for FBT as for people with eating disorders. I'm an advocate for recovery, with as little suffering as possible. I'm an advocate for effective treatment. If someone developed a magic song tomorrow that cured anorexia, I'd be an advocate for that.

What I can't abide is treatment that prolongs suffering. It is not acceptable to me that people spend 5 or 10 years suffering with an e.d. *while they're getting top of the line treatment.*

At the moment, FBT has the best outcomes, and so I find myself advocating for that. It also makes a lot of sense to me for a variety of reasons. As samsi77 points out, no treatment is going to be perfect for everyone, and FBT is no exception. Some families are pathological, and I know this because I come from one of them. I left home at 16 because I thought I would have to kill myself if I spent another year at home. But I do believe this is the exception rather than the rule.

And I do believe that much of the time, parents are best placed to help their children, whether they're 11 or 19 or 25. They don't have to be perfect parents in order to do this, and the family doesn't have to look like the Cleaver family to pull this off. It helps, of course, if they're at least semifunctional emotionally.

I don't think FBT is a bright and shining light for everyone. But I do think it's a more humane and more effective treatment for a lot of people with e.d.s. Maybe not in your family's case . . . but then again, I don't know. I hope your mom finds a way through her issues before it's too late.

Mary, thanks for your perspective, as always.

Anonymous said...


I certainly hear what you're saying, but don't completely agree. Actually, there is not a higher prevalence of abuse among those w/ EDs than there is in the general population. Research has found that there are many w/ EDs that have traumatic plasts; research has also found there are many w/ EDs that don't have traumatic pasts. Research has found there are many w/ cancer that have traumatic pasts; research has also found there are many w/ cancer that don't have traumatic pasts. A lot of the current research is showing that traumatic pasts don't "cause" eating disorders. They might contribute in some way, and very possibly contribute to how long the recovery process is, but they are not the cause.

Each patients' situation needs to be assesed individually. So far, this hasn't been normally happening. Typically, a child comes into a program, and automatically parents are blamed and pushed away. Despite coming from a VERY dysfunctional family, I think this is very wrong. I think if all my therapists had helped my family become more functional, and taught them how to deal with my problems, I would've recovered long ago. Instead, I spent from ages 8 to 29 going in and out of hospitals, and at one point, was even told I wasn't allowed to speak with my family anymore.

I am in recovery now. I suffered for 21 yrs. I went to multiple hospitals and treatment centers, some Maudsley based and some w/ the traditional psychotherapy/"choose your recovery" methods. What, I think, ultimately led to my recovery was the combination of two programs - one Maudsley based and one not. I had good experiences at both of them and have difficulty hearing either criticized. I can recognize faults in both though. However, if I had a child that was suffering, the first thing I would turn to would be the Maudsley approach. There is not a chance I would let anybody tell me I couldn't help my child. And, if for some reason my help alone wasn't enough, I'd ask for help from a Maudsley based program.

My reason isn't because I think the other programs are evil. I think they have some very well meaning people working in them and often help in many ways. But, too often, they hinder and allow the disorder to last a lot longer.
If my child had cancer, I wouldn't sit around and wait to start chemo until we figured out the exact cause of the cancer. I would want the chemo to start IMMEDIATELY. That's how I see Maudsley. Refeeding starts IMMEDIATELY. Sitting around and talking about the causes just prolongs things. Interestingly, even Freud realized this, and he was the founder of psychoanalysis. He stated several times that, when working w/ phobias, the avoidance behavior HAS to be addressed first, then the "underlying causes." And anorexia can very easily be seen as a phobia.

Anyhow, I've rambled on a bit, but I wanted to say I definitely hear you. I had a dysfunctional family and my mother had eating problems also, but I was never able to get enough out of "talk therapy" in order to change my behaviors. I needed behavior therapy for that. THEN the talk therapy helped me to prevent relapse. Though, my talk therapy was still pretty behaviorally based.

I hope things improve for you & your mom soon.

Harriet said...

*So* well said.

You don't hear doctors advising against chemotherapy because it doesn't have a 100% success rate.

You'll notice that people still diet, despite its less than 5% success rate.

This is no different.

