July 31, 2011

Funny. Maybe weight report cards don't "work" because they're a bad idea

It would be funny if it was not actively harmful, but "Surprise! Weight report cards don't change weight."

It should be funny that people thought that telling parents their kids weigh more would make the parents change their child's weight. As if weight was some choice the parents were making, and that weight status tells us what the parents are doing in the first place. As if weight can be changed, like a bedtime or a recycling campaign. As if the largely arbitrary BMI scale tells us whether a child is healthy or not. and why.

It could be funny that the conclusion on seeing that the report cards didn't "work" was to think that the parents must not have received it, or not read it, or not understood it. Um.... really? Maybe they, as I would have, flipped the school the virtual bird and said "Heal thyself, educators." I might have added that they should try an experiment where they weigh the teachers, janitors, superintendents, and cafeteria staff and post it in the front hallway and see how that goes? Maybe then these educators might look up the actual science (and industry) of weight loss.

It is funny, you have to admit, that now that the shaming campaign isn't "working" the schools are doing things they ought to be doing anyway for ALL children: offering better quality food and keeping kids active. I hope they don't stop doing that when they find out that this won't "work" either at fixing people's weight, but I'm pretty sure they will then just start blaming parents again. Good luck with that.

Here's the thing: it really isn't funny. Not at all.

July 30, 2011

Eating Disorders in Schools blog

At times I struggle to know what to call my work. I'm not an eating disorders professional, but I am an activist in the eating disorders field - and honored to be featured in a blog by Robyn Hussa of Nor-Mal who is doing a series on what makes activists tick.

Necessary but not sufficient

People facing an eating disorder - the patient, the family, and the clinical team - have to hold a few necessary but insufficient facts in their head for a long time. Each of them are counterintuitive, complex, and difficult to achieve. Grasping one, no matter how enthusiastically, will not help unless you embrace the others, too:
  1. Eating disorders are a real brain problem, not an accumulation of wrong thoughts.
  2. The first order of business is normalizing nutrition, activity, and eating behaviors.
  3. The mental symptoms will get worse before they get better.
  4. The mental symptoms will outlast the visible and medically measurable symptoms.
  5. Full recovery is the goal.
  6. Relapse prevention is necessary.
Carrie's recent post on #4 is quite simply the best explanation I know of. Read it and don't let that important fact derail all your hard work on the others.

The role of anger

What is the role of anger in activism? This has been a topic of interest to me since the beginning of my work to improve how parents help their loved ones recover from eating disorders.

The debate in the Chronic Fatigue world is cautionary and relevant. I hope every activist in the ED world listens to this piece and sees the parallels I see.

I was and remain angry that families are marginalized, pathologized, patronized, and inappropriately scrutinized on the basis of a loved one's treatable mental illness. Who wouldn't be when I see lives lost, families destroyed, and friendships decimated by misguided treatment, inadequate public awareness, and absurd healthcare policy? Sure, I'm angry! These are preventable, needless, tragic errors and they are going on every day all over the world. I'm not angry because I want vindication or for my own satisfaction: I'm angry because this hurts the very patients we all care about.

I'm not just angry that people are ill, I'm angry that parents are hampered and even actively discouraged from the information and assistance that would prevent unnecessary pain and distress and chronic illness and death. If you're NOT angry about this I'm a little angry at you.

My approach to the anger is activism. Instead of burning my guts in impotent anger I refuse to take it personally any more. Instead of burning my bridges in corrosive rage I just keep showing up: not allowing the conversation about eating disorders to exclude our voices. I believe in being the unpleasant smell at a nice party, frankly. It is all right to make people feel uncomfortable. Growing up in an environment of social activism I'm used to being the one who doesn't laugh at an inside joke, doesn't salute the flag, doesn't let a bully pass, doesn't just ignore the slur. I'm used to being the one to say the Emperor's wardrobe is lacking, to demand an uninvited place at the table, to be going "too fast," being "too radical."

The defense is, too often, "why are you so angry?" As if anger was a bad thing. It isn't.

Anger turned to aggression is. Anger that renders us deaf to anything but our own words is. Anger that locks me into an extreme position is a win for the opposite position. Anger that has no outlet or is continually sneered at is likely to turn to simple bitterness. Anger that exhausts instead of motivates is all too common. Another kind of anger can isolate an activist onto an embattled island. Anger that just likes being angry, well, it doesn't help the cause. Not all kinds of productive anger can get along. And not all kinds of angers NEED to get along - there's a place for a range of us angry activists.

