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

Thanks @NanFlanders - DD autism traits include the feeling of being 'born in the wrong body' (this phrase picked up from an LGBT group visiting her school) and she has sensory issues around tight clothing. These two traits are likely due to body dysmorphia and self-loathing common to most AN sufferers. An autism diagnosis may help her understand her feelings although at 17 she would have to agree to the test and I'm not sure if she would as she is so stubborn.

@Nomoreplease23 - You / your DD might find this lecture interesting: . It was my DD to a T. I'd watch it yourself first though, as you'll know what might trigger your daughter (There are reference to girls restricting as 'thin is popular' another reference to BMI - no numbers)

I'll watch that later @NanFlanders after work thanks. Won't show DD, she does not talk about her ED, and tbh neither do I with her - she says that she had an ED but says that is behind her, I wish it was that easy.

@Whippetlovely Hope your appointment goes well today and you get the referral in place.

DD is managing the (yet again) increased meal plan now on the ward and we are looking tentatively at being discharged 🤞

Well I just completely lost it and threw dds lunch at her when she flat out refused to eat it. What have I turned into?

@Moomarre you remain a wonderful parent doing their absolute best who has been pushed beyond endurance for a second. Deep breaths, apologise when you feel ready but mostly forgive yourself. You would have to be super human not to lose it on occasion.

moo
I think we have all moments when we lose it. I certainly have my fair share of those - I barely recognise myself sometimes :( But we are all only human. And AN is just such a terrible illness. I hope the next meal is a bit easier. Deep breath.

@Curlyhairedassasin firstly Im happy to hear your dd should be coming home what a relief. I t went well the gp very nice and supportive she said she’s very concerned due to her age and doesn’t want this getting worse did referral that day. Already heard from CAHMS and booked in for three weeks time for the assessment. Told her she had to eat three meals and snacks she’s had a meltdown saying that is too much. We have done a meal plan so she knows what to expect each day hopefully will help with anxiety. It’s all healthy foods still though which I know won’t help gain too much but my thought is for now get her in to the routine of three meals a day and then try and add the meals she used to eat add more calories it’s too much for her at once otherwise. She’s cried about it and got upset saying she doesn’t want to be watched like a freak. She’s said she doesn’t want to eat at school in front of ppl I think I’ll bring her home for lunch Monday and speak to school about what they can do to help with maybe her eating somewhere else but I’d rather know she’s eating for now. Anyway lots of tears today but I feel relieved that firstly the gp did care and feel the same as me that she needs help and second that camhs have made the appointment as I’ve heard so many horror stories about them.

Sounds positive. DD also doesn't like to be watched but you won't believe to where the food disappears if we take our eyes off the ball for just one second.

Our ED stressed that is is important to eat every 2 hours. So we have breakfast - snack - lunch - snack - dinner - supper.

Three weeks is an awfully wrong time if things go wrong or she restricts more. We were seen within a week. Don't be afraid to take her to a&e if she eats very little for a few days. It will need checking out (heart rate, ECG, bloods to check electrolyte status). They can appear very well on the outside and be very sick. DD was walking, taking, kicking and screaming when she was taken by ambulance and placed into the HDU. I had no idea how unwell she physically was.

check Eva Musby - website and YouTube. Loads of advice (which at some point sadly didn't work for us).

Moomarre We've all been there. You're only human. Please don't be hard on yourself. When I've had times like that I say sorry to dd and tell her I get angry sometimes because I'm frightened. She seems to understand that. It's often those situations that bring on some talking and (hopefully) small steps forward.

This is such a scary and lonely journey to be on. Sending love to everyone and I hope you have a peaceful weekend.

Thank you for the kind and supportive words. Still feeling very ashamed. I’m finding the whole situation so stressful at the moment and dd is refusing to follow the plan. She’s 17 now, back down to 78% supposed to be on bed rest but just does whatever the hell she wants all while barely eating. Day before yesterday she stayed in bed all morning so didn’t eat her breakfast or snack then waited til I went outside to sort some washing and snuck out of the house. Didn’t come home until gone 11 and told me she’d had lunch a snack and dinner. Further questioning revealed she’d shared chips with friends for lunch (so probably ate about two) and had a couple of bits of carrot sushi for dinner. Plus a mini twister as snack. Then yesterday she skipped breakfast, refused to eat her lunch and was expecting to go out with friends all afternoon and to a party in the evening so not really eat then either. I’m so scared she’s going to collapse/go into organ failure.

She does similar in term time, waits until I do the school run etc then leaves the house.

Plus the secondary stress of trying to keep grocery bills down but spending a fortune buying foods she’ll possibly eat and then throwing away a ton of uneaten but mushed/dissected food.

Hats off to those of you who are actually coping with this!

If she is eating that little and doesn't follow bed rest, can you take her to hospital to get checked over? We are told less the 500 cal for a couple of days needs checking out in a&e.
I rang 999 when DD refused to get into the car to speak to someone and they would have actually sent an ambulance (but DD spoke to the call handler and agreed in the end to get into my car).

DD is eating the mealplan for now but before we were admitted, would not eat the plan and I thought I was losing my mind over the shear fear and panic and utter inability to help her. It is such a horrible place to be in... but if you cannot get her to eat even the bare minimum, you need to get her seem. The hospital will make her eat or feed via NG tube to stabilise her physically.

