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

[Curlyhairedassasin]

New thread as old one is filling up

Dd showed me a TikTok of the moment girls with ED clicked and got over it. Was so brilliant to read - it was when dd herself had turned a corner with it. One was “I was just too old for this shit” another realised the girl she babysat for looked up to her as a role model and was was mortified she was a bad one.

Just remember that the ED will make a liar out of the most trustworthy child.
She is def using the photos in some way that isn't going to aid recovery.
My DD bare faced lied to me constantly. It was all the ED

@TheaBrandt1 yes mine follows a few recovery channels. It’s actually helpful content. Luckily she recognises the toxic stuff on there. It took me a while to see that there was any good in TikTok at all. One good one is called Healing hattie.

I will check her phone but it’s hard as she’s 15. She said she keeps the photos as a record / memory. She ate an ice cream yesterday so that was one small win.

@Raspberrysins an obsession with food is normal with anorexia but you’re right to be suspicious. At 15 I would be policing the phone a lot tbh (and I did when my dd was that age.) Even some of the content which is meant to be about recovery isn’t really helpful when they’re in the grips of the illness.

Are you in all her appts? My dc was told by the dietician to upload photos of everything they ate - this isn't an excuse from the ED, they didn't ever do it as it would have alerted the team to how little they ate!

I've been here a year, no improvement no deterioration. I've learned to live with the ED, so has DC. It's not going anywhere.

I know in all the videos and guidance they go through meals out, Xmas etc. I wouldn't personally bother with it, its not a nice experience going to a restaurant or making Xmas dinner with someone with an ED, why put yourself through it? Why buy an easter egg that's just going to make them feel shit about themselves?

I’m sorry that you feel as though no progress can be made with your dd @unbuckle. It’s relentless with someone, who has ND, especially with demand avoidance in the mid. Have you attended any of the New Maudsley workshops? I really think it would be beneficial for you to feel as though you could nudge your dd along a little.

I have still bought my dd an Easter egg. Idk if it will be eaten by her or not. She said she wasn’t bothered. I’ll just give it to her and be really unbothered as to whether she eats it or not. Of course deep down she will be really bothered and want to eat it but I can’t do anything about that.

And I’m so fed up with this today. Dd was so happy a week ago. And her anxiety is through the roof again. She has been absolutely vile to me. It’s so much easier to cope with constant vile than happy and nice one minute then character assassination the next.

Basically it’s over a boy. And I get it. They’re in love with one another and both scared. They have been for almost 3 years now. And she was finally ready to make a start with him after ghosting him a few times. They were talking plans for the next couple of months. And she just needed a couple of weeks to get her head around meeting up with him, which he misinterpreted as another ghosting and has removed her from Snapchat and gone away again. And she won’t contact him. But she’s taking it all out on me. And her upset is because he’s now on the look out for a girlfriend so he doesn’t have to think about her, which is what he does each time. But it never lasts as the girl isn’t dd. There’s a lot of ND going on here btw.

And meanwhile dd is obsessed with wanting to be an influencer and go on love island and looking perfect and thin. Her favourite thing is to waft around Paris on the off chance that she will be ‘discovered’ and she wants to live there, keeps on saying she’s going to up sticks and move there.

She doesn’t seem to be able to understand that she’d never last living alone, never be approved to LI. We visited a university the other day. She said to me if she got on a course, she’d have to leave if she was picked for LI. She’s obsessed with leaving home, yet there’s an excellent university in commutable distance offering a perfect course if she can get the grades. But she wants to move miles away from me so that I no longer control her as she sees it - read trying to get her to admit she has an issue and to study so that she gets the grades.

The fact she can’t feed herself properly or take any quantities of food off a supermarket shelf escapes her. The more I think about that, the more I think she’s nowhere near ready to go. But what else would she do? She’s definitely not work ready either.

