April 30, 2010

Snap!

I've had a very challenging week, and accidentally cheered myself up when I happened to stumble on the video I produced a few years ago, on a page at the AED site. If you are new to this blog you may not have seen it.

Watching these smart people say smart things goes a long way toward clearing some cobwebs off my courage and fighting spirit:

Do Parents Cause Eating Disorders?

Below my video are several absolutely essential videos produced by Jane Cawley at Maudsley Parents.

Now I'm in a good mood and ready to roar!

April 28, 2010

Front row to history, wearing the right shoes

I was, literally, in the front row at the Press Conference at the U.S. Capitol yesterday morning to witness the introduction of the FREED Act in the Senate. History in the making.

EDC Lobby Day 2010. One day, five appointments at Congressional offices, one Press Conference, one Congressional Briefing, four dashes across the breadth of the Capitol, countless staircases, five times through security. Do my feet hurt? Only a little more than every bone in my body, thank you.

Met a Senator! Had the honor of thanking two wonderful moms (Wendy and Judy) in person for what they do for the parent community. Saw so many people that I already admire and enjoy: like Chevese, Kathleen, Jeanine (met the baby!), and of course Kitty "Woo-Hoo" Westin, Shannon "Congress today, CNN tomorrow", Gail, Cindy, Joe "The word is outrage," and Eileen (whose charming son saved me a mile and half stumble!).

Met a "friend" I hadn't yet "met" in person and so glad: Leslie.

My team from VA was OUTSTANDING in their teamwork and stamina and passion: Matt "Stairmaster," Carrie "Frost your cupcake," Lisa "I've got the numbers and know how to use them," Kimberly "Birthday, schmirthday: we've got a bill to pass.", and Elizabeth "Today. Priceless." The other Virginia team led by the marvelous Ashley came in beaming and with good news.

Special shout-out to Beth "Line? What line? We have official business here!"

The speakers at the morning Press Conference were outstanding and set the marvelous tone for the whole day, and the briefing at the end of the day had it all: urgency, action, and hope. Not to mention extemporaneous content straight off the national political scene.

Oh, and the weather. So grateful. Aside from saving us from dripping and slipping on the marble floors of Congress it saved me from an infamous black shoe/brown trouser incident for which Cindy would never have forgiven me.

April 27, 2010

The only failure

I'm at Lobby Day activities in Washington DC today, and noting again the wisdom shared by the community at Around the Dinner Table, this bit from "Neverloseheart:"
Hello Yorksbelle, Just a quick note to send support to you! EDs are difficult illnesses! Though we parents can sometimes feel guilty if our d's need inpatient care, please remember that you are ensuring your d receives care and that is the most important thing! Your d will get better if you are persistent and don't give up! For us, we had 7 hospitalizations in the first 7 months (suicidal X5, ED X2)--I felt pretty awful at first but after awhile I realized that the only failure would be failure to keep her safe.

Looking back on this now, with a new team in place and my d well into the process of recovery, I don't feel like a failure at all! She was just too sick to be at home. I also realized I wasn't getting the professional advice, support and medications to help her stay safely at home.

As long as you hang in there with your d and use all the resources you have available, you ARE helping your d to recover. Think of it as any other type of project, if you are in charge of the project, your job is to make sure that it gets done and not necessarily to do it all yourself!! If some parts of the project require some assistance, well, it would be wrong NOT to get the help.

Best wishes and (((((hugs))))) to you and your d during this tough time!!!

April 26, 2010

Giving advice

I really like this:

The Best Way to Give Advice: Offer Information

It strikes me that this is the kind of advice *I* take the most to heart and makes me feel most respected by the other person. I think the team at Around the Dinner Table does this darn well. I chafe when people tell me what to do, or how to do it. When they give me information on what they or others have done I feel trusted to make a good decision and less like I'm being judged by my decision.

The times I've failed my friends have been when I was too strident or directive - usually in an emotional attachment to the issue or too personal a connection to it. I think I'm better at dealing with the decisions others make, too, when I feel like I've put in my two cents but not feeling the other person feels judged negatively by me for whatever decision they make.

Harder to do all this with parenting, of course, but I'm thinking now that I have a half-adult child and an adult child it is time to do more information and experience giving and less telling people what to do. My kids have earned it!

April 24, 2010

Tend and befriend

One of those observations that makes so many things make sense:

Under Threat, Women Bond, Men Withdraw

Of course, not all women 'tend and befriend' and not all men withdraw and we all do some of both in our lives, but interesting line of thinking, indeed.

April 22, 2010

Lost

Today I heard from a mother whose 30-year old daughter's life was taken by anorexia in March. The mother and I had had a conversation a year ago and she wrote to let me know.

