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!

Well, that was a car crash. The consultant's Teams wasn't working, so we switched to Zoom and then my mic wasn't working, so had to type to DH via WhatsApp so he could contribute. The professionals all decided to that compulsory meds would make DD less likely to co-operate, and she's clearly unhappy, so, instear, they are looking at a discharge date of 1 Nov, assuming home leave goes well. Perhaps under a CTO, but they recognized they were hard to enforce as there aren't any available beds. Oh, and will reduce weight target to resumption of menstruation, plus 2kg FFS

oh @NanFlanders . I am so sorry. I wish I had something more useful to say.

Do you currently get home leave? I thought that was on hold due to her absconding? What happens if the home leave doesn't work? Is there a plan B already in place?

@NanFlanders its hard to imagine how they possibly think that's going to work given what you've described on here. I'm flabbergasted. I take it you were not on board with this decision? I'm so sorry, your situation just sounds unbelievably difficult.

Oh god Nan that's a terrible plan. Surely it's not safe for her to be at home considering her history? I'll be a huge strain on you and the rest of the family to try and keep her safe and well. Meds are incredibly helpful for the majority so it's disappointing when they don't want them. My dd hasn't been anywhere near as ill as yours but it still took a few months to convince that meds would help her feel better and she now realises they actually do. My heart goes out to you x

Oh Nan you must be terrified and bewildered. I'm desperately trying to think of something practical to help but I know you'll have gone over everything... if you started a go fund me to get support for a private service I'd contribute and promote the shit out of it. I do know a CEO of a regional ED charity here in the NE and I could ask her if she had any pointers or connections

How disappointingLook at that date as being a long time in the future and something for her to aim for - I assume she wasn't in this meeting?
Did you ask for meds?

Thanks all - I knew you'd understand! @Curlyhairedassasin No, DD doesn't currently get home leave. In fact, she doesn't even currently get leave in the grounds with staff, due to compulsive pacing. And the consultant has been talking about reducing the time she is allowed in her room because they suspect her of exercising in there. @GrannyRoberts /@NCTDN - No, not on board, but because of the connection failure, I had to rely on DH. He said he'd trust their professional expertise (as that's been so bloody brilliant to date!). I WhatsApped him and he did convey that I was supporting meds, but my frantic typing in the chat was probably not as compelling as what I'd have said. @BagpussSaggyOldClothCat I know. In fact, DD's longest time outside hospital (about 3 months I think) was when she was taking meds. Then she was weighed on some different scales and registered a 1.5 kg gain so stopped taking them cold turkey and has refused ever since. @myrtleWilson Bless you. I teared up when I read your kind offer. DD does actually have a place in a private hospital that ls funded by the NHS. If you are talking to your friend though (and please don't make a special call) any and all ideas welcome.

@NanFlanders
Reading @BagpussSaggyOldClothCat post, I wondered if someone in recovery could talk to your DD. Maybe a peer would have more luck in getting through to her.

Does anyone else's ED child rewrite their past? I've had some bonkers conversations with dd where she says she had a boring childhood was boring and her friends all had better childhoods. It couldn't be further from the truth. We had some brilliant times and at the time she was really happy. The only thing I'm guilty of and still plays on my mind is that I'm introverted and hated play dates, sleepovers etc and dd was always nagging for more. I did them as much as I could manage and she certainly had loads of fun when we did do things.

I'm wondering if she's so miserable now she's trying to create a childhood to match it? Or could her memories actually be damaged from the severe weight loss? Or maybe it's a common teen thing and she'll grow out of it?

bagpuss My DD is a bit younger than yours (12, almost 13) and they sound so similar with many things you post. We also get the everything her life her life is/was always shit and substandard and all her friends have/had it so much better. this all is absolutely not true! It's as if she is living in a parallel universe. I think she is depressed though which is probably affecting her perception of the world.

@BagpussSaggyOldClothCat my DD has episodes of tinfoil hat beliefs so I take this bit around where I 'went wrong' w a big pinch of salt. Luckily she has a sibling who feels the complete opposite...I suspect my parenting, like everyone elses is somewhere in the middle. Her new narrative is that she had to raise herself which I am finding quite hurtful as this was my own childhood story and I was home alot with her. As other DD said I offered autonomy with support but different children have different sensitivities.I can only do and keep doing my best. It's not really within the grasp of most teens to examine their own part especially w a starved brain.

I'm having a day where it's just all feeling too much. How do you get yourselves through this? On our last day of holiday which in balance has been good but marred by DD's rigid eating, body issues (meaning not doing a lot of stuff she loves like paddleboarding) and I've still found evidence of purging and food hiding despite trying to be vigilant.

I'm sat on a bench with a beautiful view in front of me just crying. How do you get the energy to keep going? I just don't want to go back to my life

@BagpussSaggyOldClothCat - Yes, yes, yes! DD insists she didn't have any friends, and was a social outcast. She had a lovely group of friends - many have understandably fallen by the wayside given her long absence, but when she was first hospitalised, she was inundated with cards and presents. She was voted class president for crying out loud.