Moom it is so much harder when they're older, my dd is 17yo as well and you just don't have the same level of control over them as when they're younger.

Is your dd still under an ED team? Are they checking her physical obs? The only thing I can think of would be the threat that she could be sectioned if she doesn't eat.

You must be exhausted, be kind to yourself, I sometimes have to accept that actually the only person who can choose recovery is dd. I can keep her afloat but she has to swim.

Yeah 17 olds difficult to handle. Can't just ship them off to gp or hospital.
And gp, camhs , hospital don't need to share any information with carer/parents.

Moomarre my dd is also 17 so I relate a lot. I try to shift responsibility onto her and say things like:

What if you faint when out with friends? How will that make them feel? Maybe they'll be too worried to do stuff with you in future.

What if your brain isn't nourished enough to do well enough in exams for uni or the dream job you want?

How will you get a car, like your friends, when you have to declare your illness to DVLA and find a driving instructor who will take you on? Many jobs nowadays require a full driving licence.

How will you leave home if you can't afford to?

How will you travel if you can't get/afford the right insurance? or even worse - the airline won't let you get on the plane if you look ill?

How will you find love if you can't love yourself?

Having a family may seem way off in the future now, but it may be something you can't achieve if your fertility is damaged.

It feels mean to say these things but it's realistic that ED isn't compatible with living a normal happy life. I hear a lot that recovery comes after they get bored of the sheer boredom of living half a life while watching their friends move on. I feel it's my job to gently remind her that ED will always hold her back.

... and hope and pray that it slowly sinks in and one say she'll think 'Fuck this shit' and choose to live a full life.

Moonmarre my DD is 20 and we have been living this for about 4 years. She’s about 95% wfh atm but mentally still in thrall to ED’s vicious twisted nonsense.
When her weight drops or the voice becomes loud and dominant, the only way I find effective to get her back on track, is to withhold money until she’s eating the meal plan/has recovered the weight - whatever the target needs to be. She is at uni so still financially dependent to a degree and in line with a number of anorexics, she really doesn’t like spending her own money!
Not allowing her to drive is another one - as she would be a danger to herself and others until she’s eating properly - not giving the things she wants.
Yes bagpuss - we live in hope that one day she will be sick of living a half life instead of a full one!

The money thing is really interesting as my dd is the same, she absolutely hates spending her own money and gets very upset when her bank balance goes down. She's absolutely fine spending my money though 🙄

I know it's common among teens with an ED but I still don't really get why?!

Sorry to read so many are having a hard time. DD is the same with money, I read @Girliefriendlikespuppies that ED sufferers hoard money as they sometimes view its scarcity similar to how they view food as scarce when they are in the depths of their illness.

DD turning 17, with college and freedom worries me - we did FBT at 15 when we could control 3 meals / 3 snacks with school support - if she back slides controlling food will be difficult.

@Moomarre please don’t beat yourself up - I’ve said and done things completely out of my nature. We all get tired and exhausted - it is 24/7, we are caring for someone who does not want to get better - it is soul destroying. Look after yourself.

Looking for some comfort really - parenting a DD suffering from AN and I have to micromanage her life (food, activities, knowing where she is all the time) - I also go through her room and draws being vigilante to sharps and hidden food. Reading MN such behaviour is considered controlling, I have breached DD’s trust and I have ruined our relationship forever, and I must agree that is how I feel.

DD’s counsellor said I was controlling. How do I reconcile this with DD - unfortunately I don’t trust the ED and that’s what makes me seem like a nosey interfering control freak. I hope one day we can have a relationship, but fear this is damaged forever due to my policing.

DD had overnight leave from the unit last night to go to a gig, and then have home leave for the first time. This morning we found she had run away - last seen at 4.45 am in bed, gone by 7.45. Have called unit and police. Friends out searching in Liverpool. Police have her bank card details. Her (Ed-recovered) friend has sent her message suggesting she goes to hers. Taking photo to stations. Anyone else had anything similar?

Oh no Nan no suggestions other than what you're already doing but a handhold. I really hope she turns up soon.

Nomore you're not controlling, you are keeping your dd alive and safe. Normal rules do not apply when you have a child with anorexia. Is this is a school counsellor? If so personally I'd pull your dd out from that as it is absolutely not helpful for them to undermine you. I had a similar experience with a school counsellor and it made me so angry, I wrote a strongly worded email to the school outlining the principles of FBT, maybe you could try that?

Your relationship absolutely will recover and inwardly your dd knows you are keeping her safe and is grateful.

NanFlanders oh I'm so sorry 😞 You must be out of your mind. I hope she goes to her friend. Has she done anything similar before? Sending love x

Nomoreplease23 the counsellor is obviously not trained in ED. We have to be controlling to get them to eat and keep them safe. If we left them to it they'd soon be seriously ill or harm themselves. I'm sorry you feel your relationship is damaged but from reading the stories of those recovered from ED they thank their parents for everything they did to save them. It's a worry of mine too so I totally understand. Mollys podcast is very good and in one episode her family talk about the effect it had on them and their relationships.

https://www.bbc.co.uk/sounds/brand/p0f4gdm0

So sorry Nan. I hope she turns up/is found safe and well soon. You must be so worried.