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Sunday, 25 November 2012

Calling out the idiots- smug ignorance from so-called professionals

Below is a list of quotes from clinicians.  Some have been named.  Some have not.

In terms of how you can support as Parents, the challenge is that we ask Parents to back off completely in terms of ‘getting her back to eating normally’. As this is an illness where a strong function is around control, it is important that the sufferer does not feel controlled or coerced into eating by well meaning friends or family. We do run a support group which would be of great benefit in terms of being able to talk to other Parents who have been in your situation & come out the other end. It is on alternate Tuesdays here from 7-8pm and the next one is running next week. It is normal to feel anxious & normal to want to do anything you can to get Sophia to have a healthy relationship with food but our experience is that the sufferer has to address this herself in therapy. We encourage families to avoid food related conversations & to encourage relaxation & fun given the fact that those who experience eating disorders are academically driven with perfectionist tendencies who also believe that they are undeserving of any form of pleasure or enjoyment. I hope this has been of some use, there are further resources available via The Maudsley/Institute of psychiatry Website that other Parents have reported to be helpful and they are also highly evidenced. Or if you Google Janet Treasure or Ulrike Schmitt you will find a wealth of information
(A well-know West Country ED service, UK)

From our Canadian paediatrician: "she will have anorexia the rest of her life and she needs control over her food" "refeeding is really hard to do, probably too hard" sigh-just remembering this makes me so sad-we were in early stages and feeling so vulnerable and had read about maudsley, fbt and recovery being possible Now I am just spitting mad

from NEDIC website: National Eating Disorders Information Centre (Canada's national ED website sponsored through University Health Network)
From Overview: "There are many different kinds of food and weight preoccupations, including eating disorders. This section aims at de-mystifying issues relating to dieting, food, weight concerns, shape concerns, self-esteem and body image. To do so, we will be looking at those influences that most contribute to how we feel about our selves and our bodies, and that ultimately can help us make healthier choices for more enjoyable lives."

From Know the Facts: "The first step in any recovery process is in first realizing that our food- and weight-related behaviours are hurting us, rather than helping us. Once that realization has been made, there are a variety of ways in which help can be found or offered to those suffering from an eating disorder. Family members and friends may also benefit from information and help."

from my GPs notes re: FBT "seems to be dealing with anorexia as an illness and not result of family issues necessarily ( sounds like treatment like EtOh abuse- separate from person)"

From a PhD, ivy league-educated psychologist to me: "What do you think is in it for YOU with your daughter having anorexia nervosa?", insinuating that my daughter's illness had some benefit for me, that I was causing and perpetuating my daughter's illness.

"Little girls get skinny". By my daughter's pediatrician

"Why did you wait so long?" (Asked by a psychiatrist -- it was completely the wrong thing to say to parents who had been desperately searching for help for 6 weeks, and whose daughter had only shown signs of illness for a few months. It sounds relatively innocuous, but this is one that still smarts for me, 2.5 years later.)

"You need to stop reading so much. It's making you anxious."

"It's about control. Give her some more independence, and she'll come around."

To my daughter, from professionals:

"Don't worry, it's mostly water." (a psychiatrist who told my daughter her weight and witnessed her falling apart -- we had trouble getting her to drink any water for a few weeks after that)

"Normal weight is 100 pounds for 5 feet and 5 pounds for every inch over that." (a nurse at the hospital -- she is still fixated on that as a normal weight)

"I don't like water either. That's why I drink vitamin water." (a highly recommended therapist we were trying out while my daughter was already avoiding water -- we didn't go back)

"If you Parents divorced, your D's anorexia would most likely get better" giving the message that parents were causing this illness rather than she set her weight too low.

"Oh, (my D's name), you are just having a temper tantrum to get your parents' attention" when she was really suffering from ED rages and PTSD symptoms from traumas. The insinuation, of course, was that she didn't have our attention and support she needed.

"Your D is stable in weight and she needs to come back to college so she can learn how to adjust fall semester and be like other college students" My D was 25 pounds under her accurate target weight range.

The last psychologist (before we found FEAST and an FBT) who was trying to have my D "own her recovery" and have no parental input in meal planning and my D quickly became so ill with rapid weight loss and suicidal thoughts. My D's ED was raging and the psychologist looked at me and asked "Do you know why your D is so angry at you?"

