To be angry with comment from A&E doctor

[whethertheweather]

DD is 18 and anorexic with BMI of 14.5. After months and months of delays she is just starting to be dealt with by an NHS eating disorder clinic. They called her in for the first in person appointment to do a blood test and physical exam, where she fainted. Blood tests were apparently off, they said O2 levels were at 80% and blood pressure was really low. The doctor at the clinic was very concerned and walked her over to A&E across the road for more tests with a letter explaining her position and the results of their own tests.

Nurse at triage says she needs a blood test so to wait and that O2 levels are hard to check with a pulse oximeter as DD's circulation is so poor in her fingertips. 3 hours later a doctor calls DD in, says he doesn't need to check her O2 levels "as I can see you're breathing". He then went on to say to her that people can exist quite well on 500 calories a day and that it's the constant going up and down with calories from one day to the next that is doing her body harm. He did an ECG, said it was OK and sent her on her way.

AIBU to feel incredulous that anyone would tell an anorexic it was OK to eat 500 calories a day? DD is trying so hard to eat but she's lost 45kg in a year and the scales are still going down.

I tried to complain to PALS, but they've said as DD is over 18 she has to authorise the complaint and I feel she's got enough on her hands. I'm sure the doctor's doing his best in extreme circumstances, but I want him to understand the potential impact of his words on vulnerable patients.

I do think it is a good that you will not persue medical negligence, your energy needs to be directed on your daughter.

By the sounds of it she needs admitting to hospital for tests and treatment. Push the ill health aspect, keep trying to admit her. 6 stone is too little for her height. Keep pushing. Is she fainting, can she walk unaided ?

If you have funds to get her into a private clinic preferably after the hospital stay I think would be an exellent idea. I should imagine they vary from city to city, if the first one doesnt fit the bill try again with another.

I have visited one of these private clinics, not for me but a relative, there were quite a lot of girls there, no boys, mainly middle class and I spoke with a few of them. One girl I spoke to said she felt less fearful being with others in the same situation and less pressure to make things up.

Her words.

Maybe you will find help talking to other parents at the clinic, advice and support and tips, all information.

I wish you all the best and hope she gets the help she needs.

Anorexia is such a hard illness to get to grips with.

You have to separate the anorexia from the person. Your daughter might be desperate to gain weight and to eat 1200 calories a day. Your daughter might hate the way she looks. Your daughter might never tell lies.

But the anorexic does. And the anorexic is terrified of changing her body shape back. And she'll tell you absolutely anything to maintain the status quo. You can't trust anything she says without objective evidence.

Not just on this matter, but on anything. It's horrible because you want to trust your daughter, but it won't be her speaking/acting a lot of the time.

OP I’m sorry to say, but I don’t think you have a full understanding of anorexia. You keep saying your daughter wants to eat and that she thinks she’s too skinny. If she did, then she wouldn’t have anorexia. You must understand that anorexia will make her avoid eating and will make her starve herself. Her being angry at the 500 calories thing doesn’t make any sense at all. She is just saying that she was angry to divert your attention and make you think that she wants to eat more calories. By giving you false hope that she wants to eat more, she is hoping you won’t monitor her closely and she will be able to continue to starve herself. That is how anorexia works.

But for a lot of people an anorexic in a wealthy western country is just as much to blame for their condition as an alcoholic, chain smoker, etc.

Well, herein lies the problem. A total lack of understanding of anorexia. Anorexia is a biological brain disease, largely genetically controlled but triggered by the environment. An anorexic has ZERO to blame for their condition.

@Pancakeorcrepe

OP I’m sorry to say, but I don’t think you have a full understanding of anorexia. You keep saying your daughter wants to eat and that she thinks she’s too skinny. If she did, then she wouldn’t have anorexia. You must understand that anorexia will make her avoid eating and will make her starve herself. Her being angry at the 500 calories thing doesn’t make any sense at all. She is just saying that she was angry to divert your attention and make you think that she wants to eat more calories. By giving you false hope that she wants to eat more, she is hoping you won’t monitor her closely and she will be able to continue to starve herself. That is how anorexia works.

This is sadly true. The body distortion is an integral part of anorexia. The lying, the distortions, the tricks - it goes with the anorexia. Even the loveliest, most honest, most peaceful child will become a liar, deceitful, manipulative, whatever it takes to avoid being forced to eat when the anorexia demon has its claws in them. It's not the child lying, it's the anorexia, it's the illness.

