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

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

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sandytoes
‘Choosing’ to get better makes no sense, given the proof that AN is a biological illness, I get that. At the beginning of refeeding D was so ill there was no ‘choosing’ of anything. 

I can’t count how many professionals, and parents of recovered sufferers, particularly recently, have said to me that it will come down to D wanting to beat the ED. For the first three years I lectured them and fought the good FBT fight...

I’d say D is now a functioning anorexic, not fully weight-restored, but not ill physically. Mentally, the ED is ever-present. So I now wonder if it will not change until she decides she doesn’t want to live with those constant thoughts. 

Endless celebrities talk about ‘deciding’ to get better. A great thread on here not long ago explained that weight-restoration alone most often does not cure the sufferer, the brain needs rewiring. Well, that requires buy-in. We can’t go to therapy for our kids or do the work for them. So isn’t that ‘choosing’ recovery in a way?

Even Tabitha Farrar’s website says:

Having an eating disorder is not a choice. Recovery is.

I don’t know if I’m even asking a question or just talking aloud online. Maybe for the first time I’m hearing the parents who said they just had to back off and the sufferer has to want to fight it. It suddenly, at this stage, doesn’t sound ridiculous, or neglectful to me. Am I crazy?

(FYI, we still make a full dinner every night and monitor breakfast, lunch and snacks, and do blind weigh-ins weekly)
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kazi67
Hi Sandytoes
my d always wanted to get better, she knew something was wrong 

(unfortunately for us we didnt get professional help from the start) and made a LOT of mistakes and this has hindered her recovery)
but no point looking back she is getting better now 👍

so in my d case she did want to get better but the illness stops them
the illness took over her mind and it was up to us and her team of amazing professionals to pull her through it (so to speak)

and we all still do, recovery is slow and sometimes we don’t notice the little steps of progress in the right direction 

i think our kids need a village to slowly but surely keep pulling them through until one day you go omg life is kind of normal again 

that’s what’s happening with us anyway 

the illness IS NOT a choice at all!!!
but at some stage once over the “critically ill” part of it, yes they do have to choose life and living and positive behaviours over the illness

my d continues to have therapy so in that way she is choosing recovery too 

my d is now an “adult” but still at home and we will support her for as long as it takes 
I keep reminding myself if it was cancer would I get angry and frustrated at the slow progress?

i was sick myself for past 3 months and I think it taught me how frustrated our kids must feel at the slow process/progress of recovery 

i wouldn’t “back off” at all if I was you

when I backed off a few years ago (this illness tricked us all beautifully) my d ended up loosing all her weight plus more and nearly died was deathly ill and spent the most part of 2 years in and out of IP so NO don’t back off!!!

i am forever watching for signs the beast is trying to come back and I’m always “here” for my d 
she seems to need reassurance and a lot more TLC than my other kids but I guess she’s been to hell and back and that’s got to shake you up a bit 

I remind  her how far she’s come and try to figure out incentives for her to “choose” recovery/life 
x

 
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hardwork
I think that we , as parents and carers, have to see this as not an either or situation. Its not a case of in the 'blue' corner there is FBT and sufferer does not have to agree to anything it is solely about the family re-feeding until they are 'well' ...and in the 'red' corner there is sufferer has to have insight, want to get better and choose it for themselves.
In my experience we often are in the middle of this metaphorical boxing ring...sometimes my d wants to get better enough to really fight hard, other days she wants to stay anorexic and doesnt want to fight at all. and mostly we are in the middle...she knows she is ill, she does want normal life back , she knows she is the only one who can actually put the food in her mouth, but she needs us to keep drowning out the ED voice, us to keep her safe from it's rules such as purging, us to provide the food day in day out.

In the end they choose to put the food in their mouths...we cannot force feed them. So our children who are eating, or drinkign ensures even are buying in, are choosing to recover at that moment.

Even those being tube fed, if they are not pulling the tube out, that is a small bit of buy in/acceptance/ a tiny step that they want recovery.

For all those parents and carers in the trenches who feel their child just isn't trying to recover, doesnt care what this illness is doing to them or their families, i would urge you to think that even accepting an NGT is one tiny flicker of insight.
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silvermoon
I agree that every tiny step towards recovery involves a great deal of the desire to get better and slay the ED voice, no matter how small that step is a bite or a full meal, or refraining from purging one even on occasion. My daughter describes ED as a shouting voice that sometimes we her parents help it can be muted, but when she is left feeling alone the ED is impossible to ignore. It’s impossible to imagine this minute by minute battle of trying to silence the voice. We try take every day at a time and view every day that our daughter continues to keep fighting ED as her wish to recover. Id say we keep the hope of a full recovery at the ultimate goal we are plodding slowly towards. For us anything else is not conceivable. 
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hardwork
Silvermoon...we also only ever think about full recovery , anything else is just too frightening. and every bite is a step forward and we are slowly slowly seeing us inching forwards
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Foodsupport_AUS
My D is now 9+ years in. Even now there is mixed feelings about recovery. Early on she was miserable, but at the same time she could not see any way away from the misery and distress she was feeling. She did want to recover/ or die,  she wanted the terrible thoughts to stop but she could see no way through. At this stage we hold the hope for them, help renourish them. Later on as she was better nourished and time went on she had a lot less negative thoughts, she stopped wanting to die, she could see a future - yet even then she was unable to commit to work towards recovery - it was too hard, and the concept of deliberately gaining weight just too hard to consider. Now she feeds herself well. She still needs to gain some weight and is in a place where she acknowledges that this may be physically good for her to do so, at the same time she still really struggles with overcoming that anxiety. 
She is not truly choosing recovery, rather she is resisting thoughts of restriction, working on wellness. As has been said above it is not one or the other, rather a mix. 
D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
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Alwaysthere
Choosing to get better... a concept I'm still trying to understand. So it sounds like at some point the person will need to force themselves to follow all the steps outlined by their therapist and nutritionist. If it's to eat protein, starch, and a vegetable at every meal, for example, at some point they just HAVE to do it, is that right? 
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kazi67
Hi Alwaysthere
when my d was discharged from hospital she followed a meal plan (exactly, measuring cups of rice/pasta etc) as she was VERY rigid when first discharged 
After some time (and it took longer than we wanted it to) she became more flexible, stopped measuring everything, then slowly stopped following a meal plan (because she learnt what she had to eat EVERYDAY)
ie: 3 balanced meals and 3 snacks 

this was all whilst she was monitored by her therapist weekly including being weighed weekly

she was re admitted when she lost x amount of weight 
which was very upsetting at the time but also looking back it was necessary at that time 

everyones journey has twists and turns ups and downs and recovery isn’t linear, but the MOST important thing is to get the weight on wether that is by eating, drinking or if that’s not possible via NG tube 

They have to do it, that doesn’t mean it’s easy and they may need lots of  love and encouragement and support, medication can help too 
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mjkz
I think it is very different depending on the age of the person, how long he/she has suffered from an eating disorder, how much treatment he/she has had etc.  My daughter still maintains a lower than normal weight for her height but it is a good 20-30 pounds higher than most of her life.  While I would love to see her weight higher, her physicians at this point think she is healthy where she is at and gaining more weight probably won't make a huge health difference.  She never did regain hunger cues and really for what we've been though, it is amazing that she is still alive at all let alone functioning as well as she does.  This is a kid (still think of her as a kid-she's 25) who quit eating at 9 and has spend years inpatient.

At some point you do need some choice and it could be the choice that my daughter made which was I want a life that is more than laying on my bed doing nothing in between refusing to eat and living in a hospital.  I see it was choosing recovery but she doesn't. 
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