I began my work, and this post, with a goal: to help families. I was motivated by anger, and I am still.  I work continually to keep my anger from becoming a problem of its own, but the cure to my anger is change. If I didn't believe what we're all doing is bringing change, now and into the future, there's no use. I still believe in change.

July 29, 2011

Should she have gone to rehab?

"Rehab video" Winehouse
Rehab for addictions: does it work? 

It's assumed that addictions and mental health treatment require willpower and motivation to get better and that the ultimate in care is choosing to seek residential treatment: rehab. I remain skeptical of both ideas. I think it is worth asking whether "rehab" works as a treatment or is simply a resuscitation and even a way to keep the cycle of recovery and relapse active. I sincerely question whether willpower and motivation should be the price of admission to good care.
"Does overcoming addiction really depend on a person's decision and willpower to do so?"

"It's a complete myth. And it's one of the myths that has to be dispelled. One of the presumed tragedies of Amy Winehouse,—if this turns out to be related to drug and alcohol use—is that she didn't want to go to rehab. But rehab might not have been necessary. Maybe medical treatment from a personal doctor would have been an option.

The key to addiction treatment is that anyone who wants treatment gets effective treatment. And it doesn't depend on any power—higher power, lower power, willpower. It takes the level of compliance of anyone going to a doctor to get checked out.

When people realize it might be possible to get treatment without superhuman power, maybe it will make people want to seek treatment. It's a message of hope."

Another good piece on the medicine of addiction and changing professional approaches.

July 28, 2011

A day of reflection

The last day of our two week vacation in New York City is a day of reflection, in every sense of the word. Many ways to look forward, back, up and down.

July 26, 2011

Win some, lose some, keep trying

We know that eating disorders are biologically based, and that your risk is mostly influenced by the genes you are born with (53-83%, higher than any other mental illness). We don't know exactly how it works or what combination of genes, epigenetics, and environment are involved.

Think of an uncharted map, a large one. It may take a lot of identifying which genes DON'T affect risk but then every once in a while there's a hit, too. This is big. Genes won't explain everything - there are only a handful of diseases for which finding a single gene was all we needed to know - but knowing where to start will help us identify and change the environmental influences as well.

Keep going, researchers, and thank you!

July 25, 2011

Don't worry, be happy - with your body

Beware the easy assumptions.

Of course body dissatisfaction is associated with later developing an eating disorder. 

Unfortunately, the 'of course' for me and the 'of course' for many others in the ED community is very different, I'm afraid.

Most say 'of course people feel bad about their bodies with all the obsession with thinness and the obesity crisis and skinny models and sexualization of women and all that pressure leads to people dieting and making themselves sick.' In other words, the amount of pressure leads to greater and greater symptoms and dissatisfaction. Therefore: prevent the dissatisfaction and help people feel better about themselves and eating disorders will be less severe or even prevented.

That's not my 'of course.' I see it as obvious that you'd see greater symptoms of body dissatisfaction in people who later go on to have eating disorders as an early symptom of a brain that is pre-wired to latch onto such messages and magnify them no matter what the level of pressure. I see certain people's brains as attracted to such messages and the real problem is that society has pretty much adopted the thinking of a severe mental illness as if it was healthy and normal.

That normalization of mental illness makes society toxic even for those without the brain problem: causing us to eat poorly, mistreat our bodies, and treat ourselves and others with disrespect and unkindness. That normalization of mental illness masks treatable illness, delays diagnosis, stymies treatment, and undermines recovery.  This misunderstanding about the nature of eating disorders leads to misguided treatment, misguided public awareness campaigns, misguided research targets, and bad healthcare policy.

In my perpetual quest for the illustrative analogy, let me try these:

Putting happy face stickers on everything doesn't prevent depression.

Telling people not to worry so much about germs doesn't prevent OCDs.

Helping people love their bodies doesn't prevent eating disorders. It's lovely, it's good, it's positive, and it should be done - but people don't get eating disorders BECAUSE they don't like their bodies and it isn't treatment to teach them to love their bodies. We all need to do that anyway. We do need to prevent DIETING, which is the gateway drug to mental illness for those with a predisposition, but it doesn't seem to matter if the initial restriction was a deliberate diet or a flu or an overzealous track season - and recovery isn't that much different regardless of the initial reason.