@AndSoFinally

Anorexia is such a hard illness to get to grips with.

You have to separate the anorexia from the person. Your daughter might be desperate to gain weight and to eat 1200 calories a day. Your daughter might hate the way she looks. Your daughter might never tell lies.

But the anorexic does. And the anorexic is terrified of changing her body shape back. And she'll tell you absolutely anything to maintain the status quo. You can't trust anything she says without objective evidence.

Not just on this matter, but on anything. It's horrible because you want to trust your daughter, but it won't be her speaking/acting a lot of the time.

Agree with this too.

OP, please do not believe anything your daughter tells you with respect to eating. It's not her fault, the terror of gaining weight will make her do this but if you don't see/hear things with your own eyes, they didn't happen.

I don't like it being said that annies* have "Zero Blame" -- implies they have no agency. DD keeps spinning me a line that it's "hard to gain weight". BS. She makes excuses for not attending counselling. She's an adult who lives away, I have to tread carefully. I am focusing on not her numbers and keeping the problem in the light. My requests are please tell your friends about this problem, please tell your housemates, think about getting your period back as an objective, etc.

*Yeah I know MNers don't like this word -- guess what, it's widely used on the pro-annie blogs etc. The annie-advocates like this identity. They embrace it.

You were not there and the words most gave taken out of context. Maybe he was trying to say that as she really struggles to eat, it would do less damage to her body to eat 500 calories each day than to go days with eating nothing and then have a normal day.

Your dd has enough on her plate to take on a complaint and investigation that ultimately will come down to he said she said. I'd move on.

Well, that's why anorexia is so hard to treat and so pervasive.
Anorexics have zero blame for being ill, it's not their fault. It's a biological brain disease. You wouldn't blame a type 1 diabetic for being diabetic, would you?
But, indeed, they are the ones who need to eat to get better. They can't do that on their own. They need a supportive cocoon around them to create an environment where there is no choice but to eat and holds their hand through every painstaking bite to recovery and weight restoration.
I have been 'fortunate' that my DD was anorexic while still a child which makes tackling the refeeding much easier. I live in dread of a relapse as an adult.
What anorexics do and call themselves while anorexic is very different to how they behave when recovered since this is part and parcel of the illness. The pro-ana websites only reinforce this once they are ill.

Anorexics are not all the same, as I have said before.

Some explicitly don’t want to eat and don’t bother with any charade that they do; some do want to eat but can’t.

From what I've gleaned from reading this and similar threads about anorexia, if it is, as another poster remarked upthread, 'a biological brain disease, largely genetically controlled but triggered by the environment', then it is never cured but may be managed. That is not to say that events in the future won't affect her perception of her body. It will be an ongoing journey made harder, I would imagine, by social media and ad campaigns showing extremes of body shapes.

It's not actually disease of the brain - that would be things like Alzheimer's, CJD, neurodegenerative diseases.

It's defined as an eating disorder.

@LoisLane66

From what I've gleaned from reading this and similar threads about anorexia, if it is, as another poster remarked upthread, 'a biological brain disease, largely genetically controlled but triggered by the environment', then it is never cured but may be managed. That is not to say that events in the future won't affect her perception of her body. It will be an ongoing journey made harder, I would imagine, by social media and ad campaigns showing extremes of body shapes.

@LoisLane66 The main 'cure' for anorexia is food. Once weight restored, usually the anorexic behaviour greatly subsides. I read a book once written by an anorexia survivor. She described the anorexia as being a passenger in the car. When in the throes of anorexia, it's grabbing the steering wheel, trying to get the car to crash. When recovered, it's in the boot. It's always there but you can mostly ignore it. Sometimes you can hear it knocking or shouting but as long as it's in the boot, you're OK.

Anorexia is a brain based genetically driven eating disorder
Being brain based and an eating disorder are not mutually exclusive.

@TatianaBis
I recommend you read this book:
www.amazon.com/Decoding-Anorexia-Breakthroughs-Science-Disorders/dp/0415898676?tag=mumsnetforu03-21

Written by a scientist, herself having suffered from anorexia, who summarises the latest scientific research.
Including that anorexia is genetic and brain based.

I don't need to read it thanks.

