Things I can't say out loud...

[istudiedaculptureatstmartinscollege]

Either because rationally I know they aren't true, or because my friends won't understand, or because my husband will actually agree with me and then I'll have to leap to defend her...

...but if I don't say them somewhere I feel like I will implode.

In the moments where glimpses of my old daughter shines through the ED...I sometimes feel furious, as if she has a choice & can just switch it on & off. I feel angry with her.

I feel smothered by her - she is all consuming. I feel like I have to carry her mood. Constantly cheerlead, encourage, find motivation.

I want my husband to be as present as I feel I need to be. I want him to just get it. I want her to need him as much as she needs me.

It's like having newborn all over again. Planning & working around feeds. I miss my freedom.

Sorry. This makes me sound horrible. I just need to get it out of my head so I can carry on.

I’m out the other side of this now but all your feelings are completely valid and I felt the same.

For four years in between the feeds I had twenty minute slots to see a friend, do a bit of gardening, something to keep me sane but always back to get the food organised.

While my husband wasn’t happy that it was all down to me, my daughter felt food was easier to manage with me by her side, so that’s how it was.

And describing it as feeds rather than food always made me feel like I was talking about a pet rather that my lovely daughter.

All completely exhausting and you are well within your rights to have a massive rant about it all.

Good luck, I never thought we would get through it, hold on, I hope you get there in the end. It’s so worth it x

Sitting here on our 14th night in hospital cause there are no beds available in ED Unit I needed to read this!!!I am exhausted. So worried for and angry at my girl, I feel like she can do it better and think of the rest of us!but then come back to reality and know she is battling an awful disease and never asked for it. I tell her all the time how much I love her but she continues to say she hates me cause I feed her and I haven't had a hug or kiss in well over a year from her, that nearly kills me. She is so beautiful but this is destroying us. My son is being neglected at her worst times and I am so worried about him too. My husband tries so hard but doesn't have the patience to talk calmly for hours about what she'll eat and ends up getting cross at her. She hates when I leave the hospital for any reason cause I know she trusts me to allow her anxiety about food to be spoken about and we just muddle.through. oh how I wish our little family could go back to how happy it was😩 hopefully you'll get through it, and thanks for starting thread, I desperately needed ro offload!

My heart goes out to you. Parenting a 22 year old with bulimia. Tired of having to find ways to distract, limiting finances and access to money, going for walks with him (long walks) to enable him to eat without making himself sick. Tired of feeling so alone with this and so responsible for every time he has a bad day, Tired of professionals with the attitude that if his weight is reasonable, there is not a problem.

Yet, like Dugs2010, I know this is something that is not completely in my son's control, and he speaks to me openly about his feelings.

This is a much needed thread.

You all sound like wonderful resilient parents. I know how incredibly unforgiving & relentless this is. You have my full admiration.

I started this thread on Jan 7th, and we were back in hospital on the 8th. Home again now & she is compliant as long as she has undivided support & attention.

DH & I agreed on a trial separation this morning. The divide in our responsibilities exposed way more cracks in our relationship than we can cope with right now. Right now I'm really struggling with how much I resent him for being so unneeded and free. And yet he still wants/needs attention for the most trivial of things. It's an ask too far for me right now.

Things I can't say out loud right now: I feel as relieved as I do sad.

It might help to read or listen to 'The opposite of butterfly hunting', by Evanna Lynch (Luna Lovegood in Harry Potter.)
She writes about having an eating disorder from a young age and it's a great insight.

This was my life too for a long time. I used to wish I knew how long it would go on for (and how much more I had to take) but in the end I’m glad I didn’t know.
That mismatch between illness and choice is a killer isn’t it? The only person who can get better is the ill person. You can support, however that looks (and I was better some days than others) and you and the team behind the professionals involved can work really hard: but ultimately the only person who can recover is the person who is ill, and who has an illness that prevents that insight.
I thought, for a long time, that my DD would die. She is over 30 now. She is living a full life. Hang in there. And keep venting to people who get it, it’s so important to know you aren’t alone.

@istudiedaculptureatstmartinscollege in another of those ED dichotomies, it isn’t done for attention (as many ignorant people say, even in this day and age). I know that. I understand that. And yet, it is a powerful way of having that sole attention. My younger child was largely left to get on with it whilst I managed the older one. It was far from ideal. But then I needed to do what I could to keep my child alive. And with hindsight, damaging as it was, I’d make the same choices again.

For me too. This is exhausting - I so identify with it. My 25 year old son is experiencing bulimia. Supporting him is tiring, all consuming, disheartening when we have setbacks but rewarding when he's doing well. Never thought this would happen. He's very open about it and it's only been just under a year. Long drives in the car has helped and trying to keep everything calm to lessen anxiety. My anxiety has been the worse part of this I think and I've received support for this which has helped more than anything else. Still an endless cycle of ensuring food stocks are healthy, limited and cooking every night, gradually introducing different things. Thanks for sharing this - there must be many more of us out there who need support.