We would not be surprised to learn that people who have a history of being sad later develop depression. We wouldn't consider it a "risk factor." We would not try to prevent depression by assigning clowns to every streetcorner or banning obituaries. We wouldn't treat depression by surrounding the patient with happiness.

We need to re-think the "of course." We desperately need more and better public awareness but we don't need another generation of eating disorder patients deprived of the right support while we spend our time cheering for size 7 models instead of size 0 and we change the shape of the Happy Face stickers we're slapping up everywhere. All over the world today there are parents getting on the Internet to search for help for their newly diagnosed child. What they need to hear is not "love your body" it is "make appointments with evidence-based eating disorder specialists, cancel your plans for the next six months, and make dinner. It's going to be a bumpy night."

July 23, 2011

Well meaning friends

THIS should never happen:

"My dd only told one trusted friend about her AN while she was ill, her oldest friend who lives down the street, a very empathetic girl, the perfect choice. At first it was great, because I could call this friend and ask her to come up and hang out--she was lovely distraction while d was suicidal. I also told the parents so I could answer any questions/misconceptions they had about the situation. When my d hissed how much she hated me, the friend wrote me a sweet supportive note about what a great mom I've been.

As d's rages kicked in, she would flee to friend's house and weep to the parents about my 'abuse'. After sooo much time went by, especially after d was w/r and looking 'fine', they began to believe everything she said. That I was abusing her. They were ready to take her in and call CPS on me. When I tried to explain, they said it was a 'he said/she said' situation and they had to protect the child. They didn't see any evidence of mental illness. D was eating normally. They wondered about me--I seemed delusional. I can't even tell you how degrading and demoralizing and downright scary this conversation was. For one thing,getting CPS involved would have been a nightmare. But more, it just really really hurt. This couple has known me for 20+ years; I was their d's Girl Scout leader; we've spent many many pleasant hours together. They trusted me with their own d. I thought they knew me. I thought they were my friends.

D is still friends. I haven't spoken to the parents since and don't even walk down their street. I really don't expect people to understand this illness so I have been very forgiving of the dumb things people say, unsupportive attitudes, avoidance, etc. This is the only case where I have actively ended a friendship."

This is our fault, people. All of us. For allowing families to have to face this illness alone. For there being no authoritative source out there to explain that eating disorders cause anosognosia and that parents who face that down are HEROES and need and deserve support, not suspicion. That friends can play a positive role if they don't become allies of ED, unknowingly.

When parents do the RIGHT thing they still face being seen as wrong and that isn't fair and isn't necessary and it is cruel. I've heard too many stories of families who were referred to social services - even had children temporarily removed from the home for doing the right thing. Parents shouldn't have to be going against conventional wisdom: we need to change conventional wisdom.

Today, the eating disorder field, in general, will not back us up. Most mental health services, legalities, custom, schools, and our friends are not likely to understand or help us, either.

This has to change. This should not happen and believe me, I hear it in different forms all the time.

July 22, 2011

AAP endorses AED guidelines

Change is about as nimble as a glacier, I find. In other words: not.

The great books and documents and ideas of a field come rarely and are difficult to dislodge, so I am particularly delighted when solid new documents roll out to create a new canon from which to quote and refer.

The Academy for Eating Disorders Critical Points for Early Recognition and Medical Risk Management in the Care of Individuals with Eating Disorders is such a document and long may it live.

Had this pamphlet been available for me to print out when my daughter was diagnosed it could have changed the course of her treatment and our family's orientation to the illness. Had our pediatrician already read it, a very different train of events. How I wish I had it when I went to interview psychotherapists!

I'm really pleased to see this pamphlet endorsed by The American Academy of Pediatrics has endorsed the guideline, (news story reprinted by F.E.A.S.T. by special permission) because we need more collaboration and less duplication out there. We need all the professional fields treating aspects of eating disorders to share information and share common understanding of the illness.

I'm also proud that F.E.A.S.T. and our members are working hard to help distribute the guideline around the world.

