March 31, 2010
An audio blog post about "chronic" anorexia and palliative care
March 28, 2010
There is another reason, though.
I am not convinced of the effectiveness of residential eating disorder care and in fact have a lot of concerns about negative effects. Residential care means: separation from family and support system, absence from society, enormous expense, limited duration, exposure to patients whose symptoms or histories may contribute to the trauma of treatment, learning new behaviors or subterfuges from fellow patients, exposure to ideas and belief systems about the illness that may not be aligned with family or local resources, and a dependence on institutional environments.
All the above would be justified if it worked, but I have yet to see evidence whatsoever that the results of residential care are better than outpatient care (outside of marketing materials). In fact, there are indications of the opposite. Yes, patients who end up in residential care are a more chronic and ill population by definition, but even still the evidence for outpatient care is pretty clear. Also cost-effective, but that should not be a consideration. Effective, early, outpatient care is, to my mind, the way to make residential care what it ideally should be: available, safe, and rare.
The aspect of residential treatment that concerns me most, truly, is the disconnect between clinic and home. While the tools and boundaries and values of the clinic may be ideal and ideally delivered: without a clear transition to home and the continuation of those boundaries patients often, in fact even in the industry it is considered normal, return to residential care. Residential care can not go on long enough to bring full remission but when the home environment is not offering the same care and similar accountability all the work of patient and team to that point is at risk. The default in these cases is to blame the home environment, but I see it as almost built into the system: we set patients up to fail at home.
I believe the primary job of treatment is providing an environment for recovery for the entire duration of care. I believe a plan that doesn't cover the entire arc of recovery is worse and crueler than not starting.
Parents make the decision to pursue residential care in the belief of a cure, not a respite. They believe their loved one will come home with "tools" that they will feel ownership of and be in charge of on re-entry to real life. Parents rarely choose to support residential care at a calm time or feeling they have a choice: it is an enormous decision and a great deal of hope is invested in the decision. There is a particular and far too common despair of families who see a loved one come home and slide: when they've been told to back off or not part of the continuing plan.
Should parents have these unreasonable expectations? No. But who is going to dampen those hopes? Who is in charge of lowering expectations? Who is going to tell the parents that they need more than phone family sessions and Family Week? Intake staff? The patient?
Here's what I wish for: a treatment ethic for eating disorders that considers the home a treatment environment. That all possible resources are put into making the home a safe and integral part of the recovery process from the day of diagnosis. That residential care, when needed, become an extension of home as well, where parents and siblings are welcome at all hours and trained as part of the recovery team. That parents no longer have a choice about sending a loved one away: they are a daily part of the treatment as a condition of residence. That nearly as many hours are spent training and coaching the family as are spent on the patient.
It is time to stop seeing treating patients at home as in charge of their recovery and treating in a residential environment as excluding the family. We need to move forward to integrating these concepts to offer a full circle of safety and urgency in all environments.
March 26, 2010
I'm not so pleased that BDD is gaining better understanding at the price of eating disorders: "unlike eating disorders, which mainly affect women seeking supermodel thinness."
One, the proportion of male ED patients is roughly 1/5, not some meaningless minority. It should go without saying that the sex ratio is a matter of incidence but not of the severity for the individual patient. Male eating disorder patients don't suffer less, there are simply fewer sufferers. This is true for MS and other illnesses as well, but we would not think to bring that up except as statistical information. We do it with eating disorders because we mistakenly think it "means" something at a societal level. It is time to stop repeating that endlessly and making male patients and their families feel marginalized.
Two, eating disorder patients are not "seeking supermodel thinness." That is absurd and offensive. Eating disorders occur at and persist into all weight ranges and the patient's perception of body size bears little relation to actual size and the distress is not lessened at "supermodel thinnness." Patients are not "seeking" anything; they are compulsively driven to avoid food and weight gain and report a range of "reasons" for doing so. It is a mental illness not a vanity play.
The saddest thing about the article throwing in that line is that the whole article could usefully have been written ABOUT eating disorders. The mistaken ideas about the illness, the treatment, and the anguish could be written of eating disorders. I happen to think of eating disorders as BDD with compensatory behaviors that maintain the illness, myself, in most cases.