After 29 nights in hospital (with me staying and being on unpaid leave) my daughter got into an inpatient clinic last week. And what i really can't say out loud is that the 3 of us left at home are having the most relaxing time!!!the calmness and carefree feeling over us all is frightening. We miss our little girl desperately, the emptiness she's left is awful but the anorexia out of the house is WONDERFUL!! We went out for 7 full hours on Sunday, no idea what we were going to have for lunch or dinner, no stopping every 2.5hrs for snacks and arguments/crying/trying to bring it all back to normal for another while. We have time in the evenings to ourselves, we're relaxed. Do we want her back???most definitely but we are all already dreading the anorexia coming back with her to destroy our lives. Cannot say this to anyone bar my husband, how could they understand but it's like respite to us. She's nearly 2 hrs away from home and we've been to visit 4 times already but we are not exhausted or drained, like we are while being imprisoned in our own house with this awful disease.

This thread has taken my breath away and made me blink back a few tears. I have no experience in the world of EDs but reading all of your words has really moved me. There's nothing like a mother's love, your children are very lucky to have you 💐

@Dugs2010 oh my goodness yes, I hear you. The joys of just….eating if you feel like it. No rows over what and how much. No standing looking at the calories on fat free yogurt in the supermarket. We ate beans out of a tin. And yes, felt terrible. But liberated at the same time. And also yes very much wanted DD home but didn’t miss the anorexia. I wish you the best.

I'm an ED mum. DD20 was diagnosed with bulimia at 15 then also anorexia at 17.

Her school friend told her "a really cool way to lose weight for the summer". She went on to stop purging while my DD got hooked. Things I can't say out loud....thanks a bunch for that. (I know it's not this girl's fault but I still hold that resentment deep inside. I know that's wrong though).

My DD was hospitalised for 8 weeks and I hate to say it but she was able to pick up tips from others. Able to purge in another patient's toilet while that patient "kept watch". I begged them to assess my DD for capacity to see whether they could section her because I knew she'd discharge herself. They refused. How can someone who would rather die than put on 1lb be thinking rationally? DD discharged herself and I could do nothing about it because she was over 16 and deemed an adult in the eyes of the NHS.
Things I can't say out loud....Fuck you all.

DD has been living on peppermint tea and sugar free Monster exclusively for the last 3 days. Nothing else has passed her lips. She actually approached the GP a few weeks ago to re-refer herself and is in the assessment process. Waiting on bloods coming back to hear if the MH and ED teams will take her on again.

I'm mentally and emotionally exhausted and broken. These EDs have destroyed the relationship we used to have.

Nobody understands unless they've been through it. My DD is obsessed with buying but not opening biscuits, cakes, chocolate, any old shite. Especially if it's novelty. Packs and packs of unopened Halloween themed chocolate etc. Xmas themed biscuits. I honestly think she'll attack me if I were to throw it out.

When she was first referred to the ED team at 15 I remember the therapist telling me it'll be the hardest thing I'll ever go through. One of her patients at the time had a younger brother who had survived cancer. Apparently the mum said that supporting the girls ED was harder than the son's cancer. (Please don't flame me... I'm just repeating what I was told, 2nd hand).

My DD isn't allowed to drive. Travel insurance costs are through the roof. She can't study because she can't concentrate, so withdrew from her course. Works part time and has no energy to do much in between. Doesn't want a relationship as she can't concentrate on anything but food. Struggles to find clothes that fit. Rarely goes out with friends because it centres around meals, or drinks which all have calories. Too tired to sit through a film at the cinema. Too tired to do an activity like bowling. All she talks about is food and is obsessed with what I eat. She knows everything I have eaten even if she's not there to witness it. I'm not allowed to eat with her in the room. Her hair isn't growing and it's snapping. She's always freezing so the heating is ALWAYS on. It's costing a fortune but I have no choice. It's crippling me financially. She's constantly boiling the kettle for her hot water bottle. If it starts to cool down she'll boil another one. Constantly reheating her mint tea in the microwave because she sips at it like a little bird.

She restricts SO much. She doesn't necessarily binge but most of the time she does decide to eat she will then purge.

I don't know what I can do to help her anymore. I'm sick of arguing with her so I just don't anymore because it was affecting my own MH so much. Still does.

I don't even know what to write anymore but I'm so sad for the life she could have had at this age

And yes to the constant need for cheerleading/sympathy. My mood has to match her mood otherwise I'm the absolute devil in her eyes. I have to be available at any time of the night or day when she wants to talk about things.