@Mummyoflittledragon there's enough time for her to realise of her own accord she's not ready (mine did) or to get better, even with the ED time will help her be more mature. They can claim UC as adults too ill to work, too, which allows a bit of independence.
I've been on every seminar there is, I think, but when it comes down to it, its not me who has to want to change

I totally hear you about wanting to change. I hadn’t thought about my dd not doing anything. She is so stubborn she’d run herself into the ground first. And because CAMHS were so useless, she has no diagnosis, so it would be hard. She’s also within normal weight range, albeit not the weight she needs to be to reach recovery and out of mental illness. I suppose we will cross that bridge when time comes.

Mine also has no diagnosis currently, but you can get UC and possibly PIP anyway, depending on other difficulties. Lots of kids do nothing the year after A levels for lots of reasons, so she wouldn't be alone and there is always another year and things like access courses if they don't manage a levels.

Lots of unis have a minimum BMI standard of 16, and 16-17 requiring to be under an ED team, so it was never an option realistically for my DC. But i do know anorexics who are successfully at Uni.

I think maybe people with EDs have such a high performing personality type its hard to imagine them being left behind a bit. But noone notices someone going to Uni a couple of years late

Oh ok that’s kind of reassuring. And I agree it’s hard to see her take any time off. The issue I have is she’d potentially subsume herself in social media and the idea of becoming an influencer, whereas university would ground her. She’s a very big fish in a very small pond atm - private school since year 9 as she couldn’t cope at state secondary. She’s positioned herself very much as top dog, most sought after by boys (not that she’s had a proper bf), most admired, most looked up to by the younger girls at school, hit girl etc. So in this regard, school is no longer healthy for her.

She really needs her bubble burst. There’d be a lot of people not like her at university. She’s already had her eyes opened in that respect as she was only interested in the MFL courses at Russell Groups. It’s not because they were RG. But the cities, she’s thinking partying. And hardly any of the girls at the taster days wore makeup let alone wearing tons of it, nor look like they wanted to be influencers and into Love Island… unsurprisingly.

People have told her she looks a lot like Peter André’s dd so of course she now watches documentaries on her etc.

And this is all the ED anxiety btw. Dd wasn’t like this pre ED. She was a DofE girl, loved the hikes and was very happy horse riding and was fine getting herself mucky, laughing at herself etc.

Mummyoflittledragon,
Dd changed from private school to state school and now uni.
She was also the big fish at private school but this in the end caused a lot of anxiety. I do not know how much this contributed to her ED, or her ED caused the anxiety. Leaving the little pond actually improved things a lot.

She now loves uni although her food anxieties and purging remain.
Has had a lot of difficulties trying to get more help. I was aware of unis guidelines refusing students if bmi is too low but apart from that she hasn't had any help despite asking for it. ("Ed too complex")

I have a sneaky feeling nearly all adult EDs are too complex for services, if they don't immediately have an epiphany and start eating 3 meals 3 snacks a day! It is so hard to watch.

@Mummyoflittledragon a lot of how you describe your dd resonates with me, my dd was similar a couple of years ago. When she came out with some unrealistic plan I just hmm ed and let it play out. Dd usually would realise on her own terms it wasn’t going to work.

Would your dd be open to getting a little job? I wonder if having something grounded and reality based might be good for her? My dd has had a PT job since she was 16yo and it definitely helped her mature, develop people skills and feel more independent. She’s been working FT since leaving college now and grown up a lot especially in the last year.

She absolutely would not have been ready for uni at 18yo but is going this sept age 20yo and I hope will love it.

Also don’t lose hope with the ED, dd has her ups and downs but I would say she is 99% recovered now and I never thought that would be possible.

@Girliefriendlikespuppies
Thank you for the words of encouragement. I do still hope she will recover. Progress is so slow. We now know she’s autistic and it’s been indicated by the autism assessor, who will also assess her for ADHD, that she has a lot of ADHD traits, so possible AuDHD, plus the demand avoidance.

