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.

There isn’t always an underlying reason. Anorexia is triggered by a negative energy deficit, this is now known after 17 years of research. In a person with the right genetic makeup it could be - too much exercise/not enough food, or an appetite diminishing illness, a quest to get healthier, or of course lack of eating because of depression/trauma.

Lack of adequate nutrition has a catastrophic effect on both the body and the brain and only food will repair it.

Yes OP, you would be right if it was your daughter to stop her exercise and compel her to eat, a good treatment team would coach you to do just that. It’s not cruel, it’s life saving and can be done.

There isn’t always a root but without food there is no recovery, it’s the frontline treatment.

I've tried my hardest to keep a balanced view to food with my now adult dcs.I couldn't bear to watch them struggle either way.
My dm is morbidly obese and I had anorexia...both can be fatal and destructive.

@Griefmonster yes it probably is very naive and of course unless I am in that situation, can't say how I would react. It's just mind boggling to me. There are people dying with cancer that are not allowed to die at a clinic due to protocol. Yet young people are dying due to anorexia also due to protocol. It's very hard for me to wrap my head around and I suppose I must count myself lucky that I have never went through it myself.

My sister is anorexic, now 47 but has been since we were teenagers. She's incredibly thin, addicted to exercise and scarcely eats. We know she will die, but she refuses any intervention and insists that she just has a small frame. It is hard on her DH and her kids, as she often projects onto them, so her eldest is facing a lifelong struggle with body image and food (though thankfully not as ill as Dsis- yet).

I've often thought about what options there are for feeding tubes etc, but she would never accept it and sadly we are just waiting for it to take her. She has already had several health scares due to a shocking BMI, but is surprisingly high functioning and has a full time job on the NHS- Christ knows how as she must be constantly drained. It's an awful, awful disease and I've always been very, very careful with my DDs to ensure they don't suffer the same fate, but some of it is out of our control.

Two girls in my class at secondary school suffered from anorexia to the point that both were sectioned at different stages. The difference in treatment was marked - one's family could afford to pay for private treatment in a specialist clinic while the other was in a ward in a psychiatric hospital with people suffering from a huge range of mental health issues.

@Bobbybobbins was there a difference in outcome?

I don't think people suffering with anorexia want to die, so you can't liken it to suicide in that sense. I think it's a matter of wanting to live, but being unable to do what they need to in order to live.

I have to say I'm a little concerned at the messages around ED treatment on this thread.
There will obviously be differences between adult and child provision, but I am a ED specialist nurse working with children so can speak from that point of view.

1. you can absolutely force feed people with eating disorders, providing they are at immediate physical risk
2. while there is incredibly high demand for services currently, you will not wait long or be turned away because you're not thin enough. Guidelines dictate that urgent cases ve seen in a week, and routine in 28 days. 3)treatment is not withdrawn once physically stable
3. you cannot engage in psychological work until intake has improved abd cognitive function has improved.
4. yes you do need buy in to do psychological work. There is no magic wand and until someone is ready to change we can only keep them physically safe.

I haven't seen the show you mention - was she an adult? This nay feed into it, although I won't pretend to know the details of adult care provision

Anorexia is not a disease about food -- it's a disease about control.

Take away control over self (by force feeding) can actually increase the deviousness about controlling behaviour around food the moment the anorexic gets a chance. Never mind tube feeding is unpleasant in itself.

There is some phenomena to do with how starving oneself leads to a kind of addictive 'high' that anorexics feel. They come to quite like this feeling. But this is just a comfortable feeling for the annies and makes them feel somehow 'in control'. They wouldn't get addicted to the feeling without the obsession with Control part.

I’m pretty sure you can section someone and force them to be tube fed.
But anyway, I know people who have been tube fed and weight restored and then leave hospital and lose all the weight dramatically again. It will never end unless the person is absolutely committed to recovery, and even then sometimes the body is too damaged.

My 16 dd is anorexic and has been hospitalised several times. She has had everything CAMHs can throw her. Nobody could coach me to compel her to eat, it doesn’t work like that. Many anorexics are autistic and autism can make it harder to treat. Cases are often more severe and longer to treat. The treatment is family based therapy and food is the medicine. Dd has autism and finds family based therapy hard. Experts are now looking at changing treatment for those with autism.