These from a HIGHLY recommended T we found on the Maudsley Parent's website (I just checked, while zie is still in practice, zie no longer lists there):

- Maudsley only works with "younger" kids - d was 16.
- Don't be the food police
- This is a power struggle
- Relegated me (step parent) to "chauffeur and cheerleader"; I was NOT EVER to be involved with D at meal
- Told me to stop reading and stop coming to this forum b/c THAT was what was making me anxious (not our D's deteriorating physical state, oh heavens no)
- Tried to "renegotiate" what "kind of parents" dh and I were going to be to our d.

Cherry on the icing on top of this s#@t-cake? Zie dropped us from her practice when D started self-harming. Zie dropped D b/c D was "too unstable to be cared for on an outpatient basis" and then had to be practically arm-wrestled into writing a recommendation for D to be in residential services.

"We don't like to share weights with our parents because they get obsessed with the numbers."
You try feeding an irrational angry person six times a day, lady, and see if you get interested in those numbers!

"We decide if the parents can handle that information."
...because we secretly think we are sooo much smarter than parents.

"We like to bring the weight up slowly (gesture of hands rising together) so the psychological side and the physical side rise at the same rate."
Doesn't work like that though, and the family is burning out.

"We like these kids to gain weight slowly so that it goes on as muscle instead of fat."
These kids are different than normal human beings who have starved somehow.

"We like to set the target weight low because these kids are terrified of gaining weight."

"Above all, preserve the relationship."
I think that was the most damaging quote ever. It implied that I must be doing something wrong because my refeeding her was driving a giant wedge between us. How was I supposed to preserve the relationship? By not feeding her?

"She says she doesn't need any help, so we'll discharge her." to the father of a 16 year old who takes blades to herself regularly, can barely manage 80% school, has no social life, wears the same outfit and hairstyle every. single. day, ditches lunch whenever she gets low.....
Last week, highest-tier CAMHS psychologist & psychiatrist.

The nurse who was trying to get blood out of my D's bony little arm to check her WBC and potassium levels, then weighed her - 7 1/2 stone at 5'7 and told her she' was nice and tall and would make a lovely model. I still don't know how I didn't physically shake her and tell her what a moron she was.

Said by a psychologist who specializes in ED, while D was inpatient and he was in charrge of her care, during a period of 2 weeks when she was mostly not eating and losing weight rapidly, and she was being assigned to eat her meals alone ina room without even a staffperson to sit with her, and we were not allowed to provide meal support - "Yes, she understands that eating is optional here, but we are continuing to work with her using behavioral protocols and incentives."

"She needs more salt."

She'd been fainting, stopped growing, lost weight, and they could barely find a vein to do a blood draw

To be added to, for sure.  Please feel free to send me your additions.  We might even need a new blog for this one.

Thursday, 22 November 2012

Is anorexia a choice?

A conversation on the F.E.A.S.T. Facebook page following this post.

I dont know if any of you caught the BBC new this morning but I heard the tail end of a plan to have body image lessons at school- this led me to look it up on the BBC website to see what it was all about- there are a couple of articles on it, and I found this one, if you scroll down the article it says about wiping out eating disorders.... I read a lot of view on here regarding body image and ED's and wondered what people thought of the Governments comments in this report?

Yet again, nobody says it better than Betsy:

  • Betsy Baldo In my experience during school, body image stuff as well as talking about nutrition and whatnot actually led to girls talking about and idolizing eating disorders. Girls would complain after health class about how fat they were and not eat lunch that day and swear they were going on a diet and promised they would never eat chocolate again, they would say things like "Oh my god those girls those girls with anorexia are so lucky, I want to be like that, but it's just so hard because I love eating so much..." and on and on. I would just sit there thinking about how totally useless, counterproductive and ridiculous this curriculum was. It just brings body image issues to the forefront of everyone's mind and spreads ED myths like wildfire. THANK GOD I AM DONE WITH HIGH SCHOOL.
    21 hours ago · Unlike · 6
  • Charlotte Bevan Betsy Baldo I am going to have a book of your sayings and posts. Just saying....
    21 hours ago · Like · 4
  • Betsy Baldo 'If my brain was normal, I would find a better way to express my teenage angst than starving myself to death.' A common-sense approach to dealing with Eating Disorders with a healthy dose of jaded sarcasm. By Charlotte Bevan, from the mind of Betsy Baldo.
    20 hours ago · Edited · Unlike · 6
  • (LE) wait, you mean i could have just dyed my hair pink and rebelled against curfew rather than nearly starved myself to death and become institutionalized?? IF ONLY SOMEONE HAD TOLD ME! ;)
    13 hours ago · Unlike · 4
  • Betsy Baldo Exactly LE!!! We also could have rocked some tattoos, a tongue ring, gotten pregnant by a no-good 22 year old boyfriend, gone goth, stolen a car, become obsessed with skateboarding and gotten all F's in school, and/or smoked lots and lots and lots of weed. But no...we just had to pick a life threatening disease!!!

