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.