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

I've thought of counselling too,.maybe that would help to make sense of things. We have family therapy through CAMHS, which usually is just DH and I and that is hugely beneficial but perhaps something individual would also be worth thinking about. I'm sure I have PTSD, along with many others on this thread.

@GrannyRoberts I have felt furious at times w the ED which I have to make sure I don't confuse w hating my DD. The amount of hard work we have to put in as families to support our struggling young people takes it's toll. I do actually just mention once in a while my anxiety is high, I'm feeling really flat etc. My reasoning is that DD will see it's okay to share her feelings but I do understand it will also increase her guilt. The dissociation feels like self preservation. In order not to get caught up in every wave of angst DD brings I am definitely a little bit numb. I think exercise, deep breathing and the a few fun nights w my gfs keep me just about coping. I would like counselling too but feels like one more thing I cant squeeze in right now

DH and I are going through a rocky patch - two years since DD’s diagnosis - I am the emotional one, anything to do with DD’s life I can burst into tears - I understand that he is fed up of it, I can’t concentrate and I am irritable. I am seeing a counsellor for the first time this week - I am not sure what I want or what to expect - for those who have experience of counselling and therapy what approach and what has worked for you. My life centres around DD, you know how it can consume all your thoughts - currently DD and DH are not speaking after an argument, they are so bloody stubborn - I always feel stuck in the middle and I am fed up of it. I work full time, maintain the house and have a younger DS to consider - there is nothing left of me. Sorry for the downer but it has been like this for two years when DD became ill.

@GrannyRoberts - I am emotionally completely detached from DD now. I love her and care for her but it is all coming very much from the head, not the heart at the moment :-( . DH has completely checked out of dealing with the ED and anything that comes with it so all meal support, all emotional support etc falls on me and I daily get the brunt of her rage and aggression. Every single day, for a year. I think it's a coping mechanism. It's the only way I can do it. I just live in the hope that one day, we will get back what we had.

Can I ask what family therapy is and how it helps? We are completely broken as a family. DH and I are just fighting, things were already hard with DD1 (complex SN) but the ED has left nothing left that resembles a family. We are two people angry with each and we just try to co-parent and even that isn't working anymore. Wondered if family therapy can help.

@Curlyhairedassasin it's a service provided by CAMHS in our area. We meet weekly with our therapist who is a "specialist family and systemic psychotherapist". I think we've landed on our feet with the particular therapist we have as he has decades of experience working with families and individuals, including setting up the Maudsley treatment programmes. Anyway, the sessions are led by what we need but broadly focus on communication within the family unit, in the context of supporting our DD. It's a space for DH and I to express our fears, frustrations, successes. There is a lot of opportunity to reflect on things that have happened over the past week, and to help us contextualise things. We talk a lot about how we've handled situations, how we've supported each other, and what might be going on behind some of DDs behaviour. It's been a lifeline for us and we really really value the sessions. We feel so lucky to be able to access this on the NHS but for us, we would prioritise paying for sessions if it wasn't available.

https://www.aft.org.uk/page/whatisfamilytherapy
This describes it better than I could!

@Curlyhairedassasin that sounds so hard for you. Did your DH ever help out? We have family therapy weekly with the psychologist and family therapist, it's invaluable for keeping us on track, keeping us on the same page and getting support. I do find it very supportive. It's usually just DH and I. We mostly talk strategy but lately also talk about emotions and how we express them as a family.

@Nomoreplease23 don't be sorry, it's not a downer, if you can't offload here....?!?! I totally hear you when you say there's nothing left of you. It's so important to look after yourself. I'm often thinking, what can I do right now for myself? Sometimes it's just really simple things - get a nice drink, go to the toilet, sing, take some deep breaths. I found a vagus nerve exercise which seems to massively help me calm down, I'll post it. What can you do for yourself?

@Curlyhairedassasin @Nomoreplease23 @ReineDeSaba thanks for your replies and so sorry to hear you've also checked out. It must be self preservation..I too hope that eventually we can get back to where we were but it will take time I'm sure. DH and I are hanging on by a thread. It's been the family therapy, while DD was on the psych ward, and now in the community, that has kept us working as a team and helped us keep a sense of balance and appreciation. I dread to think where we'd be without it.

This is the vagus nerve exercise, it has really helped me feel a bit more normal.