I am so sorry.

This illness kills. This is a cruel, cruel disease and as this mother called it: "evil."

We have to try harder. Meanwhile, we need to be there for the families who suffer this tragic loss.

April 21, 2010

‘Mum made me anorexic'

The media is giving me all sorts of excellent starting points to discuss how parents and eating disorders intersect.

‘Mum made me anorexic’ is a provocative title for a flawed article, but bears discussion.

How one reads this kind of narrative depends on how you look at the illness. If, as I do, you read this and see two people with similar predispositions to an illness, then you probably feel sympathy for both mother and father. You may, as I do, see a wonderful heroism in this daughter's recovery despite her environment and a tragedy in her mother's continued illness. I know I find myself wishing that this mother had been properly treated so she could have been able to stop her daughter's mental illness in its tracks or even kept her from triggering it in the first place. But I also feel such sadness at this mother's suffering.

If you think of eating disorders as something that can be given like a cold, or learned like a habit, you would not see in this story confirmation of the genetic basis of this predisposition. You may see this mother as cruel and the daughter as a victim. I see the illness as cruel and both mother and daughter as sufferers.

If you think anorexia is a matter of choice you may feel angry at this mother for refusing to choose to be well and sympathy for the daughter for choosing it. I don't. I read in this story about a mother trapped in a horrific mental condition and unable to properly nurture her daughter who has a similar predisposition.

If you think of anorexia as a desire to lose weight, and recovery as a desire to gain a normal weight, then you may think that this daughter as wise and the mother as hopelessly vain. The daughter does sound wise, and in that wisdom has let her mother's problems be separate from her own. But not for a moment do I think vanity plays any role whatsover in this family's tragedy.

I applaud this daughter and mother for telling their story, though I disagree with them both on how to read it - at least as described in this article. I honor their work to find their way, though I hope that a newer generation of treatment will treat both mothers and daughters simultaneously and with compassion.

April 20, 2010

Survey for Australian families



Caring for someone with an eating disorder: Different perspectives


My name is Kerri Coomber and I am completing a PhD in Psychology looking at the experience of caring for someone recovering from an eating disorder. While we now know a lot about what this is like, we don’t know whether the person in recovery and the carer see the experience of recovery and caregiving similarly or whether their experience is different. I’d like to invite you to share your perspective.

Both carer and the person with an eating disorder would each complete a short questionnaire. You won’t see each other’s responses and what you say will have any identifying information kept separate. I will give each of you a code number so I can match up your questionnaires.

The carer questionnaire ask you about how the eating disorder affects you, as a carer, how you deal with everyday problems related to the eating disorder, and how your general health has been lately. This questionnaire will take you approximately 20 minutes to complete.

The questionnaire that the person with an eating disorder will complete will ask you about your eating disorder, where you feel you are on the road to recovery, and how you think the eating disorder affects your carer. This questionnaire will take you about 20 to 30 minutes to complete.

If you have an eating disorder, or you are a carer of someone with an eating disorder and you would like to take part please email me at kcoomber@deakin.edu.au, or phone me on (03) 5227 8436. Can you please let me know your address so I can send you the questionnaires, the age of the person who has an eating disorder, and whether the person with an eating disorder has bulimia nervosa or anorexia nervosa. The last two pieces of information are needed to make sure I send you the appropriate version of the questionnaires.

April 16, 2010

Crossing the line

All Women Worry About Getting Fat

Well, no, TEN WOMEN had reactions to the suggestion that their body type was larger than it is. I can think of all sorts of reasons for that, but this isn't one of them: "Even though they claim they don't care about body issues...their brains are showing that it really bugs them to think about the prospect of being overweight," That is some seriously condescending, smarmy, sexist, and unscientific talk, there, buddy.

If you tell me to imagine that I'm a pomegranate it is probably going to perplex my brain - if I'm not a pomegranate. There is an assumption here that the subjects were upset, and should be upset, when maybe they were just surprised. Maybe it was envy or hope. Maybe the shape they saw reminded them of their mother.

But I'll give you this: maybe you are measuring horror - at stigma. If you tell me that I'm a stigmatized body shape, you're going to light up my brain. Next you should do a study on how doing and publishing studies on how terrified we are all of fat (and how we lie about it) causes us to react to images of researchers.

This kind of research makes my blood boil because it actually creates more stigma and distracts from all the things we could be doing with research dollars and grad student stipends to really help people. "Aha! You hate fat people don't you? If not, you should: everyone's doing it!"

But if there was any shred of meaning to this research and article before, this sentence replaces any sense with the absurd: "Overall, the results should caution women about the risks of crossing the line from concern about body image into a full-blown eating disorder, Allen said."

