Support thread 10 for parents of young people with an eating disorder

[Lottsbiffandsmudge]

Hi guys
Here is our new thread. I will add a link to it in Thread 9

Also although it says its for people who are not yet in treatment I know of people who have been accepted where they are technically under a team but are receiving little support from them

Greydoor

Getting to weight restoration stage is great but their brains can take a long time to catch up. My dd looks well on the outside but still has many many MH issues and she's particularly hard on me. She can be volatile and emotionally manipulative and it takes a lot of time and effort to keep things as calm as possible in our house. It's exhausting. Hang on in there. It's very hard not to have low mood as a carer for someone with ED and christmas time is particularly hard as every tv show or movie seems to depict perfect families. I miss my 'old' dd and our old Christmases so much it's like a physical pain.

Hi everyone. Apologies in advance for the long post! My DD1 is 21 and has a long history of struggles with eating. Diagnosed with anorexia at 15, but there was a good 18 month history of restriction and overexercising that I was almost completely oblivious to.
I of course could tell her diet had changed during the later of these 18 months, but I assumed it was just a mixture of her being a very picky eater (as she has been all her life) and dieting fads that many teenagers go through. So when it all came to a head at 15 and our lives were thrown upside down, I was furious at myself so not picking up on it sooner, or even not for mentioning something when I noticed subtle changes.
When moving towards adult support was suggested at 17, she made the decision to not progress with adult services, a decision supported by us and her CAMHS team due to how well she was doing. Since then she has been thriving, but I’ve also been watching her like a hawk in case something changed nearly 5 years on since stopping recovery with medical support.
She has just come back for Christmas from 4th year of uni, and almost immediately I noticed a shift in her. The way she avoids talking about food, or the way she acts at the table is just characteristic of her 6 months prior to diagnosis. When I gave her a hug after not seeing her for 2 months, I could feel her spine and ribs like I could when she was very unwell. She’s always been slim, so even when she had a good diet, her bones could be felt, but I still feel she must have lost weight. She’s had an insanely stressful term, so wonder if it could be down to that, but wouldn’t want to rule out a ‘relapse’, especially when taking into account her behaviours.
In effect, I don’t know what to do. I’ve never had to communicate with her regarding her ED except for when it has been common knowledge between us both. Never when it’s a suspicion. It’s always been something we’ve had in our lives when she is living at home, prior to university starting. How do I bring it up to her with losing a trust that we have spent years building up again? Don’t get me wrong, I’m not going to ignore it for my own comfortability-sake, but she’s back at uni for another 15 week term in less than 10 days. What if this is a relapse? How do I help her when she is in a city halfway up the country?
I’m panicking and I’d love to even just hear someone tell me it will be okay and we will figure it out. I’m sorry for how long this was, just feeling alone in this. Thanks guys xx

Ginger lady, no real advice. With DD starting uni next year this has been worrying me...
DD was under camhs for a short while when she was 14. Discharged as we thought everything was fine. A year later I realised she had restarted purging (and in retrospect had at least for 6 months, did she ever really stop??).

Anyway I did just ask her straight out, and I think in a way she was relieved "she was found out".

The uni DD is planning to go to does seem to have good services for MH and on their website it mentions eating disorders as well.

I know that at her age they can not talk to parents but parents can still talk to them..When I was worried about my other DC at uni I emailed Student Wellbeing Services and they did phone DD to check on her.

There is an information file on freedfromed that camhs emailed us, it's more about starting uni but maybe helpful?

And for what it's worth, I have already been checking on hotels near dc2 uni so I can visit frequently to try and keep an eye on her.....

All so difficult as ED just seems to make someone sneaky and in denial.

GingerLadyRose

It's very very hard when you've have a period of calm with ED to have to open the box of worms again but she knows she is struggling and will probably eventually feel some relief to be able to get her feelings out in the open with her mum, who she knows she can trust.

I'd start with asking about the stress she's having on the course to open up a conversation. Then see if you can pinpoint anything else which may be causing her anxiety such as friend/romantic partner/social issues. Or maybe there's an issue with her living arrangements - can she easily cook a meal for herself or is she taking short cuts because the kitchen environment is stressing her? Students do tend to eat and discuss food a lot and maybe she's struggling with being around those conversations? When she had ED in her younger years did she struggle to eat in front of others? Innocent remarks from others about what she's eating or how she's eating may be making her too anxious to eat. It could be a mix of all the above. It's often hard to pinpoint just one trigger.

Stress that you are there to support her and will do anything you can. If there is a practical issue with preparing/eating food you could ask uni if there's anything they can put in place for her. If it's an anxiety/emotional issue uni will be able to offer help there as well. I'd offer to instigate support for her at uni and keep following it up for her. And yes as Temporarymember says I think you may need to visit as much as you can for a while.

I posted here a while ago, my DD was given anorexia diagnosis in November, thought it had been since September that she had been restricting. Turns out it’s been going on for over a year. Found her twitter account which has opened up a huge can of worms. How the heck can X allow this to happen? I am in state of shock at the shite allowed on that platform. Just terrifying.

@GrannyRoberts Thank you so much. Mission enriched milk accomplished. She swallowed it (literally) without any fuzz!

What was she looking at? I've seen some awful stuff glorifying ED on Instagram and tiktok that I always report. One I saw yesterday was a person doing a 400 cals a day diet plan. Even people who are morbidly obese need more than that. My 5 kilo cat has 300 cals a day!

It's not your fault. These companies make a shit ton of money and should have systems in place to stop this stuff being out there.

