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.

Anorexia has the highest mortality rate of all mental health conditions.

OP, the term ‘committing suicide’ shouldn’t be used any more since it is not a criminal offence. Refer to someone as ‘taking their own life’ or having ‘died by suicide’ instead.

[quote weetus]@ghostyslovesheets not idiotic at all - it's a mental illness, there is no rationale behind the thinking. [/quote]
there is rationale... anorexia is a very effective coping mechanism. if it weren't effective at accomplishing whatever the sufferer needs to accomplish (not weight loss; usually some affect/emotion-related task), it wouldn't be so difficult to treat.

In my case, anorexia was about control, me being in control of me. I had no control of stuff in my life, but I did have control or hat I ate. It was the only control I could exert in my life. I was a teenager at the time.

However as an adult I have improved and am no longer technically anorexic, but in times of stress I do regress.

I find the solution comes with understanding your individual triggers. However I’m guessing it’s not the same for every one.

It’s all very sad, I always felt that eating disorders were neglected. NHS mental health services were woefully underfunded 5 years ago and they are now under massive strain due to the fallout from the pandemic. to all affected.

My DD1 (now late 20s) has battled with anorexia for 10 years..and yes she has been tube fed. Not until 9 years in tho..at her lowest she was 5 stone 9 (at nearly 5 ft 10 tall) and a living skeleton. She had some help but not enough, for years and years until two years ago when she hit rock bottom and was admitted, tube fed and then went to a specialist ED unit. From that point, medication and a lot of support has been the way forward and amazingly she has maintained a (slim) healthy weight for over a year.
It won't ever go away, and as other posters have mentioned , she is one of those highly intelligent, highly driven, high achievers. She's also on the autistic spectrum. And she's a doctor herself.. and was still working with a BMI of under 13 :(
She retained insight even when her ED was at its worse..and THAT was the factor that has assisted her recovery so far.. she did not want to be like that any more.

I don't think she will ever be free of it.. her rigid mindset is inclined that way, but what is finally aiding her recovery is a true desire to just get on with life now.

Anorexia has hallmarks which outline it, but every patient is different so even getting through the door of the Eating Disorder Services can be tricky.

As an example, DD1 (15) has SN and wasn't really eating in lockdown 1. She seemed depressed. I took her to the GP, then hospital, when she was 40kg. They decided that she wasn't deliberately restricting, but was 'sad'. They were glad that CAMHS were involved. CAMHS decided that she was 'sad' but it was understandable, as we were in a pandemic. They were reassured that Paeds were involved. Both discharged us, leaving us with 3 monthly dietician appointments. One classic quote was 'I can't make her eat....' from the dietician.

I phoned the GP to say I was concerned, a few months later. He said he would 'have a word with the dieticians'. Dietician tried to refer to Paeds, urgently, as she had dropped to 37kg at 165.2 cms tall. No response from any of them.

8 months after the initial referral, I phoned the GP and said 'Her standing heart rate is 144, so I just wanted to check that is ok with you....' The GP said it wasn't ok. So I said 'Ok....well we've been saying we're worried about her and getting nowhere. Now her heart rate is 144 when she stands. I don't think that's ok, I'm a nurse, but nobody else seems to be worried about her, so...' She was sent to A&E and admitted for 9 days. Finally, we were seen by the Eating Disorder Team and a psychiatrist.

Now, we're 10 weeks on. Refeeding is going well. I am getting 2500-3000 calories per day into her. But she's having both antidepressant and antipsychotic medications because she's unwell mentally now. But I know that it's all on a knife edge. She could wake up tomorrow and refuse to eat at all.

As for Emma. She was chronically ill. She had been restrained for tube feeding and then restrained after tube feeding to prevent purging and exercise. For years. Her psychiatrist had spoken to her and they agreed that the treatment wasn't working. She desperately wanted to go the clinic and they knew they were risking her life by sending her. She knew it was her 'last chance'. Personally, I think she died the minute she got there, in a sense. The amount of calories she was taking in was woeful and they were still assisting her to walk. But, she was deeply in the grip of the illness. Even at her most ill, she refused to rest and insisted on sitting up. They were really providing hospice care. There was no hope for her, really, there. It's tragic and it's shocking. So shocking.