Crossing the line? Do women need to be "cautioned" against eating disorders? Does caution work? Gosh - let's make placards! We CHOOSE to have poor body image? So, women choose eating disorders out of some mistaken risk evaluation?

That, I'm afraid, is the conjecture that "crosses the line" from condescending to the truly dangerous.

Directly from the mom

Having seen other versions of this story and been offended by both the term "tough love"** and the question "did it work,"*** I wasn't planning on blogging about this family's story. It has, however, come up on lots of other blogs and ATDT forum.

This one, however, is written by the mother and tells a very different story.

Emily, her anorexia and me

What strikes me most reading this, is that this family wasn't told key things about the illness until their dear daughter was many years into it. They weren't told that malnourishment and weight loss drive psychological symptoms. They weren't coached in how to separate the illness from the person. They weren't given hope, or tools, or useful information.

I don't understand, still, why people insist eating disorders are so different in older patients than young ones - except that we've failed them for longer. I don't understand why we think older patients have to "want" recovery when we know the longer one is ill the harder that is. Good information, family support, and tools are what ALL families need.

*I consider it love, period, for parents to say I support you but not your eating disorder.
**Parents who make such boundaries have to make them not because it will "work" but because the alternative is to support the eating disorder. Whether those boundaries lead to successful treatment or not is a separate issue - parents should not be helping ED.

April 15, 2010

"it's all 'important' work"

Aimee Liu has shared some interesting and, I believe, all too common thoughts on deserving attention: Wrestling with Stigma

April 14, 2010

Irreplacable, un-erasable me...

"How often do you Google yourself?"

Aside from the giggles that sentence can cause, there are some interesting issues here. The use of Google and Facebook and LinkedIn and other online tools to learn about people is a fact of life now. If you have never googled yourself, or your parents, or your kids, I'd love to know why. (And what you find when you do.)

I was recently SHOCKED that my own mother had googled herself! But perhaps I shouldn't have been.

So, in this new world of un-erasable me, is it any wonder that Google and Facebook raise new issues for therapists and their clients. Fascinating topic!

April 13, 2010

Eating disorder cutoffs miss some of sickest patients, study finds

The news wires and blogs are hot with this one:

Eating disorder cutoffs miss some of sickest patients, study finds

My favorite quote:
"diagnostic criteria were developed by expert consensus, without the benefit of studies to track patients' health"

In other words, not based on data or research or science. And it MATTERS.

I am against the use of arbitrary weight targets to measure a mental illness. I think eating disorders need to be diagnosed by the thoughts and compulsions, not by their physical damage or severity. The whole ED-NOS concept needs to be scrapped. It causes support to be withdrawn just when treatment is beginning to be successful, allows insurance companies to withdraw funding, treats patients as if they don't deserve care and help unless they are in medical crisis, and misses the point that the anguish and difficulty isn't about the weight and behaviors: it is mental.

The diagnosis may change when you gain weight, or stop missing periods, or purge more or less but it isn't a different illness. It is still the same illness and needs to have the same name and treatment plan.

April 12, 2010

Do brain surgery unsupervised!

Thank you, Charlotte: sometimes someone just puts it *perfectly*:


"Asking a totally inexperienced parent to notice and stop an ED is a bit like asking a first year medical student to do brain surgery unsupervised."

But coached, supported, and bolstered: parents can!

The Pros and Cons of Mother Guilt

I'm all about "lose the guilt" to parents of eating disorder patients because that is one of the greatest obstacles for families trying to secure and support good treatment. Guilt is counterproductive, misguided, and even self-centered.

But my constant mantra about letting go of guilt has to be tempered, as well.

Parents don't cause eating disorders, but that doesn't make us perfect nor does it mean I think anything goes. In fact, instead of guilt I think we need to be all about taking responsibility for what we can and should do.

There is a value in examining our guilty feelings:
The Pros and Cons of Mother Guilt

April 10, 2010

Directly Observed Therapy

Parents put a high value on building trust. We're proud of the words "I'll do it myself."

Trust, however, is no favor to someone who is too young or too ill or being controlled by stronger powers. This is often the case with mental illness and very much so with eating disorders: we're talking about an illness with a "cloaking mechanism" where the patient often can not see how ill they are or understand the necessity of treatment. We're talking about a brain condition where the treatment seems far worse than the illness at the time, and the compulsion to avoid treatment is so strong it can drive otherwise honest and deeply moral people to do things that appear deceptive and self-defeating.

It is our job as parents and loved ones to see when the illness is in control and driving the patient to these extremes. By leaving no opportunity to "cheat" or "lie" we are actually offering safety, not coercion.