Tuesday, 20 November 2012

Running in the family

Dear Mum and Dad,

I feel that Thursday was the important, first step that is needed towards helping E get better with her eating. I hope that you will both be able to attend next week’s feedback meeting to discuss where to go from here and to gain an understanding of what the specialist team believe is her diagnosis and hear what the suggested treatment options are. I feel it is important that you are both there to learn the right solutions to help E overcome her problems and ultimately to learn what the diagnosis is and what the recovery programme will involve.

I feel it will give you the best possible opportunity to discuss how to help E gain weight, eat “normally” and lead a more “normal”, healthy and active life – at home and at school.

The responsibility of getting E better doesn’t fall just on mum but from my own experience, I think that perhaps what she needs is a big team – which includes all her family, the specialist team at GOSH and her school. I know what was (and still is) helpful and reassuring for me was to have a team of support – which includes my family, friends and the experts.

Knowing E, knowing you and knowing quite a bit about what she is going through, it is important that whatever diagnosis is made is taken seriously and I hope you will feel reassured that the hospital will know what the best route will be, that you would give every possible consideration to the options available, which may include possibly going into hospital. In the short term, this may seem quite harsh but it will – I know – benefit her in the long term, in the same way that it did for me. In my case, being in the Woking Priory might have seemed disruptive, difficult and unsettling but it gave me the tools to lead a normal and happy life. Whatever treatment the experts at Great Ormond Street suggest will give her the tools to eat and help her become fit and healthy. Obviously E’s and my situation are different not least because we are very different ages but what is the same is that she needs the tools that will help her learn to eat more normally – in the same way that I was given tools to be calm, think rationally, and become more self aware.

From my own experience and perspective, I don’t think this can be done at home because I don’t feel that any of us have the essential knowledge and tools at home to be able to help her, and I also believe that this is not something that we can brush under the carpet – because of the implications that this may have on her in the long term and in later life.

I feel that although the team at GOSH don’t know E best – they do know the problem best and know how to make things better. The expert of Ella (you) and the expert of E’s illness (GOSH) both need to come together in order to help her. And I am sure that whatever treatment is suggested, you will have an important role to play.

I do feel that once it is known what is wrong with Ella and causing her these difficulties with eating, it is important that the hospital’s treatment plan is pursued, because it will make her better, which in turn will make things so much easier at home. I think that both you and E will be so much happier and life will be so much easier once all these hurdles are overcome.

I feel we are so lucky to have been given this chance to meet these top experts who are renown for helping children with problems surrounding food and eating.

I hope that you can trust these specialists in eating disorders because even though you know Ella better than anyone, they will have dealt with other children, who have similar problems – which gives hope to the fact that she can get better too. I also think it is important that these problems with her eating are dealt with now rather than waiting for them to get worse – it has already been left late enough.

Whether or not you want my opinion, I want you to know that I think Ella’s situation is very serious and must not be ignored. If I was in E’s shoes, it would be important for me that both my parents were able to learn and understand what I am going through and that they were able to find the best possible help in order for me to get better.

I believe that although when we look at E and see a smiling, chirpy, funny and quite frankly FABULOUS child, I strongly feel that there must be things going on for her under the surface that can’t be seen but are causing her to not eat properly – and perhaps even she can’t explain what these are. But with specialist help through vital re-feeding and other things like art therapy for example, an insight can be gained as to why she has these eating problems and how best to over come it.

I believe we all want the same things – for E to be happy, healthy and strong enough to be able to live without a peg. I have absolute faith that these things are all possible - I hope you understand that I am only writing this letter to you because I love E more than anything else in the world and I want her to be well. And nobody doubts for a second that you want her to be well and happy too.

I also hope you know that nobody is blaming you for any of this. It is not your fault that E has these problems. It’s a biologically based mental illness – E didn’t choose it and you haven’t caused it.