LittlePickleHead

It's so hard to find joy when you have such an ill child. I hate crying and feel dreadful when the tears come but it does help to feel the emotion and get it out. Practically I have my kindle on me at all times and find uplifting books a great distraction. I also watch a lot of true crime and thriller type shows where the characters are having an even shitter time than me and that makes me feel better. Walking alone also helps, generally early in the mornings. It gives me a boost that helps the day feel better. Take each day as it comes and try to find the good bits in each day, however small. I've also given up alcohol and am trying to cut down on social media. And early nights!
Sending you love x

So sorry about your how bad you are feeling. It is utterly draining and feels even more like a slap in the face when you are away and unable to appreciate it.I need to get some time completely myself when I feel that low but then I start to make plans to see more people even though nothing feels harder. For me being in a bubble of the ED starts to drive me mad and I need other people to distract me even though I'd rather just hide away

Oh it's quite a common thing then for them to look back and see doom and gloom instead of the reality.

Dd has had the childhood I wanted.
I think most kids in the 70s and 80s were neglected to some extent compared to today. Both my parents smoked and drank heavily and fought a lot. l was always being left with a friend or a neighbour they barely knew or even just left home alone at a young age. In the 70's there were the power cuts and I was terrified. There were so many incidences of not having proper school uniform or it was dirty or I didn't have what I needed for school projects etc so I got into trouble at school.

I was determined to always make sure dd never felt neglected or uncared for and always had everything she needed so it stings a lot when she says the things she does.

I meant to mention exercise too @LittlePickleHead The 'girls' in my little group all have teens too so I feel like we're all in a rocky boat together. I'm in for the coffee afterwards rather than the exercise (which of course upsets DD who is allowed to v little physical stuff right now)

@BagpussSaggyOldClothCat at FT yesterday we were doing family tree and DD started crying. As I was talking about my mum dying when I was a child the nice therapist thought DD was upset by it but I knew better...it was about earlier chat around the Plan. Empathy is not a feature of DDs ED for sure...

ReineDeSaba

Dd is the same. She was very loving and affectionate before she lost weight and I miss that part of her. The lack of empathy is just another delightful part of this illness 😔
It takes so much from them/us.

The lack of empathy is just another delightful part of this illness

I agree. It is really upsetting to see on how many layers it affects DD. Empathy is now nonexistent. I just thought it was DD. is that typical for AN?

I always thought the lack of empathy was more an ASD characteristic than ED - exacerbated in teens???

@Shanghai101 for me it's about when the change in empathy happened. I definitely wouldn't be floored if DD got an ASD diagnosis (or myself to be honest) However as well as her refusing to entertain an ASD might apply to her it did seem to manifest directly in line with her AN. Of course it could just be exacerbated by her age as you mention, just so hard to unpick it all.

So difficult. For us, social anxiety got much worse around 14/15 yrs. then the meltdowns disappeared around 18, which coincidentally coincided with restricting - we thought she had grown out of them. They have returned with a vengeance during treatment.

Have fallen off the thread a bit as this week has been really busy.

Nan thank you, I did roll my eyes at how that group has made it so difficult for struggling parents to join, it's shit like that that made me leave the group! My dds friend has seemingly turned a corner after a short stint in hospital so I'll leave it for now but will pm you for a link if things go backwards.

Dd didn't take the news of her friend being diagnosed with anorexia very well which wasn't a surprise tbh. She won't talk about it now and sadly I think will keep her distance from her friend as it's just too triggering for her.

I'm sorry your meeting was such a shitshow, it's absolutely disgusting that turning 18 means no more inpatient treatment which is clearly what your dd still needs.

Welcome to any newbies, this is a lovely, supportive corner of mn which definitely makes some of the dark times of navigating young people with EDs a little bit easier.

Dd is still doing okay, although I'm not sure if that's because I haven't really spent a lot of time with her! She's working a lot and likes having the extra money so between that and being out with her boyfriend she's pretty busy. Her mood seems good though and she's eats well when I'm with her.

Heads up for anyone thinking of watching Heartstopper on Netflix, one of the main characters has an ED and faints in one episode. I watched with dd and we both rolled our eyes at some of the stereotypes, the main character saying it's all he has to control etc. It was an opportunity for me to rant about the fact EDs control the sufferer not the other way round though 🙈😂 some of you might want to avoid if you're still in the midst of it.

And yy to the lack of empathy, my dd (also suspect ASC) was overly empathetic before the ED, she couldn't see anyone upset without getting upset herself. When she was really unwell I honestly don't think she'd cared if I had dropped down dead in front of her, in fact she'd have probably been relieved that I couldn't make her eat any more!!

She was absolutely vile to her grandparents, my ddad had major heart surgery and was in itu and she didn't care.

It was heartbreaking 💔

Thankfully that got better with weight gain and for the most part my lovely, caring girl is back.