Support thread 12 for parents of young people with an eating disorder

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Suddenly noticed the old thread is almost full and thought I'd make a new one.

@Mummyoflittledragon

That is difficult, I guess I have had it easier as DD has been on bed rest since November last year, her outings are blood tests and CAHMS appointments, with the hairdressers and nail bar thrown in as a treat. She would love to go out with her friends and school is a distant memory! I hope you manage to get your DD to her appointment, it’s good that you have leverage and that she has eaten well this weekend. 🩷

Just catching up and wanted to reply to @SicilianOrange and @guineapigsrule re. Relapse. My DD is still in the active phase of recovery so we haven’t encountered relapse yet but it is something that plays heavily on our minds.

She has spoken to her therapists about it and they have reassured her that she and I know so much more now that even if she does relapse, she will be much better equipped to pull herself out of it. Another big concern is that her anorexia will turn into binging or something else and again they offer reassurance saying that they would treat that just as seriously as they treat anorexia. so the key to me seems to be not to stop treatment too soon. Although I appreciate this is easier said and done when the NHS is in crisis mode.
@Glitterfarti your DD seems very similar to ours. She coasted along on the bottom for a long time and I always thought it could go either way. Unfortunately, things didn’t go her way and after she split with her boyfriend she spiralled downwards at an alarming rate. I don’t know if we could have prevented it but I do regret sticking with the NHS ED service in our area when they couldn’t possibly give her the treatment she needed as so many others were in a much worse situation.

Thanks @Shanghai101. She's turned it round a bit but doesn't have the same level of determination as she did. She's told us that she feels like she's "failed" as she didn't go into a psych ward, and therefore she wasn't sick enough. So she decided that she had time to go into hospital because we managed to get tickets to see Billie Eilish but the gig isn't until next year. Such twisted thinking from the AN.

It's so slow going as well, she still controls what she eats, has decided to face some fear foods but then admits that she compensates for them. It's infuriating.

And she didn't have body dysmorphia before, but now she does because the AN has messed up her brain chemistry so much.

Added to this is my youngest (14DS) refusing school, I feel like my fingers are on the cliff edge and I'm slipping. And then I find myself secretly wishing I could fall.

Hi mummy I think you have to separate the ED from your dd, it's not your dd trying to control you it's the ED.

I agree you have to be firm but also pick your battles. Dd was given no choice but to go to appointments, she rarely engaged while she was there though. I did let a lot of stuff go but was hardline on things like keeping dd out of the kitchen, making food decisions in her best interest (adding cream etc) and expecting her to eat what I gave her.

Dd can be demand avoidance but there is also part of her that hates being in trouble so even though she swore and shouted at me, kicked off, chucked plates, ran out the house etc if I was consistent and didn't back down she did eventually relent. You could almost see the relief in her eyes when this happened as they do desperately want to eat it's just the ED holding a gun to their head that stops them.

A music festival is great leverage but I would absolutely follow through if she's not eaten enough. They have to want something more than the desire to starve themselves.

I am so sorry to read of so many young people struggling. I have read all your messages. ❤️

@Dinnerisburnt
Thanks. I don’t think it’s easier to have your child at home when you know they could be having some of the most wonderful times. It sounds as if you’re doing a great job at looking after your dd.

@Girliefriendlikespuppies
Thanks for the advice. I understand what you mean about the ED trying to control me. She does also have a looong history of trying to control me so it’s hard to differentiate between the two at times. I suppose the ED is the part of her, which is absolutely vile to me. And she’s vile a lot of the time…

I am attempting to get her to engage with private support and will see what they and CAHMS say about eating what she’s been given. I have never given dd something she won’t eat. She had ARFID type tendencies right from a baby in terms of variety, which I dedicated a lot of time to widening the older she grew.

You’re right about having to want something more than starving themselves. Dd wanted to stay over at her friend’s house Saturday night. Having stayed at another friends and coming back really ill a couple of weeks ago, I was determined she’d either not go or eat well both before and when there. She chose the latter. Sadly she’s ‘too full’ today having probably managed around 1000 calories Saturday and the same Sunday and refusing to eat til dinner time…

I get the control thing. My dd has always had a skill for that over me@Mummyoflittledragon
@SicilianOrange hope you can keep holding on. It's so so hard.