July 17, 2011

So wrong and so right, one after the other

Interesting. Dr. Snyderman gets it pretty much completely wrong one minute:

And then right the next:

The autism piece juxtaposition is all the more ironic because the use of the word environment includes prenatal environment and infection. There is no longer any mention of parenting or experiences. Are the parents good or bad? Competent or incompetent? Themselves showing traits of autism? No. We don't do that any more. Is this because a child's autism is unaffected by parenting or possible abuse - no, it is because we don't need to question that these things damage children and especially harm children with autism or other disorders.

But with eating disorders we blame the patient. For wanting to be thin, for feeling pressured, for experiencing too much stress. The eating disorder piece treats adult women's eating disorders as happening because of their failed responses to incidents in their life. There is one referernce to the brain, but it isn't used to mean that something is wrong with the brain but rather that the thoughts are ingrained.

Eating disorders are treatable but we need to start with smarter assumptions. The autism community fought long and hard to START at a different place so they can begin to get to a better place. We need that, too.

Why we do it

I'm proud to be part of F.E.A.S.T.'s work to empower parents around the world to  do the incredibly difficult parenting that an eating disorder diagnosis requires.

I'm on vacation right now and hoping to refresh and reflect and re-group. I happened to stop over at my messages last night and want to share an example of why all of us at F.E.A.S.T. do what we do - so that a family can do what IT needs to do:
Our story so far...
First sign.... April 2010 - d has just turned 11 and we are on holiday in Italy. I notice she is wanting to order salads in restaurants as opposed to pasta and pizza. I ask her what is going on and she says she wants to eat healthily. I tell her that her diet is already healthy and that she is not to just eat salads as she is a growing girl. She seems okay after this and eats a lot of Italian ice cream. 

In the summer holiday, she looks thinner but I put it down to her growing so much in height. She eats well at home and has never been picky or difficult with food. I reassure myself she's eating fine. In hindsight, she spent a lot of time in holiday clubs and clearly didn't eat enough. 

October 2010 we have family visiting and she seems to be eating all the time, very healthily but lots of food. No sweets though and she is very health conscious, asking so many questions about calories and fats!!! We discuss the dangers of dieting again and she asks why it is I have a problem with her wanting to be healthy and why I want her to eat 'junk food'!? Take her to doctor who says her weight is fine and that it's not unusual to look thinner during a growth spurt. I back down. Again I reassure myself that she is eating okay and that I'm paranoid. 

December 2010 I'm worried and confused. She is still eating a big dinner but now losing weight and something is not right.  I've asked her to keep a food diary and note down how she feels about eating. She complies, laughs and says I worry too much. I tell her I think there is a problem and that I will take her to the doctor again if she doesn't pay attention to eating more. She gains a few pounds and continues her diary for a couple of weeks. It later turns out that d is not eating at school. She is also skipping breakfast, pretending to have cereal when I'm in the shower in the morning. I feel stupid for having missed this.

Feb 2011 we have a massive confrontation about her eating and weight. She is now losing weight suddenly and quickly. Portions are getting small and she eats in a mechanical way. I get her height/weight chart out and shocked to realize she is 10lb down from the same time last year. I'm in a blind panic, certain we are facing an eating disorder. 

I take her to the doctor who now agrees and refers us to our local mental health team (we're in the UK). As we get home from the doctor, I serve d lunch and she bursts into tears and says she can't eat it. Her body is shaking with anxiety and she is begging me not to feed her. After that we can't get her to eat at all, even water is an issue. H and I are so scared.

I ring Mental health team and cry hysterically to get an emergency appointment. They see us a few days later. 

Hospital tells d to  'try and eat as much as you can' and and us to  'not make meal times more stressful by pushing food on her'. They send us home with a piece of paper, suggesting 3 meals and 2 snacks a day. Are they completely insane I think! We know what and when she needs to eat, it's that we can't get her to do it!!   They say it's important to take a balanced approach and go easy. What are they talking about? To H and I, going easy means watching d kill herself. 

A week later,  d is passing out, low BP and heart rate etc. It's all happening so quickly. We don't know what to do.

Early March 2011. I read all the books and articles I can get my hands on and quickly find FBT and also Laura's book. Hospital thinks it's too radical and keep talking about a more balanced approach, how d needs to want to eat and that we can't monitor her all the time. I disagree. They are not impresses and neither am I.

