What treatment and recovery support might be offered for adult anorexia?

[Whatwouldyoudonow]

I'm wondering if anyone has any information they can share about the road to recovery as an adult. I've recently been diagnosed with anorexia which i've had for about 30 years but i've never been in hospital, my lowest bmi was 13.7 at 17 years old and I functioned fine at that weight, my bmi is 17 now. I'm curious to what treatment I may be offered and how it's possible to stop wanting to heavily restrict my calories and lose more weight. I want to be more like other people and not feel how I do but I also don't want to put weight on and still want to lose more which I was honest about at my eating disorders assessment last week. The lady I spoke to is going to call me back tomorrow after she's spoken to her supervisor about the best plan going forward for me. I just don't understand how anyone can change how I think, which may sound silly. I would really appreciate others sharing their experiences with me. Many thanks.

I had a relapse of anorexia around three years ago, (age 47) after being unwell as a preteen and teen. But even when 'well', I still think my eating was disordered.

I self referred to the community eating disorder team and was initially offered CBT-E. Which I started but really didn't get on with the therapist. She threatened to discharge me after three sessions as she said I wasn't engaging. I'm autistic and the CBT was really hard for me. I was then referred on to a different therapist who offered MANTRA therapy, but by then I'd started to become really quite unwell. I had about three months with her, but we couldn't do therapy as I wasn't well enough. She referred me for inpatient care, which was agreed, and I was offered a bed about two weeks later.

I spent seven months in an ED ward and weight restored (I had no choice!) although the therapy in hospital was not good and I can't say it fixed much of what was going on in my head. I was really worried that I'd be surrounded by much younger patients, but was surprised that there were people in there in their thirties and forties. Although I was the oldest!

I still see the ED community psychiatrist as I'm on an antipsychotic medication.
I can't say any of the treatment 'fixed' me. As I feel like I've had an eating disorder my whole life. But I continue to work with a private therapist to try and work with my ED thoughts and feelings.

I know how hard it is, when it's been a lifetime of anorexia and restricting and the thought of gaining weight is so scary. But I would definitely see what they offer you and give it a go. Good luck.

Thank you so much for taking the time to share your story. I wish you all the best for the future. It is so hard to recover from an eating disorder, especially when it's all youve ever known from being young.

I had a relapse as an adult following a bad break up and then pregnancy. I had talking therapy for four years, and I’ve been in recovery now for about nine years. That isn’t to say it’s all been easy, but my life is so different now and I’m a healthy weight and am free from the worst negative thoughts.

It’s still hard work sometimes when life is stressful, but I can’t tell you how wonderful life is now compared to before.

I hope you have a good therapist. Mine helped me see my life could be saved. Good luck - be kind to yourself. You can do this 🙌.

Thank you for your comment. Can you explain to me how your life is so much better now and how you coped with your body changing as you made steps to recovery? I hope it's not triggering for you, please don't respond if you would find it too difficult.

The lady at my assessment said she'd call me yesterday but still haven't heard from her, maybe i'm fine or just beyond help.

Thank you very much x

They start with therapy. Wait lists are long even after initial assessment.

it is hard going and I am not going to try and lie. I have never managed to have my thoughts changed. I can want to not live like this. Equally, I cannot and will not gain weight.

I think it can be too deeply entrenched. It can be all we have known. To have therapy try to deconstruct what feels like my entire being can feel punitive. Therapy on NHS was every two weeks and left me in a mess. Private therapy costs but can be more regular.

Caught in the dichotomy of not wanting to live like this, but not knowing or believing there is another way that doesn’t tell me my whole life is wrong.

@Whatwouldyoudonow I'd chase them up. I had to chase up my community team on numerous occasions in the sixth months before I was hospitalised. I completely understand that chasing up, in itself is stressful, especially when the eating disorder doesn't want you to, I totally get it.