Unhelpfully, the expert in BDDs cited in the article muddies the water in her blog post by describing anorexia as different from BDDs based on the tautology that it isn't because it isn't. If we looked at EDs as a form of BDD, or at BDD as a co-morbid or maintaining factor of an eating disorder, we'd be making progress. By defining an eating disorder as not BDD by describing the additional symptoms of an ED I think we serve neither population well.
One last mini-rant. The body dysmorphia of an eating disorder is often allievated or cured by weight and nutrition restoration. This is such an important fact that it amazes me that it is so rarely discussed. Eating treats the dysmorphia in most eating disorder patients. Patients often feel more normal in body size as they gain weight toward normalization. All the therapy we throw at the body image distress of an eating disorder, but we rarely talk about the functional role of malnourishment in those symptoms.**
**Well, some people do. See Guisinger.
March 24, 2010
A Luncheon for Families and Friends Supporting Loved Ones with Eating Disorders
Friday April 30th at Noon
Hosted by Beth Mayer, LICSW &
Mary Beth Krohel, Member of: Families Empowered And Supporting Treatment of Eating Disorders (F.E.A.S.T.), NEDA’s Parent, Family & Friends Network, & AED’s Medical Care Standard’s Task Force
Interested in meeting other families and friends of loved ones who struggle with an eating disorder?
Attend MEDA’s 15th National Conference (April 30th-May 1st)
and see workshops such as:
Taking Control of and Getting Help with Your Health Care Decisions – What You Need to Know About Health Care Proxies, HIPAA Releases and Guardianships -Leanna Hamill, Attorney at Law
Must We All Clean Our Plate? Food Rules and Disordered Eating Amongst Minority Women—Melissa A. McLain, Ph.D.
Beyond Green Eggs and Ham...Recent Clinical Advances for Nutrition Counseling - Amy Aubertin, MS, RD, LDN; Heather Bell, MPH, RD, LDN; Lisa Pearl, MS, RD, LDN, GCEC; and Maria Walazek, RD, LDN
and many more!
DETAILS: Dates: April 30-May 1, 2010
Place: Sheraton Hotel, Needham, MA
Keynote: David Treadway, Ph.D.
Endnote: Kitty Westin, LPC
Luncheon is included in cost of Friday’s registration.
For more information contact Kristin Tyman at 617-558-1881 ex.12 or firstname.lastname@example.org
Register online at www.medainc.org/events/conference.asp
March 23, 2010
I'm doing a live online TV show tomorrow on HealthyPlace TV: Eating Disorders Recovery: Information for Parents join us and call in with questions!
Lobby Day is a non-partisan event where all those with an interest in eating disorders get their say with their own representatives. We visit 4-5 offices, by appointment, and as a team. Each person has a chance to speak, but noone stands alone. Over the two days of the event everyone gets a chance to meet others from around the country, learn about the legislative system, and walk the historic halls of Congress to be part of that system's responsiveness to individual citizens. At the end of the second day all are invited to a Congressional Briefing attended by Congressional staff and featuring speakers that never fail to inspire and move the audience to a better understanding of eating disorders.
I'd very much like to see more parents attend this event. I've done Lobby Day with my daughter, and I always enjoy seeing family members come together to share this experience. I have a gold fork for you if you attend!
Eating Disorders Coaltion First Lobby Day of 2010
We need you!
March 20, 2010
I took a picture of dawn over the wing.
Then I took a picture of BMI Airlines, just because it cracked me up. You can’t see the letters, but it seemed like a perfect greeting card for a punchy ED activist.
Sleepwalked through immigration and got my luggage and my first chance to be called “love” of the morning before I descended to the Tube stop and my first on-the-ground view of London. Although I was a travel agent for seven years and circled the globe and travelled a great deal for some reason I’d only changed planes in London and never stopped. I enjoyed the commuters, and then coming out of the station and to my hotel just in time to see parents walking /biking/ scootering their kids to school.
The hotel didn’t have any rooms yet, so I turned in my bags and walked the neighborhood of Kensington. Checked out the venue for the conference, got a snack, walked in a grocery, window shopped, eavesdropped, tried to get into a library, and of course blogged.
This was my first trip in years without my laptop, and I’m glad I left it behind. With my Blackberry to let me know what I was missing (too cumbersome to actually read all five email accounts or check the ATDT forum) I was able to cope. For the whole week there were only three really urgent messages and my thumbs were able to handle them.