We start re-feeding regardless. Food is first. No school. I take time off work. D goes crazy. Violent, abusive, smacking her head on the wall, screaming etc. Even her voice seems to have changed. It's like a horror movie 'alien body snatch'. Where's my little girl gone?  We are so scared. H goes away for 3 weeks with work. With me off work I tell him to just go, I'll manage. Yeah right! Within a week I'm on my knees. ED is much stronger than I imagined.

Meanwhile the hospital has asked d about purging and exercising so many times that she is now determined to try this out (seems to be what other anorexics do so better get started!!). Starjumps and sit ups in her room and fingers down her throat. How quickly she learns. She is now even scared to swallow her saliva. We have to observe her 24/7. When she refuses to sleep in my room, I sleep on a mattress in the hall outside hers. People ask what it is we think she'll do in the middle of the night. That's the problem.... we really haven't got a clue, she is acting so crazy anything could happen.

April 2011. Hospital don't agree with our re-feeding regime. Even tell d that she is putting on weight very quickly, maybe too quickly. How can they say that to an anorexic child? We are told that her emotions have to catch up first and that I'm stressing her by pushing weight gain.

I give them all the FBT research I can find. They don't seem interested.  At this stage I'm deranged with exhaustion. 3 weeks without H, little sleep and an average of 8 hours a day doing magic plate. I feel so alone and d hates me, screaming daily that she wishes I would die :-(

Meanwhile therapists are searching through our family life to find out why d is so unhappy that she won't eat. They don't seem to believe that she is happy at school, has no previous history of OCD, has not been abused or traumatized. Of course I am labeled a total control freak of a mother, as I monitor d 24/7 and won't take psych's advise and back off with re-feeding. H and I are feeling upset and defensive. Did we really get her upbringing so wrong that we caused her illness? 

One therapist asks if H has OCD tendencies because his shoes look shiny and his dress pristine. I'm lost for words.  Someone else asks if it could be because d is an only child and feels left out and lonely? Still lost for words!

I'm beginning to think I'm trapped in a parallel universe full of crazy health care professionals. D (or ED) laps up the contradictions in approach and advice and uses them to fight back. We withdraw her from hospital appointments and start looking for other options. Re-feeding continues, d is making progress and is calming down at meal times.

May 2011 d back at school part time with supervised lunch and snack. Teachers very supportive. None of d's friends know. She manages to take part in most activities apart from sports and loves being back at school. We find a psych and therapist who are at least sympathetic to FBT. Still, they have no experience of FBT and say d probably has a mild case of anorexia and that's why it's working?! I just keep reading and feeding. 

June 2011, D is much better and doing well but still very resistant at times. Therapist recommends d manages own lunches and immediately she loses 4lb. I'm at breaking point. So tired and angry. Why did I let therapist talk me into this when my gut feel screamed NO? D suddenly much worse again. We seem to argue almost non stop about weight gain. I feel like a terrible mother a lot of the time. I read about 'Ghandi like' patience in other parents' re-feeding stories. That's clearly not me :-(

Weight is still not back on. It's hard going, she needs so many calories to gain just a pound. Deep sigh.  Now that the immediate life threatening panic is over, it is as if I can't cope with anything at all. I feel very guilty and I think a lot about how I might have caused my d's illness and fear it's all my fault. H, family and friends shake me hard and bring me back to my senses. Don't lose focus, don't drop the ball. It's not something you did! 

We now try EFT (Emotional Freedom Technique). D likes the therapist a lot and it seems more helpful to her than CBT.

July 2011. D is doing really well. Less push back from her and helping herself to food some of the time. T wants us to stop focusing on weight gain and just maintain. I ask ATDT if that sounds right, I'm worried to stop too soon and the responses I get support this. From d's weight/height chart I can see that today, she only weighs 2 pounds more than 18months ago when she was healthy and not anorexic. That can't be right. Surely she would have gained more under normal circumstances, given she is hitting puberty and developing quickly. We keep feeding, she needs to gain another 7lb at least to be back on her right growth/weight centile.

D gets happier with every pound she gains. She needs a lot of support and supervision but is getting stronger every day. Her sense of humor has returned and though she is very moody, there are lots of bright spells in between the clouds. It's early days still but we have come such a long way already. 

