Support thread 9 (!) for parents of young people with an eating disorder

[Girliefriendlikespuppies]

Thought I better start a new thread, can't believe we're on to thread 9 😳

Hope all the regulars find it!

Whippetlovely

In my experience with my dd I'd say those things are pretty normal. My dd wouod stand in front of me and pinch herself and pull her hair out because she ran out of her face wash, her favourite top was in the wash, her straighteners broke etc. It's so awful to witness and yes you tread on eggshells trying to keep them happy. It has eased off a lot as the weight has gone on and she's a lot more rational now and the SH has eased. I'm not saying it's not ASD as it's very common with ED but it could be due to low weight. Something to mention to your therapist maybe. Keep going xx

@BagpussSaggyOldClothCat thank you . my husband says we can’t keep giving into the meltdowns else she won’t learn to cope with life. She did calm down later and sort through her old pencil case and take out what she didn’t really need. It all sounds ridiculous writing this down! But as you know in the moment it’s bloody stressful. It’s like they revert back into a toddler stamping feet ect it’s hard work.
I will mention to the therapist as hitting herself in the head is a new thing. Just got to get on with it I suppose. Ow I’ve just edited this to add that is exactly the same as my dd she gets stressed when her clothes are still in the wash the rational thing is to wear something else but their heads can’t deal with that. It’s quite reassuring to hear it’s part of the illness in a way although it’s horrible but that it can get better when she’s recovered I hope.

whippet - I don't have any experience of autism so can't talk to that (although I do think there is a high incidence of overlap - I read that about 20% of people with AN have autism (full disclosure - can't remember the origin of that figure so may be well off beam...) That said, don't discount the level of irrationality that our children have when this ill - I remember being gobsmacked when Dd asked if calories could travel through air as she was cooking something (this wasn't in the early days but as she was edging towards recovery and she made some bread for her Dad and me)....

I really feel for those who are in the eye of the storm at the moment - or those who may feel like you're being pulled backwards - don't forget that recovery won't always be linear (Snakes and Ladders for the old timers!). However, I did want to pop on to share some positive news.

DD has been in recovery for a little while now and whilst somewhat unorthodox (she's taken up body building) she can eat freely and without anxiety. The body building element means 'freely' doesn't equate to eat anything as she's in training - but we just came back from a week's holiday abroad and she obviously ate 'off plan' and enjoyed it all. Her bodybuilding coach is a medical student and appears to be very clued up on body chemistry.

Whilst eating was okay on holiday, it did reveal how much scaffolding/structure DD has around her on a daily basis (gym training and routine being the primary ones). In retrospect we perhaps didn't think enough about how the lack of scaffolding would impact on her anxiety and focused more on food (I guess because of our deep rooted fear of returning to that awful place). Anyway, we had a good time and lessons learned - she's not ready to address the anxiety yet and we're in a 'managing it' phase but thats okay - she'll get there..

Anyway, on to my positive news... DD was 17 when hit by anorexia and lockdown double whammy and really lost those late teenage years. Despite her and her school's best endeavours she was too unwell to do her A-levels and tried to repeat six form but that was too much for her at the time. It was really hard to see her friends go on to university and the next step in their lives whilst we were held in a wobbly jelly mould.

She's now 20 and has been working p/t (in a 'filler job' - she's grateful for it and it brings money in and fills some of her time but she doesn't love it) whilst doing her gym instructor level 2 course. But this week or so there's definitely been a step change - she's applying for full time jobs in a related health and wellbeing field - jobs that could have interesting progression routes, she's got her first driving lesson this week and her and her boyfriend are planning a big holiday next year and possibly moving in together in a year or so too.

Obvs, being 20 a lot can change but I am really proud of how she is beginning to not only take a bit more charge of her own destiny but be in headspace to be able to think through that destiny (for example she has a plan b if the job she's interested in, doesn't come off).

I was so buoyed up by this community when things were at the most bleak and I do really believe we're a special group of posters offering support and advice and insight and a world weary nod of recognition - so please take my little bit of light at the end of our tunnel as one for all of us!

@myrtleWilson that’s really good to hear thank you. It’s hard sometimes although it’s important but the horror stories are hard to hear my dd is only 11. I’m sad she’s so young to have this but also understand we can turn it around hopefully more quickly as she’s with us most of the time. I hope your dd continues with her recovery and I’m sure she will get a job she enjoys and be so proud as it’s been so much harder for her to get where she is than her peers. X

@myrtle amazing to read this. Always helpful to have a full picture of this illness...how low things can get and how long that can last to the triumphant highs that send us all hope

@whippet I have found it tough watching my 16 year old regress to toddler behaviour. I imagine that without the ED helping them control anxiety they are trying to control everything else. I did think my own daughter displayed ASD traits pre diagnosis but they have escalated during treatment but she is completely resistant to exploring the idea she may be ND for now

Such a lovely update myrtleWilson
It must be amazing to witness your dd embracing life so positively after everything she's been through. It brings much needed hope to us all!

