F.E.A.S.T's Around The Dinner Table forum

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sarahre

My 17 year old D is starting Week 7 of a partial-hospitalization program (she's there all day and comes home to sleep). This is her second time being treated for AN. The first time she recovered with therapy, nutrition counseling, and close parental supervision of meals. It is harder this time. She has OCD (a family trait), and is depressed about the future, feeling she has compromised her chances for a satisfying life (though we and others try to show her otherwise). The treatment program seems to be a good one. She is receiving individual and group therapy and is taking medication for the OCD and depression. She has gained 10 pounds from her lowest weight and is up and ready to go each morning. She's made a few friends there. But a persistent factor is that D insists she isn't sure she wants to recover. If there's no future to look forward to, why not stick with the ED, which makes her feel good in certain ways? Therapist says D spends sessions debating her on this issue, skillfully undercutting arguments in favor of recovery. I am sad and afraid, and also beginning to feel angry. D has many advantages that others don't as they battle this illness, and to not even *want* to get better is hard for me to comprehend. I understand it's a long, hard road, and I am ready to walk it with her, but if the ill person doesn't want to get well, what happens then? Thank you for any insights you may have.

Now 18 yr old D diagnosed EDNOS in summer 2014, weight-restored at home, relapsed with AN spring 2016, 2.5 months PHP fall 2016, now WR for 3 months.
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Torie
Hi sarahre - 

Sorry you needed to join us here. 

My d didn't want to get better, either, which is heartbreaking but very common with AN.  They can recover even if they don't want to, though - my d is proof of that along with many others here on the forum.

Frankly, the only thing that worries me about your report is that the therapist doesn't seem to "get that" about ED.  Usually, there's no point in arguing with ED sufferers because they argue like lawyers even if the gist of their position is to deny that the sky is blue.

It's great that your d is in treatment - I hope the rest of the team is knowledgeable and skilled in dealing with ED.  Please feel free to ask all the questions you like.

Welcome. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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OneToughMomma
Dear sarahre,

Welcome. Your d's attitude is very common, and, as Torie said, not a barrier to recovery.

I learned to acknowledge and move on. 'I see that you're upset.' 'I understand how you might feel that way.' 'That must be hard for you.'

I found there was no point in arguing, and would try to move the conversation along as quickly as possible.

The most important thing is that your d continues to gain weight. You should see her behaviour settle as she gets closer to WR.

xoOTM
D in and out of EDNOS since age 8. dx RAN 2013. WR Aug '14. Graduated FBT June 2015 at 18 yrs old. [thumb]
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Foodsupport_AUS
Welcome to the forum. I can see you have been reading for sometime. I am going to chime in and agree that it is NORMAL to not want to recover from anorexia. There are numerous research articles as well as experience here saying exactly the same thing, so it is surprising if the therapist doesn't get this. If on the other hand the therapist is doing Motivational Interviewing there would be a reason for the debate as this involves the therapist trying to help D find reasons to be on board with recovery. You might like to read this article which talks about the same thing. 

All of this does not mean she cannot recover or will not recover and many find with full nutrition that they become more motivated to recover. Hopefully they are insisting on this in her program.
D diagnosed restrictive AN June 2010 age 13. Mostly recovered 10 years later.  Treatment: multiple hospitalisations and individual and family therapy.
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mjkz
Just want to chime in and welcome you to this place no one wants to be.  My daughter has never voiced wanting to recover.  How can you want to recover from something that seems like it is problem to the people around you but not you? The inability to see one's self as sick is so strong in our kids and YA that recovery always seems to be something the people around them want.  I have learned not to listen, validate how hard this is for her and not even to discuss it.  Part of that is for my sanity because it is truly hard to hear someone reject help when it seems so obvious to those of us around her that she needs it.
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BattyMatty_UK
I, too, would like to say Welcome to our group. None of us have chosen to be here, but so many of us are oh so grateful that we joined. I, personally, found this forum to be a lifesaver when I joined in 2010 (when my son was just 16 back then and descending into anorexia at a fantastic pace; he is now nearly 23, fully recovered and at university).

It is normal to 'not' want to recover. Or, in our experience, for the illness to 'convince' (for want of a better word) the sufferer that they don't 'want' to recover. Underneath it all, as my son told me once he'd recovered, he was crying out for help, but the eating disorder's presence was just too strong. It really was like a vice-like grip. Now and again my 'real' son would emerge from what he himself admitted was a kind of false facade that the eating disorder created.