I'm supposed to be going back to work on Friday. I'm really not sure how that's going to go. Work is quite stressful, I get no breaks all day, I have to be quite vigilant a lot of the time and I'm already in a vigilant state, not sure it's a good combination.

@Catsback did anyone reply to you? I can't keep up with all the posts. We're at a crunch point with lunches, DD won't come out to the car. We've had a meeting with school and all they will offer is a room for her to eat in. It won't be supervised, adults and students coming in and out. There's no way she will go.

We're having a meeting this week with school and CAMHS. I'm hoping someone will take responsibility for bringing her to the car, CAMHS have said no lunch means no school. They are adamant on that point.

I've heard of different options - face timing you during lunch ( but most schools have a ban on mobiles), sitting in the staff room with or without a friend.

Are you on the waiting list for an assessment? This is all a lot easier with support.

Eyelashes id agree with Camhs tbh, no lunch no school 🤷‍♀️ sometimes they have to learn the hard way that not eating has consequences.

Granny I felt gaslighted by the ED all the time, dd would blame me for all sorts of things that were clearly not my fault and be horrible to me and then, just like your dd, want my reassurance. I worked really hard at separating what was her and what was the ED and put all the horrible stuff on the ED. In a way that helped me want to fight it even harder as it made me angry that this unseen force had such a grip on her. It also made glimpses of her being nice even more special.

That said dd did see me sobbing a few times and there were times I had to hide in my room because I just couldn't deal with her anymore 😢

@Girliefriendlikespuppies I agree with CAMHS too. The good thing is that my DD is obsessed with school and getting 100% attendance. So it will make her raging angry to set that boundary but it does have to be done. How does anyone work?!?! I'm supposed to be going back this Friday. I think that might be ambitious.

We're also taking a lot of anger and blame. It's not fun. I didn't really understand initially when they talked about separating the ED from your child but I couldn't survive otherwise. She's restoring weight every week (for now) but she's not changing her thought patterns. What does it take to change their thinking!?!

It takes all the weight and usually a bit more and then time and plenty of it.
The brain heals last. And takes a long time about it.
My DD was exactly the same. Hideous to everyone, by turn violently aggressive or with drawn.
She was esp bad with me.
It's hard to be Teflon coated all the time and the insults and fury do take their toll. But remember that being steadfast in your support and love despite the onslaught is what will show them they are worth fighting the ED for.
I lost it a lot and cried in my room and despaired. Mostly in private but not always.
My relationship with DD now is good. It will get better.

@Eyelashesoffire we've got a one off appointment with the ED team today as it happens - hoping that it means we'll get FBT right away, but as it stands they say they have a long waiting list. Absolutely don't want her to miss school over this as she's just started year 10 in a new school, and it's going really well - after a year off school due to autistic burnout / depression. It's the one thing that's keeping her afloat. Do you feel - like me - that missing school would be more detrimental to DDs mental health? Great idea about facetime.

@Catsback oh that does complicate things, I can see why you don't want her to miss school. Hopefully the health centre on site will be able to support you, that is definitely a plus point. I know FBT will say life stops until you eat, but I can see how my DD being with her friends is keeping her afloat. She does have to eat though, that is non negotiable.

Can you work after lunch? Are there any lift shares to school? I suppose if you've had to move schools it's not easy to set up. What are you doing all day in town? The weather is grim now. I love a library, assuming you can't work from there. This illness is shitting all over my life.

@Catsback sorry that was a bit of a random splurge of thoughts!! 😬

One more thought that's churning round my head - who has really been there for you?

For me it's the most surprising people - someone I used to work with has been so lovely, sending messages to check in. I told my parents last week, they've not contacted me since. Friends I've made only a few years ago have sent regular messages checking in, but really old friends (I'm talking 32 years) have not even asked how I am, just sending photos of themselves. I have really been there for these really old friends in their bad times.

