To think we need to change how we treat Anorexia

[S3aH0use7337]

My dd has suffered from this disease since lockdown. It has had a catastrophic impact on her life. Part of the reason she has been ill for so long is that the traditional way of treatment relies on family therapy. My dd has autism and this style of approach with parents being in control just didn’t work for her and often doesn’t with autism. Research shows autism and Anorexia can often be linked. My DD’s Anorexia wasn’t picked apart and she wasn’t given any coping strategies that suited her or proper specialist support just FBT. CAMHS pulled back from FBT when it clearly wasn’t going to work but didn’t have any ideas of what else to do and just tried to make her focus on other things with the idea that real would make her suddenly decide to get well.🤔 No tools were given to do that .The anorexia got more and more imbedded . Because FBT is the default treatment they were too scared to take the bull by the horns and try anything else. Because beds in units were in very short supply she just ping ponged in and out of paed wards without specialist care and the disease was left to get more in control of her life. I saw so many other young people in the same situation with trauma and ptsd becoming common.

Under adult services she has tried a different style of treatment with some success. It’s hard though because she has been ill for so long. I don’t understand why it isn’t tried earlier under CAMHS.

In addition to this is the issue re how adult sufferers are accessing care. It’s shocking but the iller you get the less help you seem to get with some areas now discussing palliative care instead.I have added a link which explains the truly shocking state of play at the moment.

So AIBU in thinking the whole area needs a massive rethink starting with a look at the FBT or nothing approach for young children, links to autism and the shocking struggle to access treatment as adults?https://www.theguardian.com/commentisfree/2024/feb/25/illness-worsens-scandal-eating-disorder-treatment-england

I agree, I just don't know what... I think anorexia can stem from so many different sources/issues that a one size fits all approach just doesn't work, but I don't know what/how would work across so many different issues.

A bit of an odd/perhaps controversial one - I've had anorexia since I was 18. It started unintentionally with me losing weight because I had a horrific job which meant all I did was work and sleep. I started noticing I looked 'better' and other people would comment on my weight loss which fed my need for attention that I didn't realise I had at the time. People then started commenting on how skinny I was (not in a good way) but that just fed the attention I wanted. Then I felt like I had a 'skinny' image to maintain. Despite only eating one low calorie meal per day and a lot of days basically nothing and being underweight and having no period, I never got admitted or taken seriously by health professionals. Anyway, in the end I guess by not getting taken seriously by health professionals or anyone, one day I thought 'no one actually cares'. And if no one actually cares, why do I deprive myself of nice food etc. Weirdly the lack of attention and realising no matter what I did I wasn't getting it, seemed to partially resolve the issue. That being said, I am a control freak so I am still a bit underweight but I don't deprive myself of food or hyperfocus on my weight. The control aspect definitely won't go away without some form of help - the attention side did though by people not feeding into it. I have also heard the term 'tactical ignoring' by a family member who is in the NHS so I wonder if that's a lesser known technique they use but don't publicise...

We had exactly the same with CAMHS to begin with. My DD also doesn’t eat Yoghurts, custards, rice puddings and is pescatarian (commenced a few years before ED although we do now wonder if it’s all linked). It didn’t work and we had no support or empathy or even FB treatment for some time. DD now inpatient in ED unit and we are still trying to get to bottom of what therapy if any she is actually receiving now - she needs help with anxieties, homesickness as well as the ED. I don’t think you can just weight restore especially when she is still refusing to eat all meals. We are researching what else we might be able to do ourselves with her on visits. It’s all so heartbreaking.

My anorexia wasn’t fully successfully treated throughout my teens (started age 11) and the only thing that helped at all was a lovely counsellor who I saw originally through a charity and then privately.

As an adult I needed and wanted psychodynamic therapy, but couldn’t access it. I was dying and at the point of considering a feeding tube. There was one therapist for the area and the other therapists worked under him. He glanced at my file and said no - never met me, even though I said I was very willing.

