To ask someone to explain to me a little more about anorexia?

[weetus]

I'm just watching a documentary on Amazon prime called 'Emma wants to live'. It's a documentary about a young girl with anorexia that sadly dies. She films parts herself and states that she knows the documentary will end in one of two ways - her recovery or her death.

I am watching it a little bit gobsmacked - one picture shown of her really, really shocked me.

So I may be being ignorant here but I have to ask why wouldn’t they put a tube down her throat and hold her in a psychiatric treatment unit undergoing intense psychological treatment. I still don’t get why they can’t do that? Like if I went to the hospital and claimed I was going to kill myself I would be held until I was deemed safe to leave. So these poor people with anorexia are just committing suicide slowly. Don’t understand why more can’t be done.

In this documentary it seems to me as if they had explored all avenues of treatment and she could not be saved, however, surely she could have been saved had she been tube fed? I imagine that would be a horrible experience for anyone suffering from anorexia but if the alternative is death then surely it is necessary?

I hope I don't cause offence but I genuinely just wanted to know why this is the case as I am sure there is more to it.

I think it’s oversimplifying to say anorexia is all about control. That a person controls their food intake because they can’t control anything else in their life. I really don’t think that’s what it’s about for everyone. You can’t pretend it’s not about being thin just because that seems too obvious. And of course doctored images of thin beautiful women have a part to play. The control thing is probably the case for a lot of more advanced cases of anorexia, but in the earlier stage I think it is very much about body image.

It's a bit difficult to argue that those with eating disorders are doing something wrong when they are just taking what is quite a normal societal view up a few notches.

Yes, I know very few women who have a healthy relationship with food. I worked in fashion for a long time (modelling, buying, mags) & the vast majority of women were very slim. So many just didn't eat. There is also a lot of disordered eating & overexercising.

Exactly @MedusasBadHairDay - I've often used the Fast 800 programme, for example, to justify my eating habits because it's not a million miles away from how I eat when I'm going through a relapse. But because it's a successful diet that's recommended by a 'doctor' and lots of people rave about, I can pretend that it's fine.

@bluebluezoo it was genome sequencing, fell on the 100th percentile for predisposition for anorexia from the genome study

@mynameiscalypso

Exactly *@MedusasBadHairDay* - I've often used the Fast 800 programme, for example, to justify my eating habits because it's not a million miles away from how I eat when I'm going through a relapse. But because it's a successful diet that's recommended by a 'doctor' and lots of people rave about, I can pretend that it's fine.

Yep, that and intermittent fasting! Oh hello socially sanctioned eating disorders..

You’re very naive if you think going to hospital and expressing suicidal intent will get you held and sectioned.

@wombleflump I’m sorry, I’ve read some research papers but I not an expert on understanding all the genetic research terms and feel I need to be to understand some of the papers! They have already identified several genes though which give a high predisposition for developing anorexia. My particular one was explained on a percentile, the same way kids height is done. If there were 100 people in a room I would statistically be the one most likely to develop anorexia out of the 100. You can have the gene and be on the 100th percentile but not develop these things as it takes other factors too. For example I’m genetically high risk for melanoma too but I can lower my chance if actually getting it by avoiding sunburn etc

I thinj

There’s also the issue that if your weight is in a ‘healthy’ range, or even if you’re overweight, you can still be anorexic, because my weight wasn’t dangerously low, it was fine. I went from being a bit chubby/size 14 to a size 8 in less than 4 months. I lost 5st. My hair was falling out, I was passing out, I lived off Diet Coke and cigarettes. But all I got was compliments. No one noticed/was around to notice.
Then I discovered throwing up. And that meant I could eat so that was even better.
It wasn’t until I ended up in hospital vomiting blood that anyone even noticed something wasn’t right, I’d had an ED for maybe 6 years by that point.
I still struggle with it. I veer from binge eating, to purging, to starving. I feel like my obsession with food is ingrained by this point there is no way to eat normally.

