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

[Curlyhairedassasin]

New thread as old one is filling up

Hey same here my daughter has been in CAMHS eating disorder residential unit for a few months which is hours away from where we live so I've moved which has been really hard for the whole family. She is home for a few days first time home since admitted I had hope it would good for us all. Sadly she has cried since she got home about having to go back and won't eat the meal plan. I've never been so sad in my life. ED is awful i feel sorry for anyone going through this.

I hope everyone managed to have a reasonable few days. DD was ok at home, although she still didn’t allow me to properly manage her meal plan. We have a care plan meeting with the ED unit in a couple of days so I’m going to talk to them about it to see if there’s any work they can do with her there to help her at home. I think she rebels here because she just doesn’t want to have to stick to such a regimented meal plan like she has to in the unit.
We did go to Meadowhall shopping centre yesterday though (she had some money for Christmas and wanted to go to her favourite clothes shop) and we ended up getting lunch from Pret A Manger, and she willingly and enthusiastically ate a white chocolate and raspberry cookie. So that was a win. She’s now back at the unit for a few days with her next home leave planned for 30th to the 1st. I feel absolutely awful saying this but I feel like today is the first day of the holiday that I can actually switch off and just relax. I try to be a lot less anxious about things than I was a few months ago (and the sertraline I’m now on is helping a lot!) but every time it’s meal or snack time I can’t help but be a bit on edge until she’s finished. And today I don’t have to feel like that. And I feel horrible saying that because I want her at home.

How is everyone?

Sorry to dump this here but I just needed to say it somewhere. I can't do this. My daughter was discharged yesterday following her third admission for anorexia on 23rd Dec and is now refusing to have her afternoon snack. The fuck offs/door slamming has started and I just want to cry. She does everything at the ed unit/in hospital but just refuses to comply at home. I'm so tired of this horrible disease. I just want my life back.

I'm in a similar but not the same boat. Discharged from outpatients despite low BMI. Doesn't eat anything on their plan
I wish I could help you @Frankthegoldfish , you are not alone x

Frankthegoldfish I know how you are feeling I'm worried about my daughter being discharged as she is still talking about losing weight when she gets home. Her hair has started falling out anyone else had experience of this im so worried it keeps falling out.

So sorry you’re all going through this.
Hair loss is very common. It’s increasingly happening to people on Ozempic. It’s when people lose weight quickly.

thinking of everyone. We’re here for each other. Keep talking xx

Hi, it does grow back. My daughter now has baby hair as it is growing back. She is now weight restored and her periods have returned. It was a great incentive for her as her hair is very long and very thick.

littlemissy12345 It's falling out in clumps can it all fall out or just thin out. Just another thing to stress about she has been in hospital for months and this week this has made her so upset and she now not eating her whole meal plan. Feeling so worried and upset for her sometimes i feel like she will never beat this.

Hi, this must be so distressing for her and for you all. We just had hair all over the house and everytime she washed it or brushed it loads would come out. So not so much clumps. I suppose the only way to help is to say that it will come back when you eat properly.

@Whyblendinwhenyoucanstandout I haven’t posted here for quite a while as my daughter is taking ownership of her own recovery and I’ve stepped back a bit. However, it has been a long road for us as she is neurodivergent. Her hair started to fall out when she went into intensive day treatment. This happened a few months after she had lost a lot of weight in a relatively short amount of time and her BMI was extremely low - so much so that she really should have been hospitalised. They told us not to worry and that it would grow back as she recovered, which it did. In fact, I think this was such a huge shock for her that it did provide some motivation for a while.
it didn’t fall out in clumps as such, but it became really thin and clogged the shower and hairbrushes. It was really quite shocking and it happened when she was refeeding. The baby hair started to show quite quickly once she was eating regularly again.

It’s such a difficult journey and I am so sorry for everybody going through this. I hope you have support for yourself too.

My daughter's hair fell out in clumps, has grown back and is now thinning so really reflective of her bmi. The thick hairs on her body also disappeared but she's older now and I don't know if they've come back this time round as I'm barred from seeing her naked.

Thanks for the supportive words. It is just so hard sometimes. A slightly better day today; she actually spoke in the camhs appointment instead of sitting in stony silence for an hour! She is obviously still calorie counting. Lots of google and calculator activity on her phone despite deleting the calorie counter.