Dr. O'Toole at Kartini describes the rationale and methodology of monitoring medicine intake, but I think it applies to meals as well:

Medication for treatment of eating disorders and Directly Observed Therapy

Hospitals do this, and we should not be afraid to offer this safety as well.

My favorite quote: "I swear, DOT could have been invented by my grandmother (or yours); it makes such intuitive sense."

April 6, 2010

Getting our children back

I'll probably never be comfortable with seeing myself on film, but share this with you anyway. June Alexander is, in my opinion, changing the narrative of eating disorder treatment. She is bringing excellent journalism, brave families and patients, cutting edge and effective clinicians, and a fine story-telling talent to a field that is struggling for all of the above!

Interview with Susan Ringwood from June Alexander on Vimeo.



LAURA COLLINS from June Alexander on Vimeo.

April 4, 2010

Another word bites the dust

I've used the word 'recovery' all my life, yet this past month I've been brooding over how it is sometimes used in a way that I do not intend it and in fact abhor.

Words matter. People take the words 'recovery' 'in recovery' 'recovered' 'over' 'cured' 'survivor'*and 'remission' very seriously. Which word you use says something about what you think the illness is and how it should be dealt with.

Some who use the word 'recovered,' or 'recover-ed' like my friend Jenni Schaefer, mean the illness is dead, buried, and beaten. The illness isn't coming back because it has been extinguished at all levels. The word is used as an acknowledgement of the work of going from ill to well. Discussion of relapse risk can be seen as an affront to that triumph: if the symptoms could come back then the person hasn't really beaten it. In this way recovered means the person is even less likely to have these symptoms than a person who has never had an eating disorder. I respect that point of view, though I don't share it because I think the predisposition is based in the brain and can be switched back on under certain circumstances. I believe all former eating disorder patients need to live without tempting ED with diets or unrelieved stress or excessive exercise. I believe former patients should have an early warning system in place for life: doctors and loved ones who know what to look for and will intervene early. Access to expert care should be available at the first sign of trouble. In my opinion the work, and the triumph, of gaining full wellness after an eating disorder is in no way diminished by the fact that relapse could occur.

I've used the word recovery to mean the process of getting entirely well and the state of being well. Not managing the illness, not settling for less. I've used it carelessly, I think, and assumed everyone took the same meaning from it. When I've used "full recovery" and "recovered patient" I meant fully well and not just weight restored or eating normally. I meant the description we posted on the F.E.A.S.T. site.

But I did not take into account another use of the word recovery: the one we see in the "recovery model" for chronic mental illness. I heard a great deal about this model and this use of the word when I was in London last month and it raised my blood pressure. This use of the word means re-framing the goals for the treatment process. The recovery model asks the patient what they want, what the illness means to them, and sets goals based on those goals and values. Since this idea comes out of the addictions and schizophrenia world I understand the shift away from pathologizing and insisting on "cure" in that context but absolutely reject it with eating disorders.

If I were Queen I would make people use the term remission with eating disorders. Remission implies treatment has successfully taken the illness and the symptoms out of the picture while still acknowledging a higher risk of the illness coming back. It honors the work of treatment without hiding from the fact that there is a need for vigilance. I've tried to sell this idea to parents with little success: in fact I've caused hurt and annoyance. The word and idea of remission struck them as defeatist and pessimistic.

Eating disorders do not need to be seen as a chronic illness with which one simply lives or manages the symptoms. Eating disorders are treatable to full .... health? wellness? normality?... I no longer have a word to use and I resent it. I dread going through everything I've written to switch to another word especially when I don't have a satisfying alternative.

But if 'recovery' is taken to mean 'improved quality of life without the goal of a life free of the eating disorder symptoms and thoughts' then I don't want to be associated with it. I reject it.

I reject is as I do the idea of palliative care for longtime uncompliant patients and I reject the notion that an eating disorder is a lifelong condition.

There will be patients who do not end up healthy. This is a very difficult illness and we do a very poor job of treating it. Most patients also have co-morbid issues that remain untreated and too many are left marinating in their illness and suffer chronic brain damage. The goal of eating disorder treatment, however, needs to be agreed upon. Hope and assertive care can not be withdrawn. Living "with" the illness is unacceptable if there is anything we can do - and there is, as long as the patient is alive.

I may have to give up the word recovery. I will not, however, be giving up the idea. I just need a new word for it.

*added. Thank you, M.B.!

April 3, 2010

Parent stories

My friend, June Alexander, is writing another book and seeking a parent who can describe their experience with traditional therapy, direct or indirect messages they received about their role in “causing” the ED, and what other treatment options they tried before finding the Maudsley approach. June is a professional journalist with a special interest in eating disorders and a history of sensitivity with interviewees.

For more details, write to June: june@junealexander.com. For more details about June go to http://www.junealexander.com/