After a nap and organizing myself I went downstairs to meet my friend, Chris Berka, who is also our Board Chair – he had just arrived. We caught a cab and went…
To the Maudsley Hospital. Anyone who knows me or the course of my life these past seven years will get why that was both important and poetic. I’ve said the word “Maudsley” at least once a day for years – usually quite a few times. I’ve consciously and doggedly tried to make “Maudsley” a searchable term on the Internet to bring parents to evidence-based information about eating disorders (“family based therapy” is not a google-friendly term). I’ve had the word used against me, I’ve been used against the word, but I’ve never been TO the Maudsley. Now, I know the hospital doesn’t offer what I and others call “the Maudsley Approach” and in fact the clinicians there chafe at the way I and others use that word. We knew our friends who work there wouldn’t be there to greet us and that there was no actual office at the hospital to lay a wreath on, and I know that my friend Fiona has a different reaction to that word than I do. But really, what did you expect me to do when I get to London? Doesn’t everyone visit a psych hospital when travelling?
I was delighted that my friends Chris and Fiona and Rachel wanted to make this pilgrimage with me, as psychiatric tourism is a rather odd way to spend an afternoon, but I’m grateful. We were admitted to the building and had advance permission to get something to eat at the cafeteria. I took pictures and even a video. The English had tea and the Americans coffee but that was the end of any international disagreement.
The four of us had the most wonderful and relaxed conversation. It was, one of us said later, “an inspired idea” and “time kind of suspended itself for a bit, just for us.”
Of course, the fact that I was meeting my good friend, Fiona, after all these years was both surreal and completely natural to do so there of all places. Meeting Rachel in person topped the experience beyond my hopes.
In case you wonder what it looked like inside and out, I took a video clip! (see below)
We’d hatched a plan to walk from the Maudsley back to the hotel so I could see a bit of London on foot but we were having too good a time and ended up getting the hospital to call us a cab. And no, it was not the vehicle behind me in the picture!
At the hotel we found F.E.A.S.T. friends waiting for us: EB, Erika, Lynne, June Alexander, Pat, and Brian. We sat down to a very jolly supper, joined at the end by Susan Ringwood who looked remarkably calm for the host of 525 people in the morning! As tired as I was, that was a wonderful meal. As usual, I have a picture of the table.
Why does Laura take muddy pictures of tables and no people? Because I don’t like to put people on the spot about having their pictures on my blog. Privacy is an important issue in the eating disorder world, and I like to honor that. Plus, what could be more appropriate than a table surrounded by diners and friendly talk?
Oh, and in answer to those who were not there but were curious for some reason, I drink Guinness. For the iron, of course.
Speaking of nutrients, EB brought AMAZING F.E.A.S.T. cookies! With “FEAST-ED.org” and “Magic Plate” on them. I hoarded some to bring home for my family and kept a few to keep forever.
June caught me enjoying my shortbread! Blame the Guinness and jetlag for the glazed eyes.
I did not like saying goodbye to everyone that night, having only just got to meet them. Some had come only for the dinner and not the conference, and I am so SO grateful for the opportunity to have that time with them. Thank you EB, and Erika, and Lynne, for being there and for talking of many things and not just eating disorders: among them graphic design, graduate school, and cookie cutters!
I slept SO WELL that night.
The professional conference was held all day Thursday and Friday, with a National Family Network Day on Saturday. Dinners were on our own: a fun opportunity to spend time with other attendees, or “delegates.” I was pleased to enjoy curry, sushi, and fish and chips along the way. I drank a pint, well – the better part of two half pints – at a Pub. I got into philosophical conversations with people I agreed with and some I did not. I got a pocketbook full of business cards and literature and will be working through them for weeks. It was a wonderful networking opportunity.
I met a range of fascinating professionals. A forward-thinking Norwegian and a skeptical Greek. Two people from a residential treatment center with whom I shared much in common and two from another one with whom it was a struggle to find common ground or vocabulary. I became enraged by talk of one approach to care, and encouraged by talk of another. I met a few legends – that was intimidating. (I also met a Sir, and surprisingly that was not.)