Hi everyone, I haven't been on here for a while. I've had a brief skim through and I recognise lots of names, sorry to hear about the relapses.

Dd (15) is doing ok so I thought I'd update as I always liked to have a positive story to keep me going. We got to around 100 wfh and DD made it abundantly clear she was never going to engage in therapy so CAMHS are discharging us.

We are solidly in phase 2 of FBT so it does feel ok to be discharged. We're getting her weighed at the GP surgery. She did lose some weight but the threat of going back to CAMHS helped motivate her to eat more.

She will get her own breakfast, pack her lunch and get her afternoon snack. She can order and eat in a familiar restaurant.
It's incredibly hard to trust her to eat out of the house unsupervised though.

The most positive step forward is getting on the waiting list for a private autism assessment. The NHS waiting list was 3 years!! Her mental health has improved dramatically since CAMHS have been open about their opinion she is autistic and we've referred her for the private assessment. It's really interesting to hear so many of you say your DC are either diagnosed or likely to be.

This whole shit show started just over a year ago and my mental health has taken a pounding. I'm on ADs now. But I do feel better than 6 months ago.

I hope you all have the support you need to claw your way out of this!

Yes, I upset dd yesterday because I was tired and snapped back at her vile behaviour (yes I know it’s the ED, I was shattered, I’m not a well woman). Not the right time as she had an exam and was very off with me afterwards. I went into her bedroom to talk about it and we ended up talking to her about the control issue. She feels controlled because I tell her she needs to eat to be able to go to dancing… if she didn’t dance, she would not eat at all so this is a balancing act. She thinks that’s me controlling her. I explained (again) this is me keeping her safe and that if she doesn’t start eating better soon, this will reach a tipping point and she will simply have to stop going.

It’s also been going on all our lives. My friend when dd was half way through year 1 gave me a number of a child psychologist and told me there was a big problem. I was too ill to see what was going on. Dd had suddenly realised how different I was from the other mums and stopped developing emotionally as soon as she started primary school so she had 18 months of catch up required.

I lose my shit frequently with her at the moment. Not proud of that obviously. But I'm only about 10 seconds away from a mental breakdown and I'm doing my best. And I'm already on HRT and anti-d's from the last time she had this, so I don't see what else can help.
We're basically in week 1 of fighting this thing again and I'd forgotten just how hard it fights back.
I hate myself for not being what she needs.
I hate that I can't take control and make her eat what she needs.
There are families out there leading normal lives. Not spending hours negotiating about a handful of nuts.
I've got a lot of anger. Probably need therapy but can't afford it cos we're paying for hers.
Rant over.

Bless you @guineapigsrule. I am having therapy rather than dd atm. Unfortunately I cannot stomach antidepressants, am on hrt. I know the hard work is all ahead of me as dd is still just eating what she wants, which isn’t much. I have made contact with the clinic you advised and dd has agreed to a 20 min chat with them next week as well as to go to CAHMS. So we shall see.

Have you heard of grounding techniques? Idk if this will help? Or calming hypnosis type youtubes, plenty of these around. If you are more ready for woo stuff, there are grounding, centring and protecting (also called shielding) techniques, which really work for me to put me in a safe bubble, where I can retreat to and reduce my stress levels. There’s a lot of stuff in this you may not want to read about. But for me at the core, this is about focusing on me rather than the world outside so I can put my oxygen mask on first and help dd.

Sounds like sensible stuff @Mummyoflittledragon self care I guess.

Hey @guineapigsrule - I could have written your post. I'm struggling with the same stuff at the moment, I feel really upset / angry / frustrated we are in this pit of shit (sorry to be so sweary - if you can imagine my mind I'm almost yelling those last three words to myself in a totally ragey way 😂).

I tell myself all the time to be this calm, loving, all-accepting mother, but the constant twists and turns in her mood and behaviour just throw me into a really anxious state, and I am not my best when I'm anxious.

After another day of lunchtime stress I've been thinking about how to move forward with this. I'm signed off work for a couple of weeks which helps, but obvs not a long term solution, and I'll end up getting the sack at this rate (which I'm also angry about - I really like my job!!). I think I need to find some kind of therapy or coaching for me to help me figure out how to manage myself in the moment and respond differently. Not sure how to find that, but that's what I've come up with today...