Anonymous said...

I am a night-shift nurse at a residential center. I have a daughter w/ anorexia and we are blessed FBT worked for our family. That was before Maudsley but it was similar tho we had more therapist assistance. Thank you for your blog and advocacy. My comments on this and earlier posts on residential programs because I know one first hand and I am proud of my work here even tho FBT worked for me.........

Horses and equine therapy are a joke among residential programs. A connection to an animal can have a therapeutic effect but a stray cat or at most a therapy-trained dog (like the ones that visit hospices) or even a fish does the job. Residential treatment is not a horseriding trip and the residents cant be expected to groom the horses of the owner for free. Puuuleeease...

Few residential centers would agree w/ Rogers that it takes a month for weight gain to start. Quick weight gain and refeeding the brain is essential goal here because a lot of ED symptoms go away once normal weight is re-established. Also the malnourished brain cannot process information so there is no way in hell to do therapy until weight gain occurs. Rogers seems to be thinking backasswards!!!!! In the center where I work, failure to gain weight in the first week means getting sent to the hospital where our MD works in acute care for forced feeding or else we are wasting the insurance benefits of the residents.

During my training I asked about the 'choose to recover' concept because it sounded odd to me. The answer I got was that there is a legal part in the 'choosing to recover' language. residential centers are not equipped like psych wards in hospitals and adult patients cannot be forced to remain there. So it is impossible for these centers to accept patients against their wishes because the patient can leave any time. Thats a big part of saying 'choose to recover'.

If you feel that the resident *should not* have a choice, then you need to consider the costs involved in enforcing containment as psych wards do: psych wards cost twice as much as residential treatment. So residential treatment requires someone to 'choose to recover' and willingly stay at the facility, in exchange for a reduction in costs relative to a place of forced confinement. For those adult women who seek treatment actively, and do not have to be forcefully confined, this translates into substantial cost savings.

The same legal constraints also get in the way of some residential centers applying forced refeeding. Thats what I was told too when I asked about it.

FBT for adolescents has a legal advantage over residential programs in that area because parents can enforce much more stringent rules of confinement onto their children. This is why in the adult-only residential program I work we were trained to recommend FBT when we get inquiring calls for children w/ EDs. It worked for my family so I believe it in passionately.

Since you asked 'gender-responsive treatment' usually means that the center takes one gender only (men or women but not both). Treatment addresses concerns specific to one gender but not the other.

Fitness is important for all women, and thats where the reference to the YMCA in Pine Groves brochure comes from I guess. I dont work there. Women w/ anorexia in the early phases are not allowed to engage in exercise that burns calories excessively, but basic stretching and and static exercises that stimulate the organs -the colon mostly- can help as the GI tract gets going again. Residents w/out EDs -Pine Grove is mixed not just EDs-, or residents w/ EDs at later stages probably go to a gym or YMCA w/ supervising therapists who monitor residents exercise only to the extent healthy for their physical condition, but also address the anxiety of residents prone to compulsive exercise. I dont work at Pine Grove so Im guessing what they do based on what we do here.

Art therapy, or other non-verbal communication, is uniquely helpful for women w/ trauma, who cannot articulate their past. They may draw pictures of dead babies but be unable to talk about having an abortion, or dance the experience of rape when they cannot talk about it. Non-verbal therapy is not a substitute for regular therapy but it provides a stage where women can share experiences they find impossible to talk about. Until youve seen first hand the paintings a of a 40 year old trauma victim who choose to remain mute dont knock art therapys potential to help..... if it wasnt for those paintings we woudlnt know where to start w/ her.

For children, art therapy is not therapy -its recreation only and rarely plays a part in treatment. We dont take children where I work so maybe Im wrong but children have less baggage so it sounds more like fun than therapy.

On more thing I remember from training that you never mention and our centers web site doesnt and rogers doesnt too. Residential centers start where FBT fails. If FBT can work its best. But when FBT fails, residential centers come in. At least the reputable ones that screen their residents and turn those that can benefit from FBT that way first. Thats why residential centers with good screening dont have as good a success rate since they take on harder cases that resisted FBT.

God bless. Florence -not my real name