I love you lots


Thursday, 15 November 2012

The Conference

ECHO FEAST and Maudsley Carers Event
Bestwood Lodge Hotel
Bestwood Lodge
Bestwood Lodge Country Park
Nottingham NG5 8NE
United Kingdom

Driving Directions

Friday November 23, 2012 at 8:30 AM CET
Saturday November 24, 2012 at 4:00 PM CET
Add to my calendar
Dear Charlotte, 

Friday Programme 23rd November 2012
8.45 Introduction and housekeeping Charlotte Bevan
"F.E.A.S.T. and what we do" Fiona Bromelow

9 - 10.45 Keynote Speech Professor Janet Treasure

10:45-11:15 Coffee

11.15 Plenary
 "Boys Get Anorexia Too" Jenny Langley
"The ECHO Project" Dr Pamela McDonald
"Professionals, Carers and the Internet" Dr Rachel Polonskyand Dr Maria Finnis

12:30 Q and A Session with the morning's speakers

1- 1.45 Lunch

1.45 Plenary
"First Steps Derby" Danielle Sinclair
"Freed Beeches" Yvonne Broughton
"Beat, the UK's leading Eating Disorders Charity" Susan Ringwood

3:00- 3:30 Tea

3.30 - 5.30 "Skills Based Learning for Carers" a presentation for professionals. Gill Todd
Saturday Programme 24th November 2012

8.45 Housekeeping and Introductions Charlotte Bevan

9.00 - 10.15
B-EAT our work with carers Susan Ringwood
Succeed Karine Berthou 15 minutes

10.30-11 Coffee

11.00 - 12:30
C&M Films Charlotte Bevan 10 minutes
Practical Skills for Carers, Workshop, Part One  Gill Todd

12.30 - 1.30 Lunch

1.30 - 3.30 Practical Skills for Carers, Workshop, Part Two  Gill Todd 
Register Now!
I can't make it
Charlotte Bevan

Thursday, 8 November 2012

A blog of pain

A.K.A. Naff off Hilde - you were wrong.

In her early theoretical work, Hilde Bruch argued that anorexia nervosa (AN) is caused by the failure to develop a diverse set of identities or self-definitions.(1, 2) Highly controlling and perfectionistic parenting was believed to limit the child's opportunities to function autonomously and to interfere with development of a clear and richly elaborated self. Bruch suggested that the adolescent turns to body weight as a viable source of self-definition and as a means of compensating for the lack of a clear identity and for associated feelings of powerlessness and incompetence. From this perspective, the adolescent's fixation on body weight and exaggerated desire to be thin are a maladaptive way of coping with identity deficits and of striving for a sense of self-definition, competence, and control.

Disturbance in the Self: A Source of Eating Disorders
Reprinted from Eating Disorders Review
By Karen Farchaus Stein, PhD, RN and Linda Nyquist, PhD
January/February 2001 Volume 12, Number 1

So I have had to have my mother admitted to hospital.  A very nice, cheery cottage hospital in the town where she lives.  She has heaps of visitors and flowers and cards, knows all the gossip and is allowed out for excursions with friends.  The nutritionist has rung and talked and suggested.  The nursing staff have acknowledged the MARSIPAN report (I am not sure they have read it cover to cover but it is very long) and placed the Restoring Regular Eating Plan and the Guide to Medical Risk Assessment in her notes.  Her notes read Anorexia and, as her GP laughingly noted, she is the only person he knows who has come in to be "fattened up" on NHS food.

I tried very hard to do FBT here, at home with her but failed dismally.  The Fairy Blogmother hit the nail on the head when she said  "re-feeding an elderly patient has no roadmap and doesn't have lifetime parenting effects". 

There is a very different relationship when refeeding one's child when compared to refeeding one's parent. As two very wise girls pointed out to me last night, there is a natural feeling somewhere that believes that your parents may be right and it is instinctive to follow their rules. For parents, to believe that their children might be right and to blindly follow their rules, goes against the natural order.  To enforce any kind of consequences for not eating upon one's parent is...well.....absurd really.

Do I blame myself? Yes. Do I think that she will be "cured" before her aging organs give out? Probably not - a sort of hope over experience wishes she does. Do I expect anyone outside of my immediate family and my circle of internet eating disorder friends to even begin to understand? Not really.

The scary thing is the manifestation of an eating disorder "personna" in its cruelest form is there. The personna that tries to alienate those who can help most, is definitely present, correct and fully functioning.

As for dear old Hilde's arguments: sorry, sweetie, this is no teenager with controlling parents who has not been fully able to develop a clear and richly elaborate self. Nor is it an identity crisis or a self-definition problem. It's an eating disorder that doesn't do tick box diagnostic criteria, international boundaries or only affect middle class white teenagers.

It started as an energy imbalance. I hope it doesn't end that way.