I have suggested a little job for her. She is so unrealistic about what she could do. She’s got alerts set up for a 15-20k job. Dh and I have both‎ explained to her that she would need to start at the beginning and she can see her friends doing that. She totally poo poo’d the idea of a little job. I don’t think she will even consider any job anyway. It’s too scary. Having high expectations acts as a barrier atm. She has very set ideas once she works full time, eg she’s not going to work in an office sitting down. She doesn’t want to do that, boring. But she’s going to earn mega bucks etc.

As for university, dd unfortunately doesn’t just realise things will be tough if she leaves home. She needs real life concrete examples she can physically experience and lots of Socratic questioning. Eg She got offers for various places including the commutable one. The ED coach told us to make sure she goes to every university trial. Dd was persuaded she was going to Manchester and said it was pointless, she was definitely going and didn’t want to miss a day of school. We insisted and dh took her. She was so anxious that they were 1/2 hour late leaving whilst she decided what to wear. So that’s almost 2 hours getting ready. On arrival, dh said she was absolutely vile and declared she had never wanted to go there. She refused to go to Newcastle as it’s too far, when she had been clear she wanted to go as far away as possible and Newcastle had been her close second choice. We didn’t pursue this one as she sprung it on us very last minute. We’ve done the commutable university and she engaged with them, but still is insistent she wouldn’t be going, and is angry at me for making her go to the trial day. She’s set on Liverpool currently. It’s her dream place right now. We need to go still.

Then there’s the how does she look after herself and feed herself. I need to collate a list of the foods we currently get her from all the 4 supermarkets, including M&S, as some of the list is shop specific branded foods. She’s not going to want to shop at 4 places. So I’m going to suggest she can digest it and choose one over the summer and just buy her food from there as she won’t want to shop all over the place. She won’t like that, but right now she’s burnt out with relationship / friendship stuff and planning to ‘bump into’ the aforementioned boy on Friday, so she’s currently on a cloud.

@Anothersetback Thanks for that info. I also think being at her school is causing a lot of anxiety, however, it didn’t contribute to her ED. She was already very anxious beforehand. And she made it her mission at the start of year 11 to fit in with the popular girls. And she stopped eating lunch to be like them. And the anxiety drove her to be the most popular, most perfect, most beautiful. It wasn’t that bad until 6th form and I didn’t have a choice to send her elsewhere. The main criteria was familiarity and having food within easy reach. So the school canteen or coop next door.

@unbuckle
We had the same issue with CAMHS and dd. She was too complex.

It's difficult to know what is causing what. ED, anxiety, perfectionism, low bmi of any origin, autism, all interrelated.

If your dd goes the uni way, I have found applying for DSA useful. Even if you don't know what you are going to need.
On various websites advice is given for dd going to uni with an ED.
Freedfrom, new maudsley.
Redcan.
But as mentioned since dd was 16,as per her choice, I have not really been involved. We did not go the fbt route.
But she knows that I will be available if she needs a hug or an ear

@Mummyoflittledragon I would strongly encourage a year out if I were you, my dd was the same re open days when he originally looked at some. She was completely overwhelmed and it was stressful and unpleasant. A year on and it was completely different, she was engaged and I really enjoyed looking around them with her.

I wonder whether the far away unis is being driven by the ED?

I am still worried about my dd going to uni even though she is pretty much recovered, I think I still support her a fair bit by having loads of food in the house and making the bulk of meals. I am trying to encourage dd to cook a bit more and meal plan but she cooks maybe once or twice a week atm.

Im guessing (and this isn’t being judgemental) that you’re fairly wealthy if your dd was at private school and you have private therapists etc? Could that have given your dd a slightly skewed reality in terms of what things cost? I’m a single parent and although not as skint as I used to be I am very careful with money and that’s definitely rubbed off on dd.

