Support thread 14 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as old one is filling up

Its very common for one parent to end up being the one who 'deals' with the AN. I was my DD's safe space. My DH mainly supported me. He wasn't good at getting her to eat either.
Finding the balance between support and bad cop is not easy. I always tried to be bad cop to the AN and supportive to my DD. That's what made her feel safe enough to eat.
So although the AN was part of her I tried to separate them. So for instance the choosing meals thing can actually be very unhelpful. My DD has told me since that any choice given to her allowed the AN voice to assert itself. Any choice she made was not made with free will. And if she then felt that choice was not low enough in calories the AN would berate her over it, for hours and hours. Removing her choice was a kindness. She was able to blame me in her head to the AN. That's why I also bore the brunt of her aggression and violent outbursts. But ultimately it does work better.
Distress tolerance is a hard skill to learn, but invaluable. Basically saying little, not seeking to reassure much, just being a physical presence and acknowledging the anxiety, but not participating in it. I think mothers are generally better at it then fathers.
My DH would give in to her distress. Which would set us back.
In my head I likened it to forcing her to have chemotherapy or the like. Such treatments cause huge distress and awful side effects, but no one would side step that life saving treatment. Eating for an AN sufferer is the same.
Sadly working and dealing with this is unlikely to go well. It allows the AN back in and it will manipulate your DD and she is likely to skip food, lie and generally go down hill. I was with my DD what felt like 24/7 for months.
And I would also echo girlie, get the calories up asap. In any way you can. Insist on snacks, add calories to everything. The sooner the weight goes on the sooner things will improve. Although it is never a quick fix.

In other news, just to let those that remember our story know, my DD is thriving in Canada at uni and playing football.
In fact she often moans that there isn't enough food!. I have recently been over with what felt like a suitcase of British snacks!!
Full and lasting recovery is possible. Keep heart everyone still at the coal face.

Love this post 🥰 wonderful update!

My dd is doing well to, she’s done two overseas volunteer trips this year and more planned for next year, she’s just been accepted at Bournemouth uni for 2026.

For all the posters still in the trenches of this hideous illness recovery is most definitely possible, keep going and keep the good going in.

So lovely to hear this. We were deep in those trenches together. Sending love to you both. The support I got from strangers on the Internet, who just 'got it' honestly saved my sanity.

Oh @Lottsbiffandsmudge That is FANTASTIC news! I remember your posts so well. So pleased your DD is thriving. 🎉🎉🎉

And @Girliefriendlikespuppies Amazing news about your DD too! You and @Lottsbiffandsmudge and so many more were fantastic when we were all in the trenches of AN. Congratulations to your DD on the uni place and great news about the volunteering trips 🎉🎉🎉

@Lottsbiffandsmudge that's brilliant!

We had some stable months but I worry we are back on the rollercoaster. DD is now in school full time (year 10) and is starting her GCSE courses which is going well so far. She is really striving there. But she is hiding food again. We have the occasional massive meltdown (very physical towards me - I try to make it to the bathroom to lock myself in) - she then goes on a rampage through the house - it's really bad when she kicks off. Her psychiatrist gave me a stern taking to call the police or social services next time so someone gives her a a good prep talk. I am just so scared this is the beginning of the next cycle. DH started a new job at a different part of the country and only can come home occasionally so I am now alone with both DDs. My eldest attacked DD a few times and we had social services involved but case closed quickly as I do everything anyone can possibly do.
We were originally referred in November three years ago. I never thought we still would be at the deep on with this crap so far down the line. Weight wise she is cruising around 90%wfh and is stable-ish for now so I suppose it could be worse.

@Curlyhairedassasin how has the weekend been? You must be exhauated. I hope you have had some moments to yourself this weekend. Sending you strength.