I know I sound very selfish here. I hope nobody judges me too harshly but I don't like my "ED DD". I want my actual DD back

I hear you OP. My DD is in hospital at the moment, in a MH unit not ED, and instead of finally having some free time from not having to serve her meals, I find I'm using just as much time and stress to try and still manage her meals, but from home! So I call her, prompt her to eat, transfer money to go to the cafe, remind her to use the money, ask what she's eaten, suggest food she can buy, research what other food places are nearby that she can walk to, and then every 2nd day i buy her favourite takeaway and drive it in to her, trying to work out in my head how many meals she might get out of it, does it keep the next day, but bearing in mind the nurses clean out the fridge every 24 hours. Also traipsing the supermarket to find snacks she can keep in her room for when she feels like eating. Then stressing about her weigh ins, praying she's not lost weight (she lost weight the first week because she won't eat hospital food! Undoing all my bloody hard work!!).

@90sdesires @wandawaves
i hear you also. I just want to say: after many years and therapy, I understood I couldn’t do it for her. And her illness wasn’t my fault. I started to do it differently, to protect myself and the rest of the family, and I took a step back, forcing her to take responsibility for her choices. I refused to enable her. It was awful. But: I couldn’t put food in her mouth and make her swallow, nor tie her to a chair to stop her exercising. So I couldn’t change her, but I could change what I did. It was the start of recovery (a long recovery, still some issues, but it definitely resulted in change).

I hear you too op. What I can never say out loud is that I have lost my job, my freedom and my mental health because of this bloody illness, and I am devastated about that. Especially when DD doesn't even consider the affect on the rest of us.

Is your daughter OK now Theoscargoesto? I am considering doing this (stepping back a bit) as I can't see a way forward atm. It would be so helpful to hear stories of recovery from others whose DC have been going through this.

@Lunabes hi. What a good question! Now aged 32, my DD remains anxious (she devoted most of her 20ies to researching eating disorders-anorexia in particular-and the signs increasingly suggest that anxiety plays a big part in the illness). However she is largely recovered. It’s taken a while but she, with the support of a new relationship, now has regular periods and wants the sort of life a lot of young people want-relationship, children, not to have people thinking you’re odd. Her eating habits are controlled to some extent, but even now this is improving. Her need to exercise (another aspect of research: desire versus compulsion, in eating, checking behaviour, and exercising) is much more controlled. You wouldn’t know she had had anorexia now. It’s taken time but I reckon she has managed it, as opposed to it managing her, for more than 5 years.

It feels a risky thing to do, to stand back. What if she doesn’t eat/binges more…..all those things, as a parent or carer, one dreads. But. You can’t do it for her. It took me standing back for my DD to
see SHE needed to change. Best of luck. I say only what a wise person said to me at the time, if nothing changes, nothing changes.

I go back to these threads when I'm broken and today that's how I feel. DS has had 3.5 weeks of not purging then it started again, once after feeling slighted by sibling (he said) and then later too for no reason. Talking about it he broke down - says it's so unfair he has this condition, so unfair that his sibling is fine, - wants to get healthy but the ED rules. Sick and tired of watching him struggle every singe day/no work/study (he can't do it atm - wants to, but he says he need to be healthy first (means achieve desired weight BMI 20.8 (he's by no means overweight atm - is very slim). No regular sleeping/waking habits - we're all tired as a result.

I am trying to take a step away but at the same time need to reinforce boundaries so we can all have some semblance of normal family life without staying awake all night wondering/worrying what time he's coming in from his walk/drive (4.30 am and 6.30 am recently) and sibling needs to get up early every day to go to work. When he broke down a few nights ago he cried a lot and let me hug him - he was so upset and sick of having this condition, despite really trying hard to overcome it. He wants to get away on his own and have a break without the pressure of living with family considerations, actually said he'd like to talk to others with the condition - mentioned the stigma of men having therapy and the shame of bulimia - would go somewhere for support but where? Won't go back to the GP and ask for more support. Won't engage with therapy after one bad experience. We all love him so much but I just don't know what to do anymore today. Maybe just having a bad day - Feeling broken.

I’m so sorry @Lunabes. You sound exhausted and overwhelmed, and whilst that is normal, I think, given the awful circumstances, it’s still difficult to cope with!

For me, it’s been important to know I tried everything-and it sounds like you have truly tried everything. I am sure you are scared that going away, space etc is just shorthand for the ED, which is in control, saying, leave me be. It’s hard to know what is child and what is ED, isn’t it?

I read what you say and reflect on the difference between what the sufferer says and what they do. Want help, won’t see GP for example. I wonder if there are local private groups (in my area we have Freed Beeches) that could support and then I think: if you knew of any you would have accessed them. Hang on in there. Things do change.

I echo all the pain, desperation and anger that you are all feeling. Supporting my daughter with AN for 5yrs as a single parent is changing me as a person. I have no life, home is a sad, angry place with no end in sight. I can't say it to anyone because she needs me to be endlessly positive and it sounds selfish but I'm so done with it. And I feel like a shadow of my former self and I'm not even the one who is ill! Its nice to have a group who gets it