I am scared to think where we would have been, had we not found the FBT research, this site and Laura's book. During the worst confrontations with the mental health team (and d), I read Laura's book again and again to find the strength and focus to stick to our convictions and keep going. I just want to say thank you for that :-)
OK, so the stuff about my book makes me blush. I put our story out there because I knew it could be the story of so many, and it has been. Our family isn't special and our story isn't unique. In fact, I hear it now every day with all the colorful diversity of each loved one and their loving, imperfect, committed family!

July 16, 2011

"fear-induced feeding cessation" sure sounds like dieting to me!

"Fear-induced feeding cessation" sure sounds like dieting to me!

If we're looking for a reason for why a higher percentage of girls develop eating disorders (though the disorder is no less severe in a boy who does) then maybe these little rats are giving us a clue?

July 15, 2011

Jumping out of the speeding car

When I think about something too much I end up seeing analogies for it everywhere. The plague of the writer. I know that MY mind immediately made the connection between the mother who jumped out of her carjacked SUV with her baby in her arms and all the families I know of who are trying to decide what to do when they realize the treatment their child is getting may not only be failing but may be damaging as well.

“I’m not a hero. I’m just a mom. That’s all,”

I can't advise a mom to jump, but I defy anyone to judge her.

July 13, 2011

Blame is the new racism

I recently heard from an eating disorder treatment professional who says that she does not blame families, but says that "all" of her patients' families have problems that played a role in causing the illness. She doesn't consider that blaming the family, just explaining the illness.

I'm hearing this sort of thing more frequently now. The word "blame" is unacceptable; saying that someone is blaming someone else is almost like calling someone a racist. No one thinks of him or herself as a racist. No one seems to think of him or herself as "blaming" anyone for causing an eating disorder.

Here's the problem. It's still "blame" when you use more polite terms like "contribute to" and "part of the picture." A "family disorder" makes it seem so much more like everyone's in it together than "your toxic family caused this" but it's still saying that the family behaved in unhealthy and avoidable ways that had they not done, the eating disorder wouldn't have happened. It's still saying that you are broken and need to be fixed - just on the basis of there being an eating disorder in the family.

A LOT of the problem here is seeing an eating disorder as a set of ideas and thoughts and behaviors and not the presence of a distinct brain problem. In math and statistics it is the difference between discrete and continuous data. If you see an eating disorder as an accumulation of experiences and thoughts then of course you would logically see the cause as being environmental and cumulative. It also means that digging someone out of that accumulated experience requires examination of all those influences and integrating this into the whole person's experience and self-knowledge.

Well, I don't see eating disorders that way and I think the above conception of the issue leads to demonstrably poor treatment, iatrogenic harm, and poor results. Because I see an eating disorder as a discrete problem with the brain that is environmentally influenced, I see the symptoms as just that. The drive to avoid food looks like a logical progression from environmental pressures to be thin, but I believe the drive is biological and the explanation is one our society provides. We used to provide other explanations, like religious asceticism or Freudian sublimation or feminist embodiment. The poor self-esteem looks like influence from environment but can also be seen as an expected symptom of the depression that often accompanies malnourishment. The distancing from others, misinterpreting the motives and social cues of one's family, these are also brain phenomena very common in people low on food.

The cognitive symptoms of an eating disorder, the proprioceptive problems, the body schema issues, the emotional swings - when there's an eating disorder it is hard to distinguish between people who have suffered from a high load of environmental influences and those with none. The symptoms are very similar in people from all over the world, different cultures, different ages, men and women. Recovered people, by contrast, are genuinely individual and unique.

People are so afraid now of the word "blame," but breaking it up into little parts and saying "you didn't mean to" or "one part of the bigger picture" doesn't make it more palatable. Better to go back to the word blame, which it is, so we can go back together to the drawing board here:

Parents don't cause eating disorders. Patients don't cause their own eating disorders. They're an illness, and they are treatable - but not if you're on a witch hunt for causes that have been thoroughly discredited.