Absolutely heartbreaking messages on here. @babbaloushka, yours very much resonated. My partner's sisters have both been affected (and it is rife amongst the wider family) and we're very concerned about the control exerted over our niece's eating and exercise. She has confessed to being scared of mum when it comes to food. We feel quite helpless about the situation really and whilst we've tried to shield our own daughter from it, when she was eight she did pick up on her Aunty's odd attitude towards food with her children and questioned why it was so. I hope your sister will accept help at some point. X

Owl Yep, I went from a 16 to a 10 in about 5-6 months. Managed to get it under control, but then gained weight thanks to disability/comfort eating. So I went back up to a 16, I was worried I was falling into old habits so I told a HCP I was concerned, she looked me up and down and said, "I think you'll be fine". I got the implication.

I struggle to understand it massively. One of my closest friends dd has an eating disorder. Makes me very sad. I struggle to understand chronic anxiety aswell.

@MedusasBadHairDay yeah I can well imagine that, when I was in hospital the underlying attitude was because I was at that stage a very average size 12 then I was just a silly girl who should stop obsessing as I looked fine. My ED heard ‘fuck off fatty’ and I stopped eating again.
My weight then plummeted to 7st which again at 5ft 8 with the kind if body shape that stores weight around my middle (even at 6.5st I had 26 inch waist, but I was also a 26 inch hip and a 26inch chest) I learned that as long as I hid my stick thin arms and legs no one would notice how thin I was. Then I’d break and eat all the food and pile on 3 stone or 5stone and the cycle would start all over again. I kept clothing from an 8 to an 18 and cycle through them a few times a year. It was madness. I finally managed to get it somewhat under control when I had my children. I still yo-yo but not so extremely.

@weetus like @Ch1ckenL1cken and @Lougle I'm a parent to a DD with anorexia. I know you caveated your statement about parenting a child with an ED but it was crass nonetheless. Being a parent to a child with an ED is disorientating, relentlessly awful, more challenging than anything I've ever experienced.

Whilst professionals are there the reality is parents (in the situation with children affected) are in charge of meals, trying to coax and cajole them to eat, listening out for compulsive exercise, being sick, checking bins or signs of food being stored in mouth or up sleeves and then disposed of, being abused verbally or physically, not being able to stop your child repeatedly bang their head of the living room wall with blood smeared across it, seeing them self harm in other ways, seeing your child diminish physically and be so torn apart from this horrific illness.

Most people who are ill want to get better and have expert medical help. Those with an eating disorder don't want to get better and the experts are not there for every meal, every snack - parents are stumbling in the dark.

There are three threads on the ED topic which detail the experiences of parents of teens with EDs - have a read of them to understand the reality of the condition.

Re photos of thin people being triggering - from my experience not so much as a instigator of the illness but definitely used as part of 'bodychecking' during the illness. We've put a shimmer material over all the mirrors in DD's room and call her out on bodychecking (either physically trying to 'measure' her legs by putting hands round them, or by looking in windows or by checking other people's bodies) - we're alert to how she does it now - but to her it is a compulsion.

Sending love to all affected by this illness

Whilst you’re sitting on your daughter to stop her exercising, who is caring for your other child and working to pay your mortgage?

That was my widowed boyfriend’s situation when I met him and his teen anorexic daughter. She had been withdrawn from school so that (a) she couldn’t exercise secretly and (b) because her specialist team said she couldn’t even afford to burn the calories walking between classes. So she had to go to work with her dad, every day. Fortunately, that was possibly. But even then, it impacted how much work he could do.

And he couldn’t take his eye off the ball with her brother, impacted in his own way by bereavement and worried sick about his dangerously ill sister.

So yes, you’re naïve about just sitting on your daughter, although I do understand where you’re coming from.

This is all so sad to read. My friend's daughter suffers from anorexia nervosa and they've been to hell and back. Thoughts are with everyone

When I was 14 my first ED was triggered by food poisoning. I lost lots of weight and liked how it felt. I then struggled to start eating again.

Later, after a divorce, I stopped eating again. I didn't have a period for over a year and was wearing children's clothes, despite being 5 ft 5.

In my case I loved feeling thin. If my BMI didn't register me as "underweight" I considered myself fat.

I "blame" my abusive mother for a lot of my issues and have been NC with her for years. No ED issues now. I do still range between a size 10 - 14 but I don't think that's unusual for a middle aged woman tbh.