Whippetlovely I see your dh's viewpoint but ED is an awful illness and her brain is affected. Meltdowns are really frightening (so dd has told me) so it's not giving in, it's showing empathy and that you're on their side to do what you can to help. Empathy is bloody hard at times but that's really what she needs to feel safe and protected. Eva Musby is a good source of help here. You also really have to take care of yourself. Meltdowns are exhausting.

anorexiafamily.com/emotional-support-parents-anorexia/

@Whippetlovely my DD showed ASD traits pre ED and these have increased during treatment. The meltdowns started to become more frequent around secondary school age. Apparently, it is not unusual for girls to mask and therefore not be diagnosed. However, when an ED is present diagnosis is not recommended as many of the traits disappear once a healthy weight is restored. Bagpuss gives good advice around empathy but it’s really hard - particularly when you are being calm but are still accused of being hostile - just because you are challenging the illness

@myrtleWilson so pleased to hear such a positive update. You have done such an amazing job and I remember you being a source of calm sense when my DD was at her worst. This thread does feel like a community!
@Whippetlovely as everyone has said its v likely the tantrums are part of her ED and nothing more.
My DD had really bad OCD symptoms during her illness. She had some issues like that when a child but we had help then and they improved. It came back with avengence during the ED.
It all resolved with weight gain. In fact her MH is the best its ever been. Prob she had been slightly underweight for a long time but also I have learnt a lot about how to parent her through the experience of ED. Not claiming I get it right all the time but I have learnt useful strategies.
Reframing and validation are the main 2, along with distress tolerance (still needed at certain times!)

@lotts thank you for your post i'm committing reframing and validation to mind. A large amount of focus on distress tolerance here already

@Lottsbiffandsmudge i need to learn distress tolerance as well as reframing and validation. Do you have any resources you could point me towards or is this something you researched and taught yourself?

FEAST has some good resources about distress tolerance. Here is the video I watched FEAST of Knowledge 2020 - 02 Distress Tolerance - YouTube https://m.youtube.com/watch?v=14XE5QnN3BA and there are also blogs here https://www.feast-ed.org/tag/distress-tolerance/
In terms of validation that kind of comes from distress tolerance. Its about validating feelings but then also providing evidence that the anxiety has been over come before. So for instance DD was anxious about starting sixth form so I just said it's OK to feel nervous that's a usual feeling to experience but remember when you started year 11 and it was tough but you got through it by doing xyz (insert whatever helped!). Or asking her to remember how she got through it. Or sometimes I just say I can see this is hard for you, but I have every confidence you can get through it.
Reframing is just putting a different spin on things. So if say DD is not starting a match she will assume it's because she has not trained well that week. So we reframe by thinking about other possible reasons: she's being used as a super sub, she's worked harder in training so has too many kms on her GPS, etc etc. It's amazingly powerful for negative thinking.
Distress tolerance is a super power. I dropped both DS off at uni this weekend. One was v upset when we left. I didn't cry (unlike my DH who blubbed!) I just said I know it's hard, it's normal to feel sad but I have every confidence you will make a go of this because you've overcome difficult things before..Big hug and left. And it does work. And it doesn't make you an uncaring parent!!!

Brilliant @Lottsbiffandsmudge

BTW I don't get it right all of the time and I still have to remind myself to do these things! It doesn't come naturally at all!!!!!

Coming on for a moan, and some advice. I'm sick of the whole thing. That's mainly it, I'm managing to keep a calm outward sort of approach, but I really wish I could grab hold of ed and look it in the eye and tell it to FUCK OFF. Sorry.

I don't really think i can do this. The constant awful attitude and behaviour from her, the hiding food, avoiding as much as she possibly can. This whole time would be so much easier if she wasn't being so bloody horrible all the time. It's so hard to continue to feel empathy for someone who is constantly unpleasant.

So, advice. Dd is keen to go back to school, and we met with them last week. They said they'd be able to provide meal supervision, or we could look at doing part time initially. Dd is quite distraught at the idea of the mealtime supervision, and I get it, she is worried about looking different to other people and being bullied. Some of this whole thing is triggered by how much she has struggled with the transition to high school and fitting in is important to her.

I've suggested that she starts back part time initially, has snack at school with some kind of supervision, stays for lunch break to hang with her friends and we collect her and bring her home for lunch.

To be honest I'm not really sure if she will manage school ok. But I also think we can't go on keeping her at home indefinitely without giving it a try.

What did other people do?