I'm not for one second blaming the parents either, I'm just saying from a personal point of view, how do the parents actually restrain themselves from taking total control and making them eat.

That really does sound like blaming the parents. If it were that simple, don’t you think they would have done it? Specialist doctors can’t just take control and make someone eat. What makes you think parents could?

My DSis was first hospitalised for ED at the age of 11. She was an inpatient for 8 years at 4 different hospitals. 3 were NHS, one was private, but all were NHS funded.

Some of the hospitals were terrible in that she learned habits from the other patients. How to use her fork to squeeze fat or oil out of meals and flick it onto the floor to get rid of precious calories, how to drop or hide food without being seen, how to exercise when on 2:1 obs, how to self harm.

She was sectioned twice. She was tube fed multiple times. We were told over and over again how ill she was and how likely she was to die. She did not care.

Believe me, you say you think you'd hold your daughter down and force feed her - my DSis needed 3 men to restrain her at times, even when she was seriously weak. It was almost like this demon inside her that was controlling her gave her superhuman strength. She ripped her tubes out. She managed to find supplies in a secure ward to hurt herself. Other patients that couldn't find ways to self harm used to run directly into walls.

It is a horrible, horrible illness. It is devious by nature and as PP said, an awful physical manifestation of a mental disease.

20 years on and DSis is thankfully doing well. She had some very, very good treatment and they tried everything until they found something that worked. But she still has to be careful. She knows that any small thing could trigger the ED again. She still has fairly regular therapy. Despite the years of treatment, you never really recover.

@weetus 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

That would further fuel her anxiety around food. She would view food as a punishment. Anorexia isn’t merely wanting to be thin, it is a complex mental illness. It’s an act of self-harm, a coping mechanism. That’s why psychiatrists are involved. They try to get to the root cause... sexual assault, fear of failure, pressure from strict parents etc. Gaining weight won’t erase the trigger.

Not all inpatients on an ED ward are sectioned to the extreme degree where they no longer have any rights over their own body. However, the most severe patients are sectioned and tube fed, as with any severe mental illness.

The problem I found when looking after people who had been admitted for ng feeding due to anorexia, was although their physical health was being addressed on the ward, we were pulling them back from the brink as far as their bloods etc was concerned, they got no inpatient psychiatric support. Nobody came and spoke to them and offered support through the process, as nurses on a busy medical ward, with very little actual training on ED, we were not in a good place to offer that sort of support. Even though you had 'saved' them this time you always felt like you had sort of failed them. I hope that has changed in the last five years.
The tubes also 'fell' out a lot even with bridles, they would find ways to over exercise, like going for a bath for over an hour but actually spending the time dead lifting a commode they found in there or jogging on the spot, leaving the ward to go to the shop and running up and down flights of stairs repeatedly.
Some were very determindly focussed on continuing to starve even when they had verbally consented to treatment, they had largely been cajoled/threatended/guilted into it by family. The over riding sense you got from them was of huge anxiety and an almost palpable sense of fear of gaining even the smallest amount of weight. Making them better physically, meant doing something to them that they had put all their strenuous efforts into avoiding and causing them real mental distress to boot.
Anorexics were one of the hardest patient groups to care for in hospital, although alcoholics came a very close second. Both groups needed a lot more than we could offer to recover.

One of the most dangerous times for someone with anorexia is when they're being force fed/ getting weight restored. All the shit that you have used restriction and starvation to ignore comes to the surface and you've lost your only coping mechanism. Aside from the physical impacts of starvation, that's why a lot of people die. They can't cope with a life without restriction. It's not as simple as eat more = you're better. I also second the comments about anorexics being sneaky. I've relapsed twice in the last few years despite my DH and family knowing about my diagnosis and neither noticed until it got to a crisis point. I became very good at making it appear like I was eating normally but actually only eating 200 calories a day for months at a time.

Oh and legally you can force being to be force fed if it is found that you do not have the capacity to refuse consent for the treatment. Anorexia is treated slightly odd in legal terms (arguably because of the stereotypes about it vs something like alcoholism which is often seen as the sufferer's fault and the stereotypical patients are not young white middle class women but that's a whole other debate)

@ghostyslovesheets

tube feeding would only make her gain weight - you can't legally imprison someone for not eating and at some point she would be released - with all the issues that make her anorexic still untreated.