Back in the dark old days, our therapist would go on about how my son had to 'want to recover' before he could begin to get well. In desperation, I used to reply: "But what if he NEVER wants to recover?!!" She didn't have an answer to that...

In my experience (and I am sure it is similar with many others on this forum), it takes quite some time for the change to take place. It's not something that happens overnight, it is not a quick fix unfortunately, but it will happen.

Most helpful of all in the drive to get my son through his eating disorder was the support and inspiration I got from this forum, the friends I made through it and the reading material recommended on its 'parent site': FEAST.

So please do keep coming back to let us know how you're getting along.
Bev Mattocks, mother of 24-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver.
 
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Kali
Hi Sarahre,

So sorry you need to be here.
My d. was diagnosed at 17, is now 18.
It is normal that they do not want to get better. This can change though.
Our d. did not even think there was anything wrong with her at first. Then when she got so ill that she could no longer function in her daily life and saw what the real consequences of not eating were: disrupting her education, affecting friendships and family relationships negatively, the way the disorder was controlling her, having all freedoms taken away while in residential treatment and PHP, etc. she started to voice a desire to recover. But even now there is still a considerable amount of ambiguity about recovery, especially when it involves the weight gain. I think sometimes that her idea of the perfect recovery would be if she could just be skinny and underweight without the ed thoughts. 

My opinion is that especially when they do not want to recover that is when they really need us to take the lead and create a firm structure and expectations around eating at home, and to be in treatment.

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If there's no future to look forward to, why not stick with the ED, which makes her feel good in certain ways?


Is there some way that you can work with your daughter to inspire her that there IS a future and try to encourage her interests and motivate her like that? What did she enjoy before becoming ill? With our d. the motivation to do certain things in her life when she again becomes well enough has been a strong factor which keeps her in treatment and that is what she has been working towards. How can you tap into that?

Kali

Food=Love
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EB
Welcome here from me too.  Going to put some comments next to yours:

sarahre wrote:

The first time she recovered with therapy, nutrition counseling, and close parental supervision of meals. It is harder this time. She has OCD (a family trait), and is depressed about the future, feeling she has compromised her chances for a satisfying life (though we and others try to show her otherwise).  


The piece that shines out here for me, is that close parental supervision.  The rest - the therapy and the nutrition counselling are gravy to that meat and veg - they may or may not help to get the medicine going down, but the medicine is what you provided with those meals and it is the most important piece of any treatment modality.

On OCD - that can be as much a symptom of an eating disorder as a complicating predisposition; eating disorders act pretty much like their very own branch of OCD.  You treat them in the same way too - hold on tight and "challenge" the safety behaviours - understand that anxiety will go up in the short term as you do, but stay the course, monitor the anxiety if it helps as it rises and falls - and wait it out.  OCD is not a response to something real, it is a response to a fear that is not rational.  If we buy into its thinking, then we are lost too.

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a persistent factor is that D insists she isn't sure she wants to recover. If there's no future to look forward to, why not stick with the ED, which makes her feel good in certain ways?  

This is normal and we need to tune it out.  The reality is that she is unlikely to engage in treatment willingly - it will be terrifying for her.  She is going to need to rely on you to keep the faith, understand that an eating disorder is not compatible with life and living, and forge forward for her with what needs to be done and help support her during the process (in spite of the distractions that the illness may be whispering in her ear).  The illness will make a compelling case for why it is easier or better to stick with it than to recover - our job as parents is not to believe in that lie.  Fact Check it; read about it; listen to the parents here.  She is in a dark place now;recovery is what will illuminate a future worth looking forward to.


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Therapist says D spends sessions debating her on this issue, skillfully undercutting arguments in favor of recovery. 

Honestly, if the therapist isn't used to this, and/or doesn't know how to manage it, it sounds like she doesn't understand much about eating disorders yet.  I would want to cut my ties with anyone treating who doesn't understand that they are barking up the wrong tree if they are trying to manage an eating disorder through means of motivation alone.

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I am sad and afraid, and also beginning to feel angry. D has many advantages that others don't as they battle this illness, and to not even *want* to get better is hard for me to comprehend. I understand it's a long, hard road, and I am ready to walk it with her, but if the ill person doesn't want to get well, what happens then? Thank you for any insights you may have.

She didn't choose this illness and it is not within her control to either cure herself or to want to get better.  That is a feature of it.  If I were you I would try and channel that anger and quell that fear by reading as much as you can about the illness (the booklets available to download for free on the FEAST website here are a great place to start); know what it is about, know what to expect from it, then figure out how you are going to do what you did so successfully last time around - treat it with the requisite medicine - three meals, three snacks, every day.  