Wishing magic wands for us all.

How do people deal with the anger and rage in their young person?

DD came home last night for the weekend. When we got home she refused to get out of the car to come in the house. Said she didn’t want to see DH and her little sister (who’s 6) as they just make it harder. Basically what makes it complicated is that DD2 is a snacker. Constantly wants to graze. And DH has said things to her along the lines of having to wait until after a meal to have a biscuit, or ‘no you’ve already had x today, you’re not having any more’. So DD1 feels like she’s hearing mixed messages, as I’m trying to get her to eat higher calorie foods and DD2 is being told she can’t have them. Also DH is on a bit of a health kick and does say stupid things like ‘I’ve not eaten any chocolate in x months’, like it’s a good thing.

Anyway. She got very upset when we got home last night and was saying she didn’t want to come in the house, she wanted DH to not be there as ‘he just makes it harder’. Long story short it took an hour to get her in the house and there was a lot of screaming, shouting and lashing out on her part, including her screaming at DH to go away, over and over again, when he came outside to try and help me get her in the house.

He does find it difficult to deal with this sort of behaviour, and thinks she should have negative consequences for acting out, whereas I am more likely to let her get it out of her system and we talk after she’s calmed down, and she apologised as well (as well as hitting me etc she shouted at me to fuck off more than once, calls me a bitch etc). The thing is, I know this is just the ED lashing out. She is normally such a quiet gentle mannered young woman. So this is not her normal behaviour. DH just says stuff like ‘I’d have been grounded for months if I kicked off at my parents like that’, and I just don’t know how to deal with it. I think I’m waffling a bit now, but does anyone else have the same sort of behaviour and does their young person get ‘punished’ (for want of a better word) for it?

My dd is an angry anorexic. It’s so hard. You just fill your loved one with love. If they tell you they hate you, say it’s ok because I love you and I have enough love for two. Lots and lots of loving texts with heart and blow kiss emojis. Lots of xxx. Calm, ignore the nastiness. It’s not her. It’s the illness.

Your dd is far too ill to have consequences for this behaviour. And it’s not even her. It’s the ED talking so you’d be punishing her for something that she can’t control. She’s already being punished enough by the ED, which is literally starving her. And your dh is screwing with her mind when she’s mentally ill and blaming her for it.

So I am with your dd on this one. If he can’t control his mouth and behaviour, her needs to leave her in peace until he can. No one should be on a diet around an anorexic or restricting a certain food type. That’s a no 1 rule. That doesn’t mean you can’t eat a balanced diet or decide to eat less chocolate. And he shouldn’t be talking about it at all, especially not in front of her. Idk how you haven’t screamed at your dh over this. That’s some arrogance. No wonder your dd is struggling. Poor kid.

As for your 6 year old. I get that it’s hard in relation to your older dd, however can you try to have the discussions beforehand to preempt requests when your older dd is maybe in bed or the shower? Maybe you could do 3 meals 3 snacks with your little dd and get both your dds to eat at the same time so that your older dd sees things in a more positive light.

As for any consequences these comes much much later when the ED voices are less in control. And you need to ensure it’s her talking rather tha. The ED. And consequences even then are very small. Stuff like removal of phone for an hour.

Don’t get me wrong, I am 100% on her side. I have had many conversations with DH explaining why I can just let all this anger from her just wash over me, because I know it’s the ED shouting at me, not her. He is not always the easiest to talk to and can take any type of (constructive) criticism personally and get all offended, so I have to approach these conversations with him in a tactical way. He just has a very black and white way of thinking, and eating disorders are all shades of grey, and sadly he’s not the best at empathy.