It's a very very complex disease - in my case I just enjoyed feeling hungry and felt like I had no will power if I gave in to the pain - utterly idiotic but there you go

When you say you enjoyed feeling hungry how about your image was/is it a positive thing you see? Do you ever notice anybody else and think gosh they are huge? Because compared to someone tiny even a size 10/12 probably seems enormous.

@Bul21ia I can only speak for myself but my body dysmorphia only extends to my body. I see people who I know logically are bigger than me in terms of dress size, for example, and think they look amazing and that I look massive in comparison to them. Even if I know logically that can't be the case, it doesn't change what I see when I look at myself. I actually barely notice other people's weight other than wishing I looked more like them (whatever their size)

What I noticed when you were talking with them, there was an obvious mental noise happening, always there in the background, a bit like but not the same as when you are talking to people who are actively hearing voices, distracted by what is happening inside their heads, physically there with you, but not completely present due to the noise. I hope that makes sense ?

www.goodreads.com/book/show/623649.Catherine

Being force fed if you are a sane person must be horrific and realistically that won’t do any good. How traumatic for the person.

It’s an interesting topic.

It’s funny how some people seem to want to eat more/less more if they are stressed I’m totally in awe of someone who is highly stressed/upset yet they want to comfort eat.

Whenever I’ve had a tough time in life food is the last thing I want.

@frumpety

What I noticed when you were talking with them, there was an obvious mental noise happening, always there in the background, a bit like but not the same as when you are talking to people who are actively hearing voices, distracted by what is happening inside their heads, physically there with you, but not completely present due to the noise. I hope that makes sense ?

That is so true! DD1 was having her i2i session today (it's an intensive community support programme where 2 support workers visit the house for 1 hour per week, initially) and even though she likes the workers, was trying to be engaged, they would say something and she'd reply 'the dog is being really silly today....' She has learning difficulties, but her attention span has definitely decreased.

I used to be on a forum for girls with eating disorders, it wasn't pro-ana exactly.. but it wasn't just about recovery either IYSWIM.

We just accepted that at some point a regular poster might stop posting, either because her family had staged an intervention and sent her for medical treatment/ force feeding or she'd died. Of the former I don't know a single one who ever recovered, they might briefly gain some weight, but soon be right back where they started. I wonder how many of them are still alive today.

I think that you are massively underestimating the determination behind it, and the utter terror not having an ED provoked. The lengths they would go to in order to hide what they were doing to themselves. And the joy and satisfaction that suffering actually brought.

Please could someone who knows clarify something to me? Are images of very slim/thin models or, for example pop stars likely to trigger anorexia? I've always felt that seemed a bit simplistic, but happy to be corrected.

@frumpety

What I noticed when you were talking with them, there was an obvious mental noise happening, always there in the background, a bit like but not the same as when you are talking to people who are actively hearing voices, distracted by what is happening inside their heads, physically there with you, but not completely present due to the noise. I hope that makes sense ?

It's generally because you're not eating enough for your brain to be able to function properly. My psych says your brain alone needs 500 calories a day and so if you're eating less than that, you're clearly going to have some cognitive impairment. That's why they do end up being able to force feed people because you're held to be incapable of making reasonable decisions after a period of starvation.

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.

Anti depressants do actually treat the depression though. They are taken to treat the illness. Feeding through a tube is treating the side effect of the illness (starvation/malnutrition) anorexia is a mental illness.

They are not equivalent.

@LemonMeringueThreePointOneFour

Please could someone who knows clarify something to me? Are images of very slim/thin models or, for example pop stars likely to trigger anorexia? I've always felt that seemed a bit simplistic, but happy to be corrected.

I don't know about triggering it, I think it's more complicated than that, in some cases it will play a part though. And they are certainly used by some to give motivation - I know some who kept a collection of those type of images specifically for that reason.

Look at nikki Grahame. They sedated her daily for a long time so they could tube feed her but it only prolonged things. People with anorexia can be sectioned and forced into tube feeding although they will try to pull it out or stop feeds. Nikki’s book is actually a good insight into anorexia in a young child (and pretty much how not to treat it!). Youtuber called Of Herbs and Alters has a lot of videos with her insight, she had anorexia but thankfully recovered but for a while swapped the addiction to starving herself to a drug addiction