Sorry to be so fast and furious - just trying to jot some notes down - I hope some of them might help.

Erica, UK
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sarahre
Thank you, everyone, this is all tremendously helpful. One take-away, which is sobering but I must accept it, is that it may take a much longer time than I thought it would for my daughter to begin thinking differently about the disorder and about herself. She's added about 2/3 of the weight the medical staff want her to, but the resistance, clearly, is still there. I'll start trying not to argue with it, but simply acknowledge and work around it. I also may ask if D should switch therapists. I do think the current therapist is using the Motivational Interviewing technique, but at some point it becomes so circular that it's not working. I also think D feels especially negative about re-engaging with the outside world because she was perceived as a highly accomplished person, and having to leave college after a few weeks doesn't fit with that persona. She says she probably won't go to college, can't "ever" see her old friends, can't "ever" go back to the sport she enjoyed, can't see extended family, etc. She even says that she knows when she's being selfish or hurtful towards her dad and me, but she simply doesn't care. I think this doom and gloom is partly the illness and partly her attempt to ignite a parental blow-up by pushing our buttons until we can't take it anymore. She was a generous, considerate, diligent, and overall positive person for most of her young life. It's heartbreaking, and I know you've all been there. So, thoughts on that behavior are welcome, too. Again, thank you all so much for sharing your experiences. I think FEAST is going to become a lifeline for me.
Now 18 yr old D diagnosed EDNOS in summer 2014, weight-restored at home, relapsed with AN spring 2016, 2.5 months PHP fall 2016, now WR for 3 months.
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Torie
sarahre wrote:
She says she probably won't go to college, can't "ever" see her old friends, can't "ever" go back to the sport she enjoyed, can't see extended family, etc. She even says that she knows when she's being selfish or hurtful towards her dad and me, but she simply doesn't care. I think this doom and gloom is partly the illness and partly her attempt to ignite a parental blow-up by pushing our buttons until we can't take it anymore. She was a generous, considerate, diligent, and overall positive person for most of her young life. It's heartbreaking, and I know you've all been there. So, thoughts on that behavior are welcome, too. Again, thank you all so much for sharing your experiences.


Here's the thing: AN sufferers just can't think straight about anything Ed related, which is especially true of food, weight, shape topics, but their thinking about the future is also distorted.  Honestly, it's best to take whatever they say with a grain of salt during the period when they're under Ed's spell.  If she doesn't sound like herself, it's because she really isn't herself right now.

She's added about 2/3 of the weight the medical staff want her to....

Oh dear, I hate to be a wet rag all the time, but this is my cue to ask how the medical staff determined her target weight.  The number one mistake made by clinicians is setting the target weight too low, which has happened to MANY here (raises hand).  Most everyone here has found that their Ed-kid needs to regain ALL the weight they lost, restoring them to their previous highest weight.  And then they need a little more as a cushion because you sure as heck don't want to hang around the lowest possible weight that's consistent with brain healing, and then they need to gain a little each year, as is true for ANY teen / young adult.  (So they will need to make up the weight they should have gained during the time they were underweight.)

What sucks is that there's no way to know in advance how much weight gain will be enough, so please be sure not to let your d hear anything that sounds like a promise to let her stop gaining when she hits x pounds/kg. 

You can do this - you will get your d back.

In the meantime, please try to keep in mind that although your real d is in there, too, much of the time you are conversing with the ill part of her brain.  And there is nothing to be gained by arguing with an irrational person because, by definition, they don't process rational argument properly. 

Keep swimming. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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momon
Hi we saw a very different child when ill from malnutrition, including such bizarre features as OCD like crying for hours over global warming and her dog who had died a year before.  And she could argue up a storm about the hopelessness of the world, despite then being just 10 years old. But  nearly all of the negative garbage went away when she got her weight up and kept it up , and when plenty of time passed to heal the brain. I would focus on weight up, keep weight up, and see what issues work off as time passes. Try to be optimistic that this negativity and circular stuck reasoning is a result of temporary brain damage and will pass with time and healing of her body and brain by nutrition. Plenty of time, unfortunately, but I'll bet you will feel a lot better if you keep in mind that with weight restoration she will get better and then therapy will take her the rest of the way back to being herself again.
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EB
Going to respond against your comments again - sorry if it comes out all stacatto!

sarahre wrote:
She's added about 2/3 of the weight the medical staff want her to, but the resistance, clearly, is still there.