I ended up doing my own therapy on myself - using psychodynamic techniques and basic ways to work out trauma - which worked. I’m still a bit weird with eating but I’m healthy and happy. However, I will always be disgusted that they could turn me down and I had to do it alone. (My actual psychiatrist who knew me believed it was the right therapy and thought I was a perfect candidate for it, so this refusal was on the word of one man.) The message I got from that really, was I wasn’t worth helping. Luckily, now I’ve reframed that to see it was him and not me in the wrong.

I agree FBT is not always helpful. I’m also ND and it was missed all the way through until adulthood. FBT for teenagers is set-up to be tricky really, as they are at a point where they’re seeking independence and need to be able to learn about themselves to get to the root cause.

Edited to add: To all lovely mums with dc with anorexia, don’t give up hope. I was one of those who people thought would never recover and it was deeply entrenched, but in the end I did find what worked for me and have two beautiful healthy children and a stable, happy life. Hoping all of your DC manage to find what works for them, even if that is not FBT.

@ChaosAndCrumbs thank you for your lovely message, it's great to hear from those down the line and know it is possible to recover. I feel it is for my dd, but we are going a longer different route perhaps! Thanks again.

Thankyou Chaos.❤️

@kittensinthekitchen I’m in tears reading your post as it’s so similar tommy DD and what we’ve been through and still going through.

If you ever want to PM me please do as no one who hasn’t been through this understands and I feel work is getting fed up with me and my outrageous request for (unpaid) time off to visit my daughter in hospital more than once a working week. I’m so exhausted by it all.

@S3aH0use7337 Have you ever looked into ARFID. Can be mistaken for Anorexia, and is definitely an eating disorder associated with Autism. Kids can slip from ARFID into AN as well.
Sorry I had no time to read the thread beyond 25/2 if I'm repeating advice.

www.facebook.com/ARFIDAwarenessUK

As an adult, I was (officially) diagnosed with anorexia a couple of days after a severe accident, where I broke my hip and shoulder. I was off my head on morphine and could barely understand what the psych doctors were saying to me. I almost felt like they were pressuring me into 'confessing'. The consultant from the ED clinic came along and started trying to blame all my issues on my Mum. Who's an absolute saint and has never done anything wrong.

I was watched 24 hours a day for 5 weeks and had to eat around 4000 calories a day. They said if I was in the unit I would not be allowed to walk, and would have to be moved in a wheelchair. This was while I was recovering from hip surgery so needed to move. It was all very distressing and I ended up sectioned. I felt like I was being treated like a child, not a 40- something woman.

It scared the crap out of me though. I'm too scared to go back to the outpatients ED unit in case they try and make me put on more weight or section me again. Luckily I have kept the weight on since that hospital admission but I totally lost faith in the treatment as it seemed to be just force feeding people.

Inpatient ED treatment is hard, really hard. I've been in a unit for four months now and I'm in my late forties. A lot here feels very humiliating, you lose control of so much. But I have no doubts it has saved my life.

I can't write anything detailed right now but I just wanted to say thank you to all who have posted about FBT not working for them. It didn't work for us. I think my whole family has PTSD from the experience. I have avoided all support networks etc as I was ashamed that as the parent/controller I had failed. I have also avoided reading all ED threads for the same reason.

This morning I have an appointment for me to talk to someone at 9.30 and as a result if reading this thread this morning I now feel optimistic that I can actually talk without being overwhelmed with shame and guilt and maybe even get some information about alternative treatments to try. Even if I have to pay I really don't care about the money.

Thank you all.

I saw a friends daughter suffer with it. Care was shocking. She ended up in a special home in the end after living with it for years and it getting worse.

Thank you so much for posting. I just wanted to say well done you for sorting out support for yourself.I have been having support for me and it is an absolute godsend. I know the trauma and damage FBT caused us as a family. My dd has only just been articulating it. It damaged my self esteem, our marriage and my relationship with my daughter. I’m only just beginning to get my self esteem back and the relationship my dd and I always should have had. I don’t blame the therapist as the treatment was foisted on her too with no other option.it was a massive waste of money that let Anorexia get more entrenched and has ended up costing the NHS so much more. Just forcing this and offering no other structured treatment when it clearly isn’t working (for years)is madness.