I also met some wonderful parents. Charlotte was there to greet me on Saturday morning and that was a thrill – she was a valued member of the F.E.A.S.T. team throughout the day. I met a parent from the forum who I didn’t know would be there and a friend of hers that I hope will be joining us. I met a new F.E.A.S.T. member couple who deserved some encouragement in the middle of a very tough time – and got it by the bucketful from the other parents at the table. Plus many others. Fiona and Chris and I split up to cover more ground, see more presentations, meet more people.
High points: Eisler and Simic’s 2-part seminar called “Families Around the Table.” Cindy B’s catwalk lesson (see below). Professor Glenn Waller’s unsuccessful attempt to be disagreeable. Some very brave parents and a young clinician who spoke up at Question Time. Translational research. My friend, Gary. The students presenting their first papers. The nurse who had to stop us from telling him any more about the psychological power of weight restoration because he was worried he’d have to quit his job as a heretic.
It would not be a complete account if I did not make some observations of a less cheery nature.
It concerns me that the standard for hospitalization in the NHS is a BMI of 14.
It distressed me that a presentation demonizing parents – complete with pornographic illustration – went unremarked.
It appalls me to hear talk of palliative care in patients with a treatable illness – some with parents sitting by helplessly wanting to intervene. These patients, I have to say, are honored in the delusions of their brain state but not in their humanity. It is inhumane to let a mental illness dictate care because we lack the will to act “too aggressively.” This squeamishness about “forcing” people to accept care is palliative for the eating disorder and perhaps for some clinicians, but I doubt any parent not already repeatedly cast away in the process would agree that “listening to the patient” is preferable to something temporarily forceful. The recovered people who were once given up on would not agree. My perspective as a parent surely biases my view but exactly whose bias, really, should we listen to? ED?
My impression of the UK’s eating disorder treatment environment is that it is different than ours in the US on a few dimensions. I see a greater interest in evidence-based practice in the UK, for example, despite limited access to care. I heard very little about the kinds of non-evidence based treatments and tools that are so common in the US. I heard less about cause at this conference – and far less about blame, and that makes sense. I noticed that participants had their geographic location but not their affiliation on their nametags and in their own introductions. It was harder to start a conversation with a stranger, but a bit more substantive when we did.
I won’t get into the particulars of how I think having a national health system changes the way families seek and respond to care – for fear of starting a political discussion. Yet I do have to note that it does change things a great deal and not always in obvious ways.
I had a delightful moment right before I left for the airport on Sunday. I got to meet my 12-year old son’s dear cyber-friend in person. Even though I had seen her on Skype and my son and this young lady have been friends for years online it was still very exciting to meet her in person and her delightful mum. The fact is, this trip was all about how the Internet has made it possible to make friends and connections with real people around the world. I won’t share THAT photo, but I will tell you that I was smiling.
I still am.
Thank you to all the F.E.A.S.T. parents who made this trip happen, to Susan Ringwood for encouraging us to submit an abstract, for the families who came together in person, to my husband for holding down the homework fort, for the Mod Squad on the ATDT forum who kept things from getting out of hand despite a wave of new visitors, for the cool t-shirt vendor at the airport, the “loves” and the “dears.”
March 19, 2010
Dear Friends of NEDA,
Michelle Obama has announced that combating childhood obesity will be one of her primary missions as First Lady. As such, she has established a task force comprised of representatives from numerous government agencies. This task force has 90 days to make recommendations on the following goals:
(a) ensuring access to healthy, affordable food;
(b) increasing physical activity in schools and communities;
(c) providing healthier food in schools; and
(d) empowering parents with information and tools to make good choices for themselves and their families
The task force is seeking feedback from the community to assist them in this significant endeavor. This is our chance to ensure that eating disorders are heard! They are accepting public comments.
NEDA urges you to write to the task force today to educate them about the dangers of misinformed obesity prevention, to encourage programs that promote healthy behaviors and body satisfaction, and which incorporate the emotional aspects of eating and body image.
Click here for facts about the need for eating disorder informed obesity interventions. Click here for the Academy for Eating Disorders Guidelines for Childhood Obesity Prevention Programs. Click here for an article written by expert, Kathy Kater, on the dangers of misinformed "obesity prevention." These resources may be helpful to augment your comments.
To submit your comments to the task force, and for more information about the obestiy initiative, please visit http://www.regulations.gov/search/Regs/home.html#documentDetail?R=0900006480abe53d
Please contact email@example.com and let us know you submitted a comment!