Thinking of everyone.
This can be a very lonely life xx

Well DD is getting on ok in the unit. She’s managing her meal plan, gaining weight ok. We’ve started going in to do things like eating with her and she’s been allowed local leave. A member of staff took them to go wander round a couple of shops not far from the hospital the other day, so she’s actually left the ward for the first time in 3 weeks. I’m going over on Saturday to have lunch with her and then take her out for a couple of hours, and they’ve also been talking about allowing her some home leave next week if she keeps doing what she’s doing. I’ve made sure they don’t think we’re going to make her run before she can walk but dare I say it’s generally going in the right direction…

I’m glad things are going in the right direction, but gosh this does sound tough for all of you :(

we had our second appointment with CAMHS today (not counting the home visits) and in a week she has put on 1.2kgs (she’s now 30kgs) and her HR is up to 51 (it was 35 when admitted, and 45 last week). So that feels like a massive improvement already BUT bloody hell it has been hard fought.

She was up to about 2000 calories a day, which is our target, but the past few days she had really hit fatigue or overload and reduced a lot (1330 yesterday). While this is still miles better than it was, we feel miles away from any sort of normal life.

Shes allowed to try school next week (just until lunchtime) and I hope a bit of normality is helpful. God knows she is likely bored out of her brain. And while we try to do nice things, I’m just emotionally and mentally depleted.

The frustrating thing is she just doesn’t understand she is ill.

@SendTheNextOneIn I was really pleased to read your update. I hope the feeling of doom is lessening. It’s a horrible feeling. It really does sound like you’ve turned a corner.

@HappyRainbow123 good news about the weight gain. Was she low weight? I really hope you keep receiving the help you need xx

She was quite low. Dropped 5kgs in the last 6 weeks, which is a lot considering she is now 30kgs. I've been back at work a bit this week (still not come to terms with the idea of just being off, plus I'm self employed and have to pay a lot of outgoings for the business even if I just lock the doors) and this I think has given us a set back this week.

@HappyRainbow123 I totally get what you mean about the business. It’s so hard to know how to handle life when things are so bad.
That is such a tough time. I’m glad you’re getting support. It’s so much to deal with. Is your daughter responding to help?

Have they mentioned family based therapy or anything. We’re here to help and support you. We know it’s a lonely frustrating time xx

I think family based therapy is what we are having. Or going to have. The local team’s website day that is what they do. But I think FBT is basically teaching parents how to get their children to eat more, right?

We have had three appointments this week - one with the psychiatrist and psychologist and also two home visits. Next week we have one psychologist appointment and 3-4 home visits. We can’t fault their support, but she just flatly refuses to want to be helped.

I joined a peer support teams meeting last night (organised by our local CAHMS ED team). There was the leader and a psychiatrist to support, but I was the only attendee. Really odd that no-one else joined. While the 2:1 support was fab, I did want to meet others at my stage.

@HappyRainbow123 had the desire to meet others too, that understood the feeling of doom I experienced!

im so glad you’re getting support. They are used to people not wanting to be helped, they will do all they can for you. Great you’re getting FBT.
Did you manage school? Are they talking weight to height etc yet and saying she will have to stop if she loses weight. The thought of not being able to go can help them try and eat xx

On Tuesday CAMHS said we could try school next week, just a few hours each day. She’s been off two weeks now. But I just don’t feel her eating is “stable” enough to try yet. We have actually averaged 1900 calories this week, which feels really good, but it’s incredibly difficult - she won’t have breakfast, for example. She wants to go to school, and cries when she hears of her friend doing park run and me going on dog walks without her. But the desire to do these things does not overpower the ED.

@HappyRainbow123 I hear you. School is hard as it’s good for them to go, but as you say much better when they are more stable.
I know you will be longing for your old
life. I hope you get some time to yourself.
the ED is very powerful.

Thank you. Desperate for time to myself, but it’s just difficult right now. I really appreciate you talking through all this with me.

@HappyRainbow123 just knowing people care and understand can really help. We get things seem overwleming right now, in a way some of the hardest parts are sort of over as you now have help and it isn't all down to you. You can only do what you can, you do have to look after yourself too, as hard as that is.

Keep talking and know you have people here that will help and support. It's ok not to be ok.

@HappyRainbow123
If your dd really wants to go to school, this is your way in for breakfast. This is the approach I’ve learned and works with dd: ‘I love you so much sweetheart and know how much you really want to go to school and I really want that for you too because you want to see your friends and because you really like going. And in order for that to happen, it is important to eat before you go so that you fuel your body and have the energy to be there. And that means having a proper breakfast in the morning and to have eaten your meals and snacks the day before.’