Ex anorexic and now an eating disorders professional here.
Even in the mental health field eating disorders are so misunderstood, the amount of times I've heard really harmful and uneducated comments from doctors, nurses and consultants that work in mental health (but don't specialize in ED) is astounding.
The root of anorexia is that it is a means for coping with life, it's a safety net for the individual and something that they see as a friend even though they are well aware of the ways it impacts their life negatively.
As someone restricts their intake the brain functioning changes dramatically and they become obsessive, rigid thinking, unable to concentrate on much other than food, emotion avoidant, ritualistic and will go to great lengths to hide their illness or protect the illness.
Often it starts as a response to trauma or a way of controlling difficult to manage emotions (because when you restrict to a certain point you don't feel emotions as intensely). It's not really about being thin but it becomes something for the sufferer to focus on and there's usually a big fear about what it might mean to let go of the illness and be in a bigger body (which when you get down to the nitty gritty is usually a fear of losing control, for people seeing them as a person who is imperfect, for not being able to use their body to demonstrate the mental pain they are in)
If somebody is tube fed against their will recovery is unlikely to be maintained long term. There are physical complications such as refeeding syndrome that have to be considered and for some patients after they get to a certain point they are considered a severe and enduring patient, meaning the likelihood of recovery is low, so instead the aim of treatment is to come to some sort of compromise which will be individual for each patient in which teams try and improve the quality of life for the patient alongside their eating disorder.
The team at human concern said in the documentary that they didn't have full hope that emma would recover, but their treatment model of making her feel safe and loved meant that she was able to take bigger steps towards recovery than she had done in a long time. At the point she was at most hospitals would not attempt to refeed her as it would have been very unlikely to work, and for some anorexia sufferers in this country it is at this point that they can apply to the courts to cease treatment, or treatment teams may decide to arrange palliative care.
Anorexia is such a cruel theif and no one treatment model is right for every person. People think that hospital treatment is the best option but the current evidence base for young people is family based treatment in which parents are empowered to work with professionals to treat their child and the success rates are promising and have better outcomes than inpatient treatment. Most of the time inpatient treatment becomes a revolving door and patients learn lots of unhelpful behaviours and habits from each other.
Hope this helps, I've practically written a novel there!

kiabella

Really interesting, thank you for sharing your experience. My friend was admitted to an ED unit and it seemed quite shocking, they would have to sit for hours with food in front of them and couldn't leave until it was finished. This became a competition between them as to who could last the longest, it seemed utterly unintuitive to me and very Victorian almost?

Anorexia is a modest and foremost a MH issue. And re the forcing down to tube fed - that's a very dubious practice, we are thankfully a long way from the times of "long stay hospitals" for people with additional needs and MH issues where maltreatment was the norm. To do that to a person against their will who already has MH issues is cruel, will exacerbate the MH trauma and won't address the underlying issues. Eating disorders are very very hard to cure, and intensive and very specific therapy is needed.

*first and foremost, not modest!

I was hospitalized off and on for year's, was healthy, and currently am relapsing. Being tube fed is awful. And trying to control people with anorexia makes everything worse. Its an awful disease. I don't fully understand it myself after 25 years.

@loveistheonlyhipe
We have these table battles all the time where I work. They're exhausting for everyone involved and just girl the competitive nature of the illness but at the same time if you try and counteract that with separating them at the table it's impossible to staff because everybody needs to be watched (and ideally have table support trained staff but even that isn't always happening!!!) To try and counteract it our meals are limited to 30 minutes and every meal is a fresh start so you don't carry food over into the next meal like some units do. Giving proper table support takes a lot of skill and practice but it's vital for good outcomes, these patients are never going to be able to make the choice to do it themselves at first so you have to remind them of all their hopes for the future and challenge the ED voice in their head to help them do it until they find that drive to do it for them.
Everybody I've ever looked after has said they find it helpful when I challenge their anorexic thoughts or push them towards recovery even when they're saying they don't want it. It makes them feel like they matter and that we give a shit. You can't take the first answer as gospel with this illness and I really think establishing that relationship and letting them know this is more than just a job is key.