March 17, 2010
I'll still post here on this blog, but probably not as often. When I do post over there I will create a link here, so you won't miss anything. I hope you'll subscribe to the HP blog and keep on offering your comments and suggestions.
My first post is, predictably, about blogging:
Why Blogging Improves My Mental Health
March 16, 2010
March 14, 2010
March 13, 2010
Goodbye to my first pint at a real pub, to every accent but my own, to gawdawful early rising and ridiculously late bedtimes, to sushi and scones, the Albert Hall, competent cabbies, to queuing, looking both ways and still being confused, to being a 'love' and talking about leptin, to passing notes at lectures, to the universal language of rolling one's eyes, to applauding for fiesty moms, the Shakespeare restaurant, and all the people I admire from several time zones who I hugged today.
To Fiona and Charlotte and Chris and June and Susan and Gary, especially - and that's just tonight.
I'm dedicating my farewells tonight to the mum and dad across from me at lunch bowed by the same exhausting wind but despite it all and the unfairness refuse to fall down. Sitting there together you struck me as the bravest of the brave, though I know every day is so hard. That is perhaps when true courage is shown-and at that table every one of us saw that in you and understood. I have a feeling that today may mark a new phase.
Sent from my Verizon Wireless BlackBerry
March 12, 2010
High points of the day: Eisler and Simic, meeting a sir, surviving the day in new heels, and finding an ally in an adversary.
Lamb leeza for me, thank you, Gary.
Cary Grant, Olympics, the DSM, porn and daal - Big Daddy munks -/Glen catching tigers.
March 11, 2010
I'll report soon but tease you now: tea at The Maudsley, meeting longtime friends for the first time, lovely people, a few ostrich people (Treasure reference), Magic Plate cookies, being awakened by Beyonce, gathering barrels of brochures and business cards for follow up, the use of the word "anorexia," and the offensiveness of the word "palliative."
Your sleepless London correpondent,
Sent from my Verizon Wireless BlackBerry
March 10, 2010
Took tube to Kensington and waiting now for early check in at hotel.
I forget how much I love flying and adore cities, and public transportation, and being able (with the benefit of a passport and sufficient cash) to go to another country at will. Yesterday I was in a small town in rural Virginia, today I'm eavesdropping on Malaysians and I've been called "Love" twice before breakfast.
Time to read a bit and take it all in before I get to get in a nap before the events of the day!
Sent from my Verizon Wireless BlackBerry
March 9, 2010
And guess where I'm going tomorrow?**
The Maudsley Hospital. Yep. Imagine that.
I'll try to blog while away, through my phone. No, I'm not taking my computer, and that's an experiment in itself!
On my return: thoughts about the contrasting linguistics, orientation, science, health systems, and cuisines.
Also, news on my new blogging venture and an upcoming TV spot. Stay tuned!
**Tomorrow being a relative term when I'm passing over so many time zones.
March 8, 2010
March 5, 2010
The world is becoming a far better and safer and more effective place for families facing this illness. Thank you, Marguerite Kelly, for helping families get good information!
Family Almanac: Treating daughter's eating disorder must involve entire family
March 2, 2010
We get it when we hear: Mixed-handed children more likely to have mental health, language and scholastic problems, though it may be surprising. We don't try to cure mixed-handedness so kids will be mentally healthy. Redheads need stronger anesthesia but we don't dye people's hair to reduce pain. Higher bipolar risk for straight-A students shouldn't lead us to tell kids to stop studying** because we can easily understand that some of the same traits that cause great highs and lows can bring about higher grades (though it would probably explain more low grades). Did you know that being taller puts you at risk of some cancers? Off with their heads!
But we don't get it when we hear that eating disorder patients report families with higher incomes, parents who diet, and moms and dads with anxiety problems. This is licence to ascribe EDs to an overemphasis on achievement, parental vanity, and stressed out families - and say that the solution is for parents to chill, get over themselves, and be humble.
We understand "risk factors" doesn't mean "cause" when it suits us.
The difference? We WANT to ascribe cause to eating disorders. We WANT to blame someone and we WANT to see in eating disorders an object lesson in greater issues. We want villains, and we want heroes. We don't like smug, driven, self-conscious parents and instead of seeing them as trapped in some of the same patterns as their kids we think they have a choice and we don't like it.