I'm feeling you, I could of yelled at happy families eating in restaurants this weekend. I've never felt rage like it, I'm so tired, so jealous and just so angry. He has done ok to be fair and I think I'm becoming worried about the weekly weigh in, increasing his portions sizes is so hard as he's fighting back and just refusing and his younger sister gets upset now over meal times and his reaction.
With school I think you can only try, set some boundaries/expectations if she wishes to increase her time there she has to stick to the plan and meals your giving her, she's supervised until she proves she can do it without? It might make her realise what she's missing and help with recovery or it might go wrong but at least you tried. Others may have a different view especially the ones who've been there and done that. If possible try to get an early night, some more energy will help you tackle tomorrow. Sending love

@greydoor , we’re going through it now. Are you under an ED service? They have instructed that DD only attends part time due to her weight, she has a lift pass and isn’t supposed to be exerting herself (although her teacher allegedly told her she still needed to do PE/Dance unless she had a note from us!)

So, what we’re doing atm is mornings in school, we collect and feed her at lunchtime then she only misses one period (but lots of social time). Kind of flying by the seats of our pants, have a review on Wednesday and hopefully will get a handle on what the hell this is, everything very vague apart from she is Too Thin (gah!).

@Glitterfarti no, still on the waiting list, I think it might be a while yet. The social aspect is what she is craving the most I think, but your routine sounds like a practical one - maybe we could aim for that and bring her back for lunch and not miss too much.

@Proseccoismyfriend - totally get you, I'm tired and jealous too. I've never wanted to run a marathon, yet I somehow seem to have signed up for a really crappy one...

After saying I was mainly keeping my cool ive spectacularly blown it. Dd has been gradually leaving more and more 'crumbs' on her plate, and we ended up having a complete shouting match about half a forkful of rice. She was screaming at me to stop just doing stuff to purposefully aggravate her, stomped off and then came back and screamed at me to fuck off, and then I'm ashamed to say I told her to do the same. To my 13 year old 😢😓

I know there is a whole thing about anorexia not being caused by mothers, but I don't think it means me, I think I am the exception to the rule. How the hell to heal this? 😓

Honestly, @greydoor it's ok. Everyone single one of us on here will have a similar story. Once, when we were in the car, I screamed at Dd so hard I made myself hoarse. I've always maintained that occasionally showing that level of unbridled emotion is good. In our car incident, Dd looked visibly shocked at my reaction and it was her not the ED if that makes sense - I'd pricked through the ED force field... of course if the stress is (understandably) getting to anyone of us to the point that this becomes the norm then someone else needs to step in to support you - but as a one off/irregular moment, try not to beat yourself up..

@Lottsbiffandsmudge thank you so much for your super helpful post and examples. We’re dropping our son off at uni next weekend so will use your very positive messaging then. Thank you so much for explaining reframing to me. It is exactly what our children need as they only seem to remember the negatives. My husband thinks it’s a generational thing but I think it is because our kids are super feelers. I am so grateful to you for this information and to all the carers on here who are so generous with their knowledge and experience

Grey I've been exactly where you are now, my dd screamed it was all my fault, she hated me and she wished I'd die when she was 14 😳

I was completely heartbroken but I held onto the belief that this was not my dd talking but the ED desperately trying to get me to back off. Underneath all the screaming (on both sides) are terrified kids and parents, it's normal to lose the plot in these circumstances.

Anorexia is most definitely not your fault.

Lots fab resources. I've read a lot about the parents role in being able to contain their child's big emotions (fear and anger) so the child doesn't become overwhelmed and feels safe. I used to say to my dd 'I know this feels awful, I promise you will not always feel like this' when she was really struggling.

OK guys I feel it maybe time for my garmin watch story...
In common with many AN sufferers DD wore a watch that tracked her exercise. We thought it would help. Along with many other things 'we thought would help' such as including her in cooking, allowing her to bake constantly, allowing choice of meals, taking her shopping to choose snacks etc etc...all the things well meaning people tell you will help but are exactly the wrong things to do, which you only realise after you finally get clued up and join this forum...
Any way in the thick of post diagnosis when the ED was at its height my DH suggested a family walk to 'ease tensions' (ie give into the ED- he was never any good at distress tolerance) on DDs rest day.
She spent the entire walk checking the blasted watch and extending our route.
When we got home she had a full on tantrum about how little distance we had walked and at such a slow speed because she was with me (slow and fat- her actual words).
I spectacularly lost it and demanded the watch, she refused. I manhandled her to the floor, wrenched it off her wrist, non too gently, and smashed it into pieces with a hammer in front of her.
Not my finest hour
DD was inconsolable for hours and would not eat for rest of the day.
However smashing that watch was the best thing I ever did. Those devices are a curse.
3 years on and she cannot even remember the incident.
These things happen. Just forgive yourself, apologise, and go again.

@lotts I feel like yelling 'no I'm Spartacus ' in response to Garmin gate...we all share a common and excruciating experience on this thread and we all deserve as much compassion as we strive to offer our young people. We are just doing our best with in our own particular sets of circumstances.

@Lottsbiffandsmudge and @myrtleWilson thank you for sharing those stories. I'm sure we all identify and it really helps knowing I'm not the only one that loses it sometimes!