Support thread (8)for parents of young people with an eating disorder

[myrtleWilson]

Welcome to anyone who is a parent/carer of a young person who has (or suspects may have) an eating disorder.

We're experts by experience and will share our insight - but obviously we're not medically endorsed, we celebrate all our small wins and provide a space for relief from the intensity of supporting a young person whether pre teen, teen or young adult with any eating disorder

bagpuss I am a bit of an DLA form expert thanks to DD1.... loads of chocolate and vino needed to get through. Currently, DD2 needs more help during the day than dd1 but I wasn't sure if they award for anorexia at all. I will try my act together and sort out the form. It will be about 3-6 months until a decision anyways and if DD is not better and we are rejected, I guess I could fight it from there. But not too hopeful given our experience with my other DD.

@BagpussSaggyOldClothCat - You may well already know this, but your DD has to give permission for you to act as her agent: she needs to be by the phone and agree to this orally. It took me a while to get my DD to agree, as she thought there was nothing wrong with her 🙄. It is quite a while from application to payment, but your claim will be backdated to your first phone call. Also your DD may be invited to have an interview to assess the claim. Again, (iirc), I needed to get a letter from DD's team to say that answering the questions would make her anxious and she needed a parent present as support. In the end, I did 90% of the talking. The lady was very nice.

Thanks, Nan. I could probably talk dd into agreeing for me to do it for her over the phone. The poor girl struggles with so much in her daily life, not just food. Crippling socal anxiety and dysmorphia that make it difficult for her to leave the house. We tiptoe around her SH issues and the only mention of it is when I request to do a room check and have to check the parcels that she has delivered. If an interview was requested talking to a stranger about all that would be very difficult.
I can see why people say filling out the forms and describing their illness and limitations is emotionally draining.
It should be made easier for MH sufferers but I guess it would be more open to fraud.

bagpuss, you need to become her 'appointee' for PIP. Here is some more info on the process. I have loads of friends who are appointees for their high functioning children. So I don't imagine it that hard. I will have to sort it for DD1 soon when we switch over but she has no mental capacity. https://www.gov.uk/become-appointee-for-someone-claiming-benefits

Sorry Curly, I thought I had replied. Thank you for your help x

I hope everyone is OK and enjoying the weather? I'm not at all as I have horrendous hayfever and also have the delights of perimenopause overheating. I've put on weight as my summer clothes feel very tight (no scales so no idea how much) and I'm really feeling it in the heat. I've never been that slim but always hovered around a size 12 and been happy with that. I really need to shift it but can't have too much fruit or salad or anything low fat in the house. I'll have to try and have smaller portions without dd noticing! Anyone else put on weight due to their dc's illness?

Ha ha Curly, that's me and DH. Caitlin Moran is very funny on the subject of eating high calorie food in an attempt to show her dd that was safe.

Me too! It’s so depressing but DD compares the size of our meals all the time and always wants me to have a snack when she does!!

DD has been signed off school again and is devastated. She’s gone down to 75% WFH. She’s saying if she can’t go back next Monday (weigh in every Friday), she’s going to give up because it will be too embarrassing to go back to school. She moved schools in January as didn’t want to back to her old school after 3 months off. She’s made some nice new friends but hasn’t told them about her ED (although I’m sure they have guessed, she’s 15 and can’t eat when out with them!!). Anyone else faced this? We’re trying to stay positive.

@BlueDeer as well as my dd having an ed, I am recovering from one myself as a teenager.
When I was diagnosed, I moved schools. It meant I had to navigate recovery with children and teachers who did not know me and had no family links - my siblings were at different schools. With my own daughter, staying at the same school means she is with teachers who have known her for years, and children she has known her whole life. It can feel uncomfortable at times, but on balance it's better. Not sure if that helps but it's some thoughts to talk around.

@SunnyFog thanks for the insight. It’s true, at her old school she had good friends from primary school who she has stayed in contact with and are really supportive. Her new school is huge and I think she liked the idea of being anonymous and starting afresh but now she’s stuck as she doesn’t want her new friends to think bad about her. Tricky to navigate.

Can I just offload a minor moan please - tiny violins needed as in the grand scheme of things it's nothing but it did give me a fuck you anorexia moment..
We live in a small city with a big university and the last two days have been open days so it's been swarming with 16/17yr olds and their parents (hopefully) enjoying the city in the sun and getting excited about university - it always makes me happy to see them and yet today -randomly- I had a pang of "we never got that time, anorexia stole that from us" and I know, I really do know that not going to Uni isn't worst thing ever (and who knows without an ED she may have gone and hated it anyway) and I know she'll find her own new path in the world but still today am annoyed those trips and visits and excited planning for new adventures and becoming an adult we're taken from us - GRRRR!!!!

Myrtle, I get you. It's like a punch to the stomach when I'm reminded what dd is missing out on and what we are missing out on doing with her. I wouldn't wish this life on anyone but it's a comfort to know others are having the same feelings.
Yes they will forge their own path, it might be later than their peers but that's OK.