@SendTheNextOneIn I think you are right. This isn't a disipline or behaviour issue. It's the illness.
When my daughter was very ill we adapted our behaviour and conversations to avoid things that would cause her to have difficult thoughts as those thoughts would make it harder for her to eat. We didnt talk about nutrition or sport and avoided things like fashion during a meal. We didnt say anything negative about a meal.
For sometime she'd eat only with me. We'd try to get the mood nice, watching old favourite TV shows and looking at old photos. Any talk about restricting any food or food being good will trigger so many confusing and difficult thoughts. I think its worth reassuring your daughter when she settles that you know this behaviour was because she is ill - and it's not her. My daughter became very anxious and insecure and in need of love. I hope she settles at home soon. X

Here is my take
You need to have a serious word with your DH. Your DD has a life threatening illness and he is jeopardising her recovery. No one can be on a 'health kick' around an anorexic. Certainly not overtly. Everyone needs to model eating freely
So I would also let the grazing go in your DD2. The risk to her of eating a little too much is so much lower than the risk to the one with AN.
Frankly he hasnt got the right to be offended. You are trying to save your daughters life..nothing else matters.

I came back here as this was worrying me. DH really needs ro educate himself. Maybe get him a session with an expert? Will he read a book?

I wouldnt worry about second daughter snacking. We now let our second daughter snack as she wants. She is the same healthy sporty person and her behaviour really helped DD1 feel more able to eat.

The ED unit DD is currently in do parent skills workshops and the next course is starting soon so we’re going to be attending those, I’m hoping he learns something and takes it on board. I have got a few books now (Eva Musby’s book, When Your Teen Has An Eating Disorder, Help Your Teenager Beat An Eating Disorder, etc) but he’s not really a reader. I’ve previously suggested he look up Eva Musby’s videos on YouTube, will tell him again.

@SendTheNextOneIn it sounds like your dh has some disordered/unhelpful beliefs around food and it’s interesting that your dd recognises that. She will understandably be triggered by the sort of things your dh is saying and the fact he doesn’t seem to see that is really worrying.

If she had lung cancer I’m assuming he wouldn’t walk around smoking and blowing smoke in her face?

It’s also concerning that he is giving very unhelpful messages to your younger dd, anorexia is genetic and trying to restrict food for any of your kids is extremely risky.

I hope he does engage in the sessions at the ED unit but ultimately if he doesn’t and continues to sabotage your DDs recovery I’d be questioning my marriage 🤷‍♀️

@SendTheNextOneIn my husband sounds like yours. Also very black and white thinking. Endless talk of bulking for my older boys and running and refuelling for him. He has read the books, watched the videos and has 121 coaching from the tier 4 team. I’d say his understanding is now a bit better but it’s hasn’t massively shown in words or actions. That said he has loads of lovely qualities and we try to pull together as a family. It’s real life at the end of the day and united is probably a better front for us anyway. It’s a steep learning curve and we can only do our best.

It’s so hard to get everyone on the same page. In our family I carried the burden of DDs anorexia - I did the reading, the online courses, the research, I took her to appointments, I took four months off work to feed her, I did the FBT while DH worked without disruption to his schedule. Then he came home and did what he thought was best (which contradicted what I had learned).

It’s like one person has to take point and I can see how this illness damages relationships, but it helps to know lots of us here have felt the same, and it’s not just our dynamics.

@Glitterfarti I totally recognise this. I took on nearly all the responsibility for DDs recovery. Including all the learning/ reading/ support groups and changing everything that is percieved wisdom around food and feeding one's DC. Tolerating all her meltdowns, being her emotional punch bag, planning, shopping, cooking and getting the food in her, all CAHMS apppointments etc etc). My DH supervised her permitted exercise. And was too soft and didnt have the same will as me to battle. Obviously there were times I gave in when I shouldnt have, but mostly I bore the brunt of being bad cop.
The day I came home (from rare time alone) on a rest day (days when DD was permitted no activity, which were hell to get through with tantrums, more secret exercise than usual and massive food battles) and found them doing yoga together was when I lost my shit.
He just hadnt got the memo. He thought he was doing a 'nice' thing to help DD, actually all it did was hand power back to the ED. The smirk DD gave me when I walked in on them said it all.
They have to be on the same page, or you are fighting on too many fronts.

I also recognise. DH telling younger DC off for taking too much food. Refuses to do the carer courses as its the hospital's job. Blocks any discussion

We were offered the multi family therapy course, it was 5 days and is for the whole family, siblings and even wider family if involved. It was a big commitment but did really help us try to get on the same page. It was also supportive to meet other families in similar positions. The Dads there all had time to learn from each other and talk.