July 10, 2011

Author seeks interviewees

The author, Carrie Arnold, may be looking for you:

  • someone who has been diagnosed with anorexia but lives in a non-Western culture (or a culture without the extreme pressures to be thin)
  • someone who can talk about how learning about ED science has been helpful in their recovery
  • a parent/child who have both had anorexia. I'd like to find a duo in which both people are willing to be interviewed, but I'm also interested in talking to single members where this is the case.
  • someone who has experienced exercise addictions/compulsions as part of their ED
  • someone who has been diagnosed with anorexia that then morphed into bulimia/BED
  • someone who can talk about relapse and what they've learned
  • someone who with a history of anorexia who is worried about passing anorexia on to their children

July 8, 2011

Oh, we don't do that any more, do we?

I have been set a challenge by a friend in the eating disorders field. I'd like your help. This friend contends that my views on eating disorders (brain disorder, parents don't cause, patients don't choose, normalized nutrition first intervention) are not controversial and in fact are the standard of care for modern eating disorder specialists.

Help me gather examples of recent statements by ED specialists that contradict those ideas.

July 7, 2011

Soft, squishy science

There are days when I'm speechless in the face of well-meaning nonsense. Luckily, I have friends who can find the words. 

"Until we can, as a society, change the perceptions of eating disorders, as they did with autism and schizophrenia, we are going to continue to be the subject of soft science."  

Good luck tomorrow, C. We'll make sure to save a little society changing for next week.

July 5, 2011

I thought I would feel better

Comes up frequently among parents of eating disorder patients: we work like crazy to get things to a better place and then just when things are on an upswing instead of feeling better we feel worse. MUCH worse. Broken.

I felt this deeply. Like something was permanently broken, irretrievable, and I envisioned the future as filled with loss and worry. I hear parents talk about this a lot and now I see it as a natural stage of family recovery. We are built to do the heroic work of parenting in a crisis and we save the pain for later - oh, what pain. It helps to have role models during this completely natural falling apart after the most brutal parts of caregiving. We have to keep our strength, and keep our focus, because ED may have abated but he's going to take advantage and come back if we allow ourselves to be so permanently damaged and therefore unwilling to stay the course ALL the way and when needed.

My role models? The parents on the ATDT forum, who so movingly describe that collapse after crisis and then the repair: I thought I would feel better.

Are you falling apart even though things are better? You are not alone, and it will get better!!

July 4, 2011

Early intervention saves lives

"The outcome of anorexia nervosa is predicted by body mass index (BMI), physical risk, age and illness duration."

In other words the chance of recovery isn't determined by by "cause" or by "treatment modality" or by "motivation to change." It's successful intervention - catching it early, getting them healthy, keeping them in treatment.

We have to stop hiding from the fact that "Recovery from anorexia nervosa becomes much less likely the longer the illness has persisted."

The first three years are your window after which the chances of recovery are small. Really small. NO therapy has good rates of success after the illness has been in place for a while. Older patients do worse in Family-Based Maudsley and ALL treatments because they've been ill longer.

I say this not to depress or deter those who have not been able to intervene early, or whose first attempts at treatment were not successful - but to try to catch as many families as early as possible and beg them to act assertively and not delay. Don't whine, don't flinch, don't watch and wait. And don't settle for snake oil.

Parents new to this diagnosis: your chance of finding appropriate and effective treatment the first place you look is really quite small. The chance that you already know most of what you need to know is nil. When your loved one has an eating disorder your regularly scheduled life is cancelled, or should be, radically and for a long, long time. Anyone who tells you otherwise is not your friend. Will it be forever? No, unless you fail. And yes, parents CAN fail. Fail to act, fail to trust the right people, fail to do our own homework, fail to make the best decisions, fail to maintain the stamina to do what needs to be done.

I hear it all the time. "I wish I'd acted sooner." "I wish I'd known." These are really tragic stories, people. These are the same people who six months or two years earlier thought I was exaggerating and that their child wasn't that sick. They thought their local provider "connected" with their child or that it would "kill" their son or daughter to miss school or "I just can't bear to make her gain weight."

We don't say that about a tumor and we shouldn't say it about an eating disorder. I know that analogy offends people but until I find another one that will work to help people see that the early symptoms of an eating disorder are an OPPORTUNITY to intervene and not a milder form, I'm going to keep using it.

Does this mean give up on patients ill longer than three years? Hell no. These patients deserve even MORE urgency, not hopelessness or palliative care.