More than just feelings... One of the persistent myths about anorexia in particular is that it is caused by pushy parents. When an ed patient mentions academic goals like studying medicine, playing in a professional orchestra, or qualifying as a scientist, they often get dismissed by staff who aren't necessarily qualified therapists. You can lose your identity. It might have been completely realistic, and an incentive to get well. Sorry, not making sense.

Yeah, when I see her old friends doing lots of things I feel a bit resentful.....

@myrtleWilson I totally hear you! All my DDs peers are doing uni visits and filling out UCAS forms, and she's calling from the unit distraught that there was mayo on her sandwich. Anorexia makes their worlds so small.

It’s so hard, I do believe that they will pick up their lives again - just later and different than their peers.

DD has sat her GCSE’s and was mentally unable to put much effort in, we shall see what results she achieves - I am proud she did them, I was expecting some refusals, however it doesn’t sound like she has done well. She wants to go to sixth form college (if she gets in I am then dreading this as lunchtimes won’t be monitored unlike at school) - I don’t know what, if anything, I can do to make sure the food goes in when she is there at lunch times.

I am resigned that they will forge their own paths and the traditional routes may not be the best for them, but it is hard to see their friends seemingly happy and achieving, as was DD before this awful illness grabbed hold of her.

Facebook 'memories' give me a sucker punch on a daily basis. Smiling dd on days out and holidays often having lovely meals somewhere. Cuddling up with us and grandparents. Videos of her dance shows. Long gone friends. Her beautiful make up free face.

I don't have any photos of dd at all since Christmas 2021, she won't allow it, and I can't remember the last time I saw her without her heavy mask of make up.

It's a wicked illness.

Bagpuss I gained around 10kgs feeding dd! In the early days I ate what she ate including the calorie laden puddings and snacks so the weight went on then. I went from a size 12 to a 14, I've kind of made peace with it now. I can't stress about weight gain while at the same time tell dd to be body confident and that all sizes are beautiful.

That said I'm glad the days of having to eat exactly what dd eats have gone!

Yy Myrtle I know what you mean and looking at fb pics taken pre ED. Everything now has a tint of sadness attached as the ED is always there lingering like a bad smell.

Dd hasn't applied to uni, she's undecided if she wants to go and i personally feel she's not ready yet so am not pushing it.

I went to uni a year late, and I felt too young and shy - literally unable to speak for the first year. But that was partly due to hospital banning me from studying so I had to catch up on so much.
I was at a university where there were a lot of mature students, and I felt that it would in some ways have been better if I worked for a few years and went to uni at 22 or 23 - young enough to party, but more recovered from the ed. Other students there were living with parents and that also seemed like a good approach.
With DD I take the approach that her studies shouldn't suffer. So even if she hasn't eaten well, I coax her to study. With uni, we have been looking local, and not ruling out apprenticeship pathway.

Sorry to plop in like this (have been reading but not contributing much) but I just realised that DD14 gave herself (and her also AN best friend) tattoos yesterday. Wtf?

She had a kit which I saw but had been getting into glitter tattoos and she told me they were temporary which I believed. Anyway she came back and I saw what looked like a very real tattoo on her wrist.

I looked at the kit and it's a poke and stick kit - she's still adamant it will disappear but everything I've read is that they are permanent? Plus there is a massive needle in it which with her SH is a real concern. So I've obviously confiscated the kit and will now have to check her Amazon account whenever she buys something (she has a GoHenry card so at least I can see when she's bought something).

I was actually feeling positive yesterday as she was seeing friends (a few of them got together) as she's been quite distant from them and not socialising recently. Feel like an even worse parent than normal 😭

@LittlePickleHead You are NOT a bad parent. The fact that you are on here and doing everything you can to help your DD shows that. It's this bloody awful illness, making them do things they'd never ordinarily think of. Apparently poke and stick can be removed by laser. What's the tattoo?

It's a small heat outline, so thankfully nothing awful. She's told me it will fade to nothing in a few weeks so we'll see...

I really want to trust her and for her to have freedom but I know I can't and I'm so exhausted by it.

*heart

@LittlePickleHead Could be a lot worse! As an aside, I once volunteered at a street drinkers project and there was a fella there who had the C word tattooed on his forehead....

LittlePickleHead You are absolutely a bad parent. Teens are susceptible to doing stupid things, it goes with the territory. Hopfully it will fade in time. As nan said, there are a LOT worse things she could have done. My friend's 14 year old son backed her car off the driveway straight into a neighbours parked car..

I have to check all dd's parcels as she has ordered laxatives in the past but it's not foolproof and I'm sure she'd find a way to get some if she really wanted to.

I'm glad your dd has been able to socialise. That's really great. I'd let the other parents know about the tattoo kits in case others are buying them.

I think @BagpussSaggyOldClothCat means you are not