Idk if your dd gets angry as that would have really antagonised my dd. And it’s really important to stay calm and ignore any vileness as that’s what the ED is doing to try and get you to back off. My response to whatever she said would be something like ‘I get this is hard sweetie and I love you so much. And we all really want you to go to school.’ If her dad is part of her life, a United front and working on this together is paramount. So use of we language rather than I is importanf.

I use a lot of Jenny Langley techniques and she does a well attended monthly zoom carer group. Her next one is this Monday and her email is at the top of the page. Ask her to add you to her mailing list if you’d like to join. https://newmaudsleycarers-kent.co.uk.

It looks as though you have plenty of support. But if you want to talk to other parents / carers, Jenny also runs a host of one off workshops on various aspects of eating disorders and wrote a 5 part workshop. The one off workshops make more sense if you’ve done the 5 part one btw. And that 5 part workshop is taught by a group of trainers working for the Charlie Waller trust including Jenny. https://charliewaller.org/mental-health-training-support/parents-and-carers/eating-disorder-workshops

@SendTheNextOneIn
It is good to read your update. I hope your dd continues to cooperate and that you’ve managed some rest.

I've been following the highs and lows of everyone's stories and hope all your DC are making progress. I am looking for some guidance from people with experience about what to do about our really poor treatment from our local ED team. Apologies for the length of the post.

I posted a few weeks back about my 15 yo DD. She has been restricting food since about March this year and visibly lost weight quickly. Several trips to the GP. Referred to ED team in August but heard nothing. Back to GP in late September and she had lost 7kg in 7 weeks so they did an urgent referral. Seen by the ED team the following week and she was very low weight - worked out at 75% wfh. Put on bed rest. Medically stable enough not to warrant hospital admission.

The clinician we saw couldn't decide at first assessment if anorexia could be diagnosed. This seemed to be to do with my autistic daughter not communicating that she was purposely trying to lose weight. She re-booked an extended assessment in 3 weeks and gave us a sheet of A4 paper with information about 3 meals and 3 snacks. She did follow-up with a check-up the next week. In the meantime I had found online evidence of extensive searches for calories, BMI etc so she said that DD would probably be accepted by the service after her next assessment.

Unfortunately the clinician we were dealing with then went on sick leave. She cancelled DD' appointment and left me with a phone number to rebook. It took me two weeks of daily phone calls and follow-up emails to get anyone to call me back. She eventually had her extended assessment two weeks ago and since then I have heard nothing. I've followed up with phone calls and emails but nobody gets back to me. I thought maybe contacting PALS?

In the meantime time DD has improved what she is eating. One good thing about being autistic is following the rules once they are set. I have been getting her weight and BP etc checked by the GP amd she has gained around 4kg since her lowest weight. Part of me thinks it isn't worth bothering with the ED team if they are so useless but I do need more guidance with meal planning at the very least and how to know if she is recovered. DD is also in Year 11 and the ED team said they would do a letter of support for the school which we need as she missed some assessed coursework through being on bed rest.

I'm just so frustrated by the whole experience. It's already such a stressful thing to deal with and it seems like we have just slipped through some kind of crack. From reading the experiences of others on here it doesn't seem like it's typical to just be left hanging for so long. It's now been nearly 7 weeks since her first assessment and we have received zero support.

My dc did not /does not say they are purposely losing weight so was diagnosed with ARFID. No difference in treatment as far as i can tell (the internet tells me it should be different) but they are an adult and don't comply with treatment in any case
I haven't really seen anything to distinguish ARFID from anorexia in them, they do the same stuff (over exercising, not wanting to get better or accepting they are ill, pretendi g to comply with eating plans, fluid loading, hiding food), the only difference i can see is they consistently say they don't want to be thin, but without wanting to be too cynical I'm not really sure why anyone would believe words over deeds. For the sake of getting support is it worth suggesting ARFID esp if your DC has an autism diagnosis?

@unbuckle My understanding of Arfid is very different to yours:
ARFID is not about body image or wanting to be thin. Eating is restricted because of sensory issues, fear of choking/vomiting, or just zero interest in food. Weight loss can happen, but it’s a side effect, not the goal. Overexercising, water loading, hiding food etc are classic anorexia behaviours, not Arfid.