We have resorted to medication and things are looking up. We are lucky as CAMHs in our area although by no means perfect do jump in quick.

@purplepoppet92 adult ED services are not great at all, so many end up as SEED patients because there just is not the capacity for them. Once you turn 18, the support drops dramatically. It’s absolutely rubbish but it’s true. It’s hard because you don’t want to dissuade people from getting help, because there isn’t a hard and fast rule for the whole country, but it’s also important to raise awareness of the issue so it can change.

@weetus

They both physically recovered to an extent in that they were able to return to school after months of inpatient treatment. I know my friend who was in a general ward found it a very very difficult experience. Having visited the private clinic, the resources and set up were obviously more tailored to EDs. They are both now incredibly successful in terms of their careers. Both still a low weight. They are two of the most 'driven' people I know.

And can I add to above - private treatment does not mean better treatment. There is no special intervention being given at private services that will be the answer. They are not privy to a new treatment model that the NHS is not. I've worked in both systems.
Also, the NHS pays for beds in private hospitals - essentially you can pay yourself or allow the NHS to, but its for the same bed.
I feel so passionate about this because loving family's bankrupt themselves to get the best treatment for their child under the illusion that they must pay. You don't!

I feel like if she had anorexia, I would literally sit on top of her and force feed her and stop her from exercising.

You probably didn’t mean this exactly literally, but what you’re essentially saying is that you would risk choking your daughter, repeatedly, and you’d tie her up 24/7 or have someone awake and watching her 24/7 to prevent exercise/vomiting/etc. The dangers of you doing that for a day would probably be more immediate than the danger of letting her carry on as she was for a day. How long would you go on for? At what point would you even start- what morning would you wake up and decide to full on do this? When would be the first time you’d force feed your daughter and stop her throwing up? How much physical violence would you be willing to inflict/have inflicted on you if she fought? What precautions would you take to stop her from running away from home? Overall do you think she would be more or less suicidal if her mother sat on her and force fed her?

I think it’s easy to say “I’d do anything rather than let her die” but the reality is harder than that.

In any case, forced compliance usually makes someone with an ED fake recovery until the supervision stops, at which point they carry on exactly where they were, probably more traumatised from the treatment. They will get better at hiding it because they will fear a repeat of the treatment. And at some point they will be of increased risk of serious illness/death from the ED behaviours, eg from heart or kidney failure. Even if at that exact point they aren’t necessarily at their lowest weight. Or they are at risk of outright suicide due to the disease and its common companions like depression.

It’s an awful disease, basically.

I feel like I will be heavily flamed for saying this but I will. I have a 7 year old daughter and I feel like if she had anorexia, I would literally sit on top of her and force feed her and stop her from exercising. I really wouldn't care how much emotional stress that caused her as I would rather that than her dead. That may sound awful and totally ignorant but I just can't imagine allowing my daughter to waste away before my eyes, I just don't think I'd physically be able to allow it to happen

It’s not as easy as that. Anorexia is very complicated.

Hold her down and force feed her- chances are she will vomit it back up. Or take laxatives, or get up at midnight when you’re in bed to jog on the spot for hours.

And you will be doing it every day, multiple times a day, for weeks and months.

It is a constant, exhausting battle that you cannot take your eye off for a millisecond.

@purplepoppet92

I have to say I'm a little concerned at the messages around ED treatment on this thread. There will obviously be differences between adult and child provision, but I am a ED specialist nurse working with children so can speak from that point of view.

1. you can absolutely force feed people with eating disorders, providing they are at immediate physical risk
2. while there is incredibly high demand for services currently, you will not wait long or be turned away because you're not thin enough. Guidelines dictate that urgent cases ve seen in a week, and routine in 28 days. 3)treatment is not withdrawn once physically stable
3. you cannot engage in psychological work until intake has improved abd cognitive function has improved.
4. yes you do need buy in to do psychological work. There is no magic wand and until someone is ready to change we can only keep them physically safe.

I haven't seen the show you mention - was she an adult? This nay feed into it, although I won't pretend to know the details of adult care provision

Yes, certainly treatment times have improved enormously over the last few years. (8 months we waited) I’m talking about treatment worldwide really and it is often withdrawn way too early in parts of the world (and in the U.K. sometimes people are sent home while still very ill and parents unprepared for the slog ahead) there is a shortage of beds.