Resistance is likely until recovery starts to become fully apparent.  It is also likely to rise alongside any challenge.  Recovery doesn't come at an exact and calculable number, it comes when a body and mind start healing, and that place is going to be unique to every individual.  Keep going, keep pushing upwards; recovery will find you and resistance will drop off at about the same time, if you keep on going.

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I'll start trying not to argue with it, but simply acknowledge and work around it.

Sounds like a plan.  Remember, acknowledgment doesn't have to include enagagement; and work around, through, over - take whatever path works for you to avoid getting stuck in those circular unhelpful loops.

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I also may ask if D should switch therapists. I do think the current therapist is using the Motivational Interviewing technique, but at some point it becomes so circular that it's not working.
My experience is that you get to have a say.  You don't have to be a passive or grateful recipient of anything that is offered and no matter how useless or obstructive.  You can give anything/anyone a try, but if whatever is being offered does not appear to be working for your daughter, for your family, you can say so, and say why, and ask for a change in the programme.  If you ask for what you want you can help set the agenda, sort the priorities, and tweak the plan.  As an important part of "team recovery" you are entitled to play an active role.

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I also think D feels especially negative about re-engaging with the outside world because she was perceived as a highly accomplished person, and having to leave college after a few weeks doesn't fit with that persona. She says she probably won't go to college, can't "ever" see her old friends, can't "ever" go back to the sport she enjoyed, can't see extended family, etc. She even says that she knows when she's being selfish or hurtful towards her dad and me, but she simply doesn't care.

I hear you, and I have had similar almost cut me off at the knees.  We have a choice - we can allow this to destabilise the future, or we can choose not to engage in it and not to believe in it while we concentrate on full recovery.  Nothing is set in stone here - this is a classic negative view by a person with this particular illness.  You can leave her to be pulled down by it, or you can choose to throw her a rope and help to haul her out. The fact that someone doesn't appear to care doesn't necessarily mean a thing.  For what it is worth, and from my own experience with my own daughter, I don't think it is that she doesn't care, I think it is that she doesn't know how to behave differently - her behaviours when governed by an eating disorder are no longer in her control; she is ruled by anxiety, governed by fear, and looking as if she cares about anything much at all is probably just not within her gift right now.

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I think this doom and gloom is partly the illness and partly her attempt to ignite a parental blow-up by pushing our buttons until we can't take it anymore.

See above.  We have all had our parental buttons pushed, but we get to be the adults; to know better; to see a bigger picture.  We get to care about what happens next with our children, even when they don't seem to care about themselves.  You can talk about this, as parents; you can formulate a plan for what to do when you feel those buttons being pushed.  How can you help each other out to stay focused on the job in hand and not react to the illness trying to throw marbles under your feet?  View it as a tactic of an eating disorder - "Divide and rule" is a super effective strategy used since ages past! 

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She was a generous, considerate, diligent, and overall positive person for most of her young life. It's heartbreaking, and I know you've all been there. So, thoughts on that behavior are welcome, too.
I am prepared to bet that she still is still that same person.  Bear with her while she gets well; help her to get there - she will be able to be all those things again once she is unfettered by this illness.
Erica, UK
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AuntfromBoston
One mother told me the best help she got re her daughters anorexia nervosa was from the veterinarian.  Behavior counts.  Words are important, but during recovery don't spend too  much time there.  Eating counts.  Weight gain counts.  let the words slide off you.  at the moment, they are relatively unimportant and not worthy of deep thought.    Now eating, that is worthy of very deep thought, and just keep it up, and it usually sorts itself out.  Easier said than done, but possible.
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AuntfromBoston
One mother told me the best help she got re her daughters anorexia nervosa was from the veterinarian.  Behavior counts.  Words are important, but during recovery don't spend too  much time there.  Eating counts.  Weight gain counts.  let the words slide off you.  at the moment, they are relatively unimportant and not worthy of deep thought.    Now eating, that is worthy of very deep thought, and just keep it up, and it usually sorts itself out.  Easier said than done, but possible.
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mjkz
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but she simply doesn't care.


I think it might be more that she doesn't see a way out yet and does care. One of the downsides of being a high intelligent very accomplished person is that often times you are expected to perform well (whether or not it is true) and people get used to you having an answer.  When you don't have an answer that makes any logical sense, "I don't care" feels like an answer.
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