Girliefriendlikespuppies,
Dd is year 2 and through DSA has a weekly meeting with a mentor. Not for academics, and not a HCP.
Just a person she can chat to, who can advise her if she is not sure about something. She likes talking with someone face to face rather than phone or zoom.
Sometimes it's an hour but currently I think only 30min.

Thanks @Anothersetback Ive just read up on DSA. What is on offer for your dd looks amazing. I hope your dd is getting the best out of it that she can. My dd wouldn’t qualify as its means tested. But it’s really good to know there’s stuff out there like that for people, who need it.

And yes, these issues are all interrelated and play a part in what’s going on with dd.

@Girliefriendlikespuppies Interesting what you said about university. I hope your dd enjoys her studies. Dd is truly on catch up right now. She isn’t happy with the courses she’s got offers for, apart from one, and it’s not where she wants it to be. But she refused the other 2 locations offering the course. She wants an MFL element and all the universities are dropping these like a house of cards, so she knows she needs to go for it. Her first choice was Nottingham before they pulled all MFL.

Yes, we are quite comfortable. The ED coach and private schooling all come from savings. And you are correct, dd is an absolute princess. I floated the idea to dh that we wouldn’t pay for accommodation for the 3 years (would have also been from rapidly depleted savings), but would help on her year abroad. He is going along with the plan. Dd has just about enough money given from gps on both sides for basic halls and if she wants to blow that, there’s not much we can do.

As for the ED, driving wanting to go far away, I think you’re totally correct. Dd herself doesn’t actually want to move out, yet she regularly threatens to move out to go and live with friends (and their parents). Apparently plenty of people would accommodate her. I’m sure they would for 5 minutes until they saw her issues. I ignore that now. It’s just waffle.

Ha re people accommodating her for 5 mins 🙈😂 I used to say if anyone kidnapped dd they’d drop her back home after about 5 minutes 🤦‍♀️😂😂

I wouldn’t say too much as ime dd talks the talk but doesn’t walk the walk iykwim, hopefully the reality of it all (moving out, going to uni etc) may start to sink in…

Oh dear 😬 Sounds like there may be similarities between our dds. Dh is still persuaded she intends to leave for university. Me, I’d be very surprised. She can’t organise a thing. She’s just got cross at me because I told her to get her key out of her school bag as I’m fed up of her going out without a key and coming back all hours. At least she thought about taking a key this time and wanted to take the spare, again. I’m trying to get her to take one with her systematically and leave it by the front door rather than in her bag.

As for ‘moving out’, she is friends with yet another girl, who has an ED. Unfortunate. Not the ones I mentioned way back. She doesn’t really see much of either of them. This one is at her school, in the year below and unfortunately they’ve become best buddies. This is ARFID and bullemia, not frequently vomiting by the sound of it. Dd says it’s resolved, she no longer vomits, I suspect not as as far as I’m aware she hasn’t had treatment. Her mother has no boundaries and a very large house, lots of money, so food and accommodating dd, no issue in the short term. Her house is party house and that’s how she’s trying to keep her dd happy. I suspect dd would last 1/2 nights tops on a normal school day and be dying to come home.

As for saying something, yes, I just ignore it. Best way I think.

Mummyoflittledragon,
DSA is NOT means tested, and you do not pay it back.
You can apply for it at the same time as student finance. But you can also apply for DSA without student finance.
We pay for student fees and maintainance, so form is slightly longer, and dd has to apply for it every year.
Btw, only the 4th mentor was "approved" by my dd...

I’m a little confused by this. On the .gov page it says that you have to qualify for a full maintenance grant. Would you please be able to signpost me to how we would do that. Either on here or by PM?

https://www.gov.uk/disabled-students-allowance-dsa/eligibility

Yeah that sounds a bit confusing.
But it's more as in DC should be allowed to apply for student fees as well as maintenance loan. Some student may only qualify for student fees (depending on settled status, course etc).

I would also say, you may not know what you need exactly, but that comes later during the assessment. First you just apply.

Ok thanks. Will get dd to look into it when / if the time comes.