Keep going. You WILL be doing a good job, it's just so hard. X

@greydoor
There’s loads of online therapy if that helps as you could perhaps fit it around work.

Thanks @Mummyoflittledragon, I think I'll need to do that, I'll start having a look around. This whole thing makes me feel so deskilled as a parent, but I'm also a mental health worker myself and usually have really good distress tolerance skills, and am usually able to cope with situations which are very demanding. Not transferrable into personal life it seems though! I think the relentlessness of supporting someone in your family with ed really runs down your reserves - I'm fine with everything day to day, but when there are extra demands either at work, home with my dd, or home with my other kids and parents and all that, I just feel stuck. And I'm bloody perimenopausal too which doesn't help!

Trigger warning- ⚠️

Does anyone else feel like they have failed as a parent to have a dc with AN?

Cantfindthewordsddstruggling
Ha ha yes;
When not once but twice it took me at least 6 months to realise DD was purging.
When my brother said it was all due to gut health and one should eat healthier. Quoting all kind of scientific papers.
When I realised there was such a big genetic component and I should have known better with a big family history of ED.
When I shout to DD how stupid sheis to ruin her life.
When, well do I need to go on?

My destressed has been sudoku . It is not too difficult to do but at the same time it stops my thoughts going round in circles.

@Slowlyimproving thank you! So many what if’s. It’s every parents worst nightmare to be dealing with AN. They morph into versions of themselves we don’t recognise. It’s this never ending marathon we didn’t sign up for.
DD is an only child and for the first time ever I’m grateful that I don’t need to worry about siblings being affected by this monster of an illness .

@Cantfindthewordsddstruggling - oh blimey totally. I blame myself for how I have parented my dd, and for potentially creating some kind of environment which makes an ed thrive. And for not putting the pieces of the puzzle together sooner.

And, here's one final ridiculous thing - we had to have quite a lot of fertility treatment just to have our kids. The other day I was going over in my mind how I should have just accepted infertility, because it was clearly nature's way of telling me I couldn't be a good enough mother 😢

@greydoor please have some very “unmumsnetty” hugs 🤗. Reading your post is utterly heartbreaking.

The whole situation is constant unimaginable suffering. DD has been having constant panic attacks and is also suffering from social anxiety. I just can’t get my head around the change in the last 7 months.

Thanks, right back at you too 🤗

My dd is having panic attacks and social anxiety too. I think they are one of the reasons ed was able to rise up - not eating dulls a lot of emotion. Now she is eating the emotion is much more intense and she is struggling. I hate that I can't take that away for her, it really makes me feel useless...

I know in my rational brain that it's a long road to get out of this. I'm fine with working hard at things, but not having an end point to see, even in the distance, is so hard for us all.

"It’s every parents worst nightmare to be dealing with AN."
Not sure about that. It's something that never ever crossed my mind before and never realised how it impacts others.

Yes to this anxiety. Weight has been more or less restored but still so much rigidity and anxiety. Autism has been suggested, but when DD was younger she wasn't like this at all. She was up for anything anytime with anyone

@Slowlyimproving perhaps not the best way to explain myself but I was meaning being in the position of having a child with AN is an utter unimaginable hell. My only knowledge of ANA previously was a documentary I watched a number of years ago. Bizarrely this was how I knew to ask the gp to blind weigh DD.

Cantfindthewordsddstruggling

Yeah. I know. It's just it's something that you wouldn't have thought of and even when vaguely knowing about it, no idea at all what it entails. How effect it can have on SC and family.
Also the combined physical and mental effects makes it so difficult.

And even though DC is much better than last year it will have much longer consequences longterm. Consequences that friends don't seem to realise.

@Cantfindthewordsddstruggling yes so much. I was a fussy eater as a child and got better as I got older and from my early twenties ate a wide range of foods - never had an ed as far as I'm aware no one in our families has either. When my son became fussy I wasn't too concerned and just encouraged him to keep trying as I knew how it felt then this hit and so many people are saying if you'd pushed him when he was younger you probably wouldn't be in this mess if you hadn't allowed him choice around food but it was from him being two years old he would gag and wouldn't eat for days unless he had certain foods. I feel judged and like I've let him down and then my poor daughter being dragged alone on this shit show with us I dread to think the impact it's having on her even though she's putting on a brave face.