@BagpussSaggyOldClothCat

she’s not just looking, she posts. I don’t really understand all the acronyms being used. Celebrating when she was 2kg off bmi 13, and again at 0.8 away, new target is now 12.

She’s very active on TikTok too, but haven’t been able to access that yet. At 16 it’s hard to make the call on banning all social media. Plus she is at a treatment centre which she can refuse because of her age. Next step is being sectioned if she continues with her decline.

Dinnerisburnt

I dread to think what dd was seeing at 14/15 when she was struggling with ED but before I realised. She's nearly 18 now and has told me some of it. I report all Eugenia cooney's posts but somehow her profile is still there 😞

Well done @Curlyhairedassasin! You've got this.
I hope we all have an ok day tomorrow, I've never felt so miserable on Christmas so trying to put on a happy face for my youngest who is super excited.
I have reported Eugenia several times to TikTok and they always reply with the same crap, she hasn't breached their guidelines and I'm welcome to block her. She needs help and others see her as an inspiration, absolutely terrifying.

@Curlyhairedassasin that's great news! So glad it worked. Fingers crossed it makes a difference.

Wishing everyone as peaceful a Christmas as possible and thank you all for another supportive year ❤️

Merry Christmas everyone. And thanks for all the support. You guys were my rock a few times this year. ☺️

Happy Christmas to you all. Thank you all for your support this year, you really are the most amazing group of women. I hope everyone's day tomorrow goes as smoothly as possible.

Merry Christmas everyone and thank you all for your wise and supportive posts. Directly or indirectly they have all been instrumental in getting me through the darkest days

Happy Christmas all! Thanks for all your support and wise advice - you are amazing! And may 2024 be better than 2023 for all of us and our kids!

Happy Christmas everyone, just wanted to come on and thank everyone for the support, advice and space to rant! I don't know where we would have been without this group of courageous and steadfast folks.

Hoping for all the best for you all in 2024.

Thanks again 🎄😘

Happy Christmas to the most kind hearted, generous, helpful women who keep us all afloat at times we need it.

If today is a struggle, do what you need to get through and hold on to hope that brighter days will be in your future...

@Glitterfarti i think your right , your husband does need to make sure she is eating as it’s very sneaky. My dd has been hard work the last two weeks taking ages to eat her snacks , have to keep nagging and the tears come out it’s very stressful but you have to keep nagging even if it takes 90minutes. We find it better if we eat with her because she always compares what we eat and says we eat less ect , if we eat with her she feels less self conscious.

Merry Christmas all, I’m a bit of a lurker, but read your advice to each other and nice to know we’re not alone.

I’ve checked dd phone and she’s still looking up calories. I guess this is normal 9 months in? Her sports clubs have stopped over Xmas and she’s stressing about her exercise we went for 5k on Boxing Day now she’s asking if we can go again. tomorrow. I’ve seen on her phone she’s looking up how much running burns calories. I told her it’s ok to have a rest and she shouldn’t exercise everyday so now she’s counting on every other day. She does usually do sports five / six times a week she has three meals four snacks but I think she’s obsessive about exercise. Not really sure what to do. I don’t mind her going if shes eating enough but I feel it’s still got a strong hold on her. She has always done sports since a young kid but is she really doing it cus she enjoys it or because she wants to burn calories. It’s a fine line.

Whippet I've not totally caught up on the thread but the checking calories on her phone needs to stop. Does she do it on an app you can remove? There are ways of banning certain internet searches on phones as well. Ultimately if she can't be trusted to not check the calories I would take the phone away for a while.

Re exercise I would advocate nothing over a 20 min gentle walk a day. This is what I was told my dd could do. I found the more exercise dd did the worse the anorexic behaviours were, she would actually eat less if she did more.

I hope everyone has had an okay Christmas and it's not been too stressful.

Ours was a bit overshadowed as I came down with covid on Christmas Eve 🤦‍♀️ so annoying and I missed most of Christmas Day as felt so ill.

Dd has been up and down but I think this is to be expected this time of year. She has done okay overall I think, we stayed at my mums for a few nights which she finds stressful but has cheered up now we're home.

I'm still feeling ropey and have spent the day on the sofa.

@Whippetlovely it is so difficult. My DD was very like yours. She 'had' to exercise. The days we imposed as 'rest days' were hell. Her sport was our leverage. She didn't eat all her meal plan, she didn't do sport. And I was v firm that the calories did not alter on a rest day. She still had to eat as many. And because of the exercise she had to eat 3500 a day to gain. Every day regardless of activity.
Even 2 years into recovery she struggles in the off season to do nothing. Even when advised to do so be her club (they only get 4 weeks fully off a year). And she tries to compensate by eating less. Which defeats the point as those 4 weeks are for recovery and growing!
Luckily her club are saying these things too.
When she was underweight she was def doing her training to control her weight and not because she loved it. And I doubted her motives for a long while after she was WR. But I think I had to decide that as an elite athlete DD will have a certain amount of obsession over her training..and luckily she gets planned sessions in her breaks from training to do at home, except for those 4 weeks. Last year she got into trouble for playing a different sport in those weeks and during her at home pre season program. So all that helps back me up.

She was diagnosed with AN with compulsive exercise.
And exercise was def a major issue for a long time.
Athletes are often v obsessive (which is why they do well). But that makes them v susceptible. And of course they are often only a few meals away from losing weight v quickly. I am v wary of any reduction in her eating.
Sorry that's a long winded way of saying that making eating a non negotiable for activity is how we did it. Along with the same cals every day regardless of activity levels. And her recognising that the amount of cals will need to be higher as well.
Otherwise there was no activity.
But then a hell of a lot of violence and aggressive behaviour.