July 3, 2011

When Food is Family and Family is Perplexed

At the risk of bringing more pre-publication buzz to a book I will not be promoting, it would be silly to ignore the very telling furor that When Food Is Family has created. I'm delighted to see this tumult - I really believe that sunlight is the best disinfectant. These ideas need to be aired and discussed. There's a reason this promotion is making some people SO angry and others so defensive.

A few years ago this kind of melee - on the Academy for Eating Disorders online forum, Around the Dinner Table Forum, another private professional forum, on blogs and on Facebook simply could not have happened. A book would get published, people might grumble, people might cheer, but those on different sides of interpreting it would neither meet nor hear the other side. Or, in this case, sides - as there are a few. When this book is published and media stories come out, that social networking will no doubt follow it: these are indeed controversial ideas and SHOULD BE.

This unpleasantness has been good because it has reached people who consider the premise and pre-publication materials "shocking" and also those who were shocked by the shock. The author herself got involved. The conversation keeps feeding back into former arguments - making those conversations have more meaning.

My opinion of theories of eating disorder causation that focus on parenting are well-known. I think they are nonsense, demonstrably so, and do more to tell me about the science and history and training education of the theorist than anything. I'm not distracted by the code words "contribute to" or "trigger" or "help explain" or "can be prevented by." I'm not even offended by them - I'm past that. What I do feel is deep concern for the families who encounter these ideas without the benefit of a larger knowledge of the field and eating disorders. The unprepared parent - and most of us are - can be not only distracted but genuinely crippled  - leaving them disempowered to find and use the information and support they really DO need.

Here's what's great, though. The debate is maturing. People with whom I've debated these topics before have come forward and their arguments have developed and changed - more progress. Unfortunately, most of this debate is not going on in public. I wish I could show you the comments on the Academy for Eating Disorders website, in particular, but I can't. I believe the parent community would be apoplectic to hear what is being said about families on that forum - not only that it is said but that the AED membership and administration find it acceptable. I think you would be furious. Yes, there are dissenting views - several professionals have come forward to speak clearly and cogently against attachment theories and dysfunctional families and "what the majority of clinicians know to be true."  The backlash against those comments has been bitter and filled with affront and not that great a grasp of the issues.

These theories would never be tolerated on a professional forum about autism or schizophrenia or depression - but they are there because they truly aren't controversial there, but objecting to them is.

I wish the conversation was going on in public so we could really clear up some mistaken ideas about what people like myself believe. If I could really engage these people and get them talking to the professionals I know best we could defuse some of that reactivity and get a real conversation going - and I might learn more. Now, thought, the distortions and misunderstandings of the argument against parent causation of eating disorders are so many and so often repeated that I hardly know where to start.

Yes, I do. I've been doing it for years. The difference is that those of the other point of view just weren't listening or deigning to discuss it. I'm happy to report that is starting to happen. I'm sure one or two of you reading this now are only doing so out of anger at what you've heard I said. Welcome to the community. Meet some of my friends and really hear them, too. We're not the chronically angry, misguided people you may think.

I welcome you to truly hear what I and others are trying to say to you: "attachment issues" where they exist are an expected effect, not necessarily a cause of the phenomena you are observing. You are, very often, making it worse and leading families away from the help we really need to help our kids recover. The witch hunt to find reasons to hold on to parent-blaming needs to end. Patients die for lack of appropriate treatment. It's not a matter of opinion, it's life or death decision-making.

When Books are Wrong
Around the Dinner Table Cicada calls

Ask not what can you tell me - Ask what I can find out for myself

My thoughts exactly - passionately and with cheering - except add "parents and" to "patients."

It is a new era where patients and their families no longer have to, and really CAN NOT pursue healthcare by going to the nearest treatment provider and asking "what are you going to do?"

It is time for us to start by asking ourselves "where shall I start learning?"

Between the massive amounts of information out there, the scarcity of specialists, and the new capability of the Internet to share and aggregate information quickly - the "healthcare system" has to now include the public. Patients without Internet skills - or family members with those skills - can no longer be considered to have full healthcare access.

July 2, 2011

When the eating disorder tears a marriage apart

I hear it a great deal: how an eating disorder divides parents. If they are happily married and well-functioning a loved one's eating disorder is going to press them to the limit. If not.... the eating disorder is going to use that discord to feed itself. I have seen ED use families so horribly.

Perhaps that's why this Sample Letter for a Spouse touched me so much.