However, I recommend you understand the difference between 'brain disease' and the argument for anorexia as a biologically based eating disorder.

The main 'cure' for anorexia is food. Once weight restored, usually the anorexic behaviour greatly subsides.
I read a book once written by an anorexia survivor. She described the anorexia as being a passenger in the car. When in the throes of anorexia, it's grabbing the steering wheel, trying to get the car to crash. When recovered, it's in the boot. It's always there but you can mostly ignore it. Sometimes you can hear it knocking or shouting but as long as it's in the boot, you're OK.

For me this is so true. I was actively anorexic from about 17-23 but even in my 60s I’m aware that while I eat normally and am a bit overweight I still feel guilty for eating certain things and sometimes will skip lunch because I had a scone with my coffee at 11. I absolutely won’t let HCPs tell me my weight if im weighed because I know it will go straight to the anorexic bit of my brain that makes me feel panicky about being overweight. So I still definitely have disordered thinking around food and my weight even if I’ve not been in the tight grip of this horrible condition for 40+ years.

Anorexia isn't a biological illness like diabetes, it is a mental disorder and may have many factors. It's certainly not a reason to blame anyone for their behaviour, but they need effective treatment.

@TatianaBis

I don't need to read it thanks.

However, I recommend you understand the difference between 'brain disease' and the argument for anorexia as a biologically based eating disorder.

@TatianaBis

If you read the book, you may find that this is discussed. But hey ho.

Since the book was published, there has been further research strengthening the evidence that anorexia is a brain based disease.

Some links below (but I guess you don't need to read them either, you know best?)

www.waldeneatingdisorders.com/blog/study-boosts-belief-that-anorexia-is-brain-based-illness/

www.nih.gov/news-events/news-releases/eating-disorder-behaviors-alter-reward-response-brain

jeatdisord.biomedcentral.com/articles/10.1186/s40337-021-00466-w

@inheritancetrack

Anorexia isn't a biological illness like diabetes, it is a mental disorder and may have many factors. It's certainly not a reason to blame anyone for their behaviour, but they need effective treatment.

The latest evidence research is that anorexia is very much a biological illness like diabetes. Effective treatment means that this needs to be understood. The fact is that approaches which treat it as a mental disorder have very high rates of failure. The most effective method of treating anorexia is refeedingand creating an environment where there is no choice but to eat. CBT, talking therapy etc have very high failure rates because anorexia is not the same as other mental illnesses. While the brain is starving, anorexia will always be there. Weight restoration is the only way out.

@Balaboostah You’ve completely missed the point.

@whethertheweather my first experience of anorexia was desperately wanting to eat and gain weight and not being able to eat. My entire life was consumed by knowing that I needed to eat but not being able to swallow. Calorie restriction came later, but I liked the sense of control. I felt out of control with what was then known as 'atypical anorexia'.

I had a further brush with 'atypical' anorexia when my marriage broke up, and it was no fun at all. Then comes the fear of becoming overweight when you can finally swallow food, so you then start restricting calories for fear of ballooning.

You and your daughter are on a very long and difficult road, OP, and you both have my sympathy.

Thank you everyone for your comments, I really am taking them all on board. I'm trying to read and learn all I can to be able to support DD.

If anyone has any experience of managing an eating disorder whilst being at university, I would be really interested. Is it possible? DD is so adamant that leaving or deferring will be a failure that will make all her anxieties worse.

With a BMI of 14.5? I would have to say not possible unless she lives at home and even then unlikely. She needs someone to supervise her very closely and you can't ask housemates to do that.

Also, cognition starts to become affected at low BMI so she may find she just isn't up to it depending on how difficult her course is.

@whethertheweather
I don't have experience of a dd your age - my DD was younger when she got ill and then also with a later relapse - so my heart goes out to you. She does sound very ill.

I think you might need to insist she comes home. She won't be able to do this on her own while at uni. If she has lost so much weight so quickly then the anorexia must have its claws in her pretty deep. You may have to use whatever tools or leverage you have to get her home, even if its telling her you won't provide financial support. It'll be hard but her life is on the line here and she has to regain the lost weight to be able to get better.

There is an excellent support group here: www.feast-ed.org/
There will be people there caring for young adults who can provide more strategies and ideas of how to handle the situation.

Good luck to you - it's a hard journey but recovery is possible.