The buy in I mentioned was to do with the food piece, that’s the frontline medicine as you’ll know. It was non negotiable, kid had to eat.

And yy to Purplepoppets post. My dd has been tube fed several times and not wanted it. It was crucial. Her BMI had never been that alarming but she gets physically compromised very quick. Our ED don’t really look at BMI that much. CAMHs are very much around when she puts weight on.

@weetus

I understand people saying that tube feeding isn't getting to the root but surely it buys some time? How is it any different from offering antidepressants to depressed people? That's not getting to the root but buying some time until they can see a therapist.

@weetus it’s nothing like offering anti depressants. A depressed person, although they might not want to take the pills, knows that they are meant to help. An anorexic person views food as the enemy and will do everything they can not to consume calories.

Also how easy is it to pop a pill compared to the trauma of being force fed through a tube.

I appreciate your passion of wanting to stand on your daughter and force feed her but logistically that’s not possible unless you want to choke or seriously harm her.

Anorexia is a scary, scary thing. I had a brush with it as a teenager and they were the worst months of my life. It felt like fading away but not being dead, it was so strange. It also drove me into crippling depression so bad that even when I felt like eating, I didn't have the energy anymore. Attempts to intervene, even just verbal ones, made me hysterically upset. My family were quite clueless to be honest and didn't really know what to do, and to be honest how I got past it to this day is a blur.

I also have a friend who as a girl was institutionalised with anorexia. It was effective for her but she still had ED tendencies. We have lost touch now but I worry about her from time to time. I don't think I had true anorexia, I got into a lot of pro ana media and it really is such an interesting disorder when you look at it objectively, because it can be brought on just by being immersed in it, if you are in a vulnerable state.

I also was naive about how people died from it, but as others have said you can't force people to consent to long term forced treatment and even with intermittent intervention, over time you can still be weakened to the point of organ failure I suppose. I'm so so sorry to all those who have loved ones who have suffered from this; it's such a devastating thing.

But yes I know adult services aren’t that great.it does feel like a race against time to get dd well before she turns 18 so she doesn’t need adult.

It's definitely not as simple as force feeding someone. Also like addicts, ED sufferers can display manipulative behaviour like lying about meals eaten etc.

I have a dear friend who has been treated as an in and out patient for anorexia since she was 11 (we are now in our 30s) I worry nearly everyday I will lose her either to one of the health conditions related to her ED, or to suicide. I have been there through the APPALLING (lack of) support she has received through local NHS mental health services - including falsifying notes to her GP; denying her access to treatment unless she eat carb heavy meals in public; providing her with resources for ‘self care’ which included suggestions to both ‘start a new diet’ and ‘treat yourself to a full fat desert’; she has been assigned support workers untrained in mental health; been told unless she accepts care she knows to be inadequate she will be deemed ‘a functioning anorexic’ and discharged. It goes on and on year in year out. It exhausts me and I don’t even have to live it like she does.

My friend is highly self aware with a high level of emotional intelligence. She hates this condition which has its claws in her and desperately wants the help and support to break free of it.

I’m sorry OP, I don’t know if this answers the questions you have, but I think it’s important to know how dire ED support can get in this country. And it’s not just lack of resources, my friend is dealing with staff who are wilfully negligent and abusive.

If you went into a&e and said you were going to kill yourself you certainly would not be held until you were no longer a danger to yourself. You might hope that is true but it definitely isn't. You would be out as soon as they could turn you round.

Our family's experiences with adult services have unfortunately been that you very much do get turned away as 'not thin enough'. I'm sure no clinician wants to do it, or phrases it like that, but it is the reality when you have underfunding, too few beds and too many patients. You admit the most critically ill, what else can they do?
But also in our experience, if you do eventually get admitted (by which time it is a long way to recovery) the services are excellent and with you all the way and outpatient help from the same team continues after discharge from the inpatient ward.
The services are great. But we don't have anywhere near enough of them to intervene as early as we should.
Children's I gather are much much better in that sense which fits with what purplepoppet has said. You move to adult services at 16/17ish.