I know people say you find out who your friends are in bad times but it's still surprising.

it’s pretty hard to be honest. DD can’t travel on the bus or with anyone else due to anxiety. She wants to in future, but there are just too many challenges at the moment. What am I doing all day in town? Good question ha ha! I am going to a lot of Cafes and doing a lot of knitting sometimes going to the library. It does feel like my life is definitely on hold and I can’t see this state of affairs being sustainable. We are getting and doing a lot of knitting sometimes going to the library. It does feel like my life is definitely on hold and I can’t see this state of affairs being sustainable. We are getting brackets as a family both as a family and for my daughter, absolutely no help. She sees a psychiatrist every six weeks for my daughter, absolutely no help. She sees a psychiatrist every six weeks for her medication review. my friends are good and to check in, but it’s tricky for anyone else to understand how all consuming this is. We definitely need family therapy. This has been going on for two years now. Thank you. X

@Eyelashesoffire I'm so sorry re your parents. I have to keep reminding myself when people are ignorant around DDs condition that I would have been the same. I could never have imagined the shit show behind the scenes till we actually lived it...but it is sad when you can see people don't want to know in a way...it probably makes them fearful thinking about just how grim life can get so they can get a bit dismissive and tell you it will all be fine. I dont think I'm the first person on the thread to say this but this is absolutely v v worst thing I have ever experienced. When you watch your beloved child destroying themselves it's devastating and rocks everything!

Do your DC have totally unreasonable demands? DD is really awful at the moment... she started a big fight this evening about booking a 'proper' holiday. Fortnight in Greece or Spain, nice hotel etc. And then had a massive go that I haven't made such a holiday possible in the past. (I work only part time as I am my other daughter's main carer so money has always been very tight and it's just wayyyy above budget and she knows this). She is now crying, well hollering, in her bed as I wouldn't commit to to a 2 week luxury holiday next year in the Mediterranean (if I could afford I couldn't book it in any case as she doesn't bloody eat). She does this also with other things. I have no idea where this stuff is coming from. Is this some warped ED behaviour?What on earth is that? It is usually totally random non food stuff which is coming out of nowhere without context.

Slowly catching up with messages, sorry to hear of the struggles that this awful illness throws at us.
We've been quite lucky and the handful of people we've told have been regularly checking in and offering support. There are some things I'm not telling them, mainly his behaviour as they have been so shocked at him throwing food, even though they are supportive I worry they judge him. Sounds silly even writing that! We've had another very up and down week, they repeated his ecg and thank god it's normal. He's gained 1.3kg so around 82% wfh, still very low but I feel we might be getting somewhere.
I am also struggling to remain sympathetic, I called him an ungrateful sod this week and said he was putting the whole families lives on hold. Not my finest hour, I've since apologised he understands it's mainly frustration and not just his life stopping but mine has too. I don't know when I last saw my friends (selfish, I know), I fly round the supermarket and back for him, I am constantly prepping or planning food, the clinic are seeing us twice a week due to his low weight so I feel I am also backwards and forwards there, trying to keep things as normal (ha ha ha) as possible for my dd. I'm very lucky in some respects and I can work from home and pick up and stop whenever but I so miss the office.
Hope you all have a more positive week.

@Curlyhairedassasin yes we got unreasonable demands - I read that this is about control, making impossible requests - making the parents the bad guys. DD wanted a dog, cat etc. We couldn’t rationalise with DD so just ignored the demands and they eventually stopped.

Upset this evening, photos cropped up from before DD was diagnosed, she was so thin and yet the GP did not act on our concerns. I wish I had found this thread then, I was so ignorant about eating disorders.

DD has an appt with the gp tomorrow and an appt with an ED dietician in a fortnight. so fingers crossed that this helps us get started with her recovery.

has anyone started meds(anti depressants or similar) for themselves to help get through the turmoil of everything? I’m feeling so helpless and can’t help but blame myself for some of the parenting choices I’ve made that have impacted her. I’d be lying if I said it hadn’t made me suicidal at times(safe currently)

@Cantfindthewordsddstruggling I couldn't read and run - I'm so sorry to hear how difficult it is for you right now. I have absolutely been in a similar place, but for me it was flight - I just wanted to pick up my passport and start again in a completely new country where no one would find me. I started on sertroline and it definitely helped, and I had my own counselling, which helped me put myself first when I needed to, in a "you're only human" kind of way. It stopped me spiralling as much when DD did. I also found HRT patches have made a huge difference. I'm on both still now - low dose of each, but I have no intention of stopping anytime soon. No unwanted side effects from either. It was a game changer for me. I hope things start to improve for you. Be kind to yourself. X