My life is much less dark. I have more time! I can’t believe how much space all my obsessing took up. As I recovered I began to recognise the unhelpful thought patterns, and it was like being unlocked from chains.

I definitely acknowledge I still think about food, but it’s nothing like before. I think I consider what I eat in a mindful way now. I eat for lots of reasons, but it’s all on my terms. I hope that makes sense.

Weaning my children was a huge step forward for me. My eldest daughter heard my mum grapple with a menu choice dithering because one meal was more calorific than another and therefore making her consider something else, and she said “I’ve never heard someone not want to eat something because of calories before”. She is 13 and has a great relationship with food and her body image, and I’m so so proud of that. I try to be a good role model for them. I focus on being strong, rather than small. I also love myself for who I am, not seeing a value only in what I look like.

For me, therapy and exercise (not for weight loss but for the joy of being outdoors) saved me. I wish you all the best with your recovery 💐

No one is beyond help. Keep calling - you’re doing the best thing by seeking support.

I had an initial assessment and was offered guided self help through the NHS which was a zoom session for 30 minutes each fortnight I think it was and a I was to read a book they sent me. I found that quite useless.
they the put me on the wait list for weekly CBT sessions which after waiting about a year and a half I’m doing that now. I’m not sure about it. Don’t love the therapist. But we shall see.

I am currently listening to a podcast called recovered ish which I am enjoying.

I relate to this so much, I can't imagine being any different. I ,like you, don't want to live tis this forever but also don't want to gain weight. Thank you for sharing 💐

I thought about phoning but I can't bring myself to do it.

Well done for your recovery, it must have been a long and difficult process. Being so preoccupied with food and weight is so exhausting, it takes up so much time and energy. It sounds like you're being a really good role model for your children, maybe I haven't been for mine over the years regarding food. Thank you for taking the time to share your experience with me.

Thank you 💐

@Whatwouldyoudonow I know how really tough it is💐. But you took the first step in having the assessment, so that is progress in itself.
In my experience I think they probably will get back to you, just not in the time frame that they suggested they would.

I think the NHS need more money and resources put into eating disorders by the sound of it. A 30 minute zoom session every fortnight seems useless. I hope the CBT will be of some use to you as you continue on with it. I'm glad you're enjoying the podcast you're listening to, hopefully it helps.

Thank you 😊

I can really relate to this thread. I saw a private therapist from September before I was referred, and received a place at our adult eating disorder service in January (when I had to stop sessions with my private support). I have had ten sessions of SSCM therapy and have found it so frustrating. We agreed I should be discharged because I wasn’t making any progress (but sometimes progress is not losing more weight). Apparently I can only access therapy if I weight restore, but I am really struggling because I feel I need therapy to help me weight restore - it’s so chicken and egg, I can’t ‘just do it’. My sessions basically involved asking me how the week had been and weighing me and taking my blood pressure and heart rate. My weight was often recorded incorrectly too which was annoying. My stats are reasonably stable at least but I’d lost a kilo in the two weeks before I was discharged - so frustrating.

I was offered an intensive day care programme but it was six weeks long and too disruptive with work - so now I’m back to square one with no support. It feels like leaving me with a broken leg.

I do have private health cover through work but apparently any treatment requires weight restoration first. I have made some improvements but have basically lost 30kg, and managed to put 1kg back on. I do want to get better, but I’m scared of putting weight on, it feels impossible. I am fifty next year, and struggled in my early twenties with similar but had 25 years of total recovery. I’ve no idea where to go from here.

I realise I’m just talking about myself, but am frustrated as apparently it’s rigid thinking that means I have to weight restore before accessing therapy, but I am quite self-aware and have insight, I think I’d really benefit from more emotional support rather than just weights and measures.

It sounds like you're having a really tough time receiving the support you really need. Surely the therapy sessions are aimed at helping people with Anorexia weight restore. Why would you be expected to do it by yourself before seeking help, that seems to be a very strange thing to expect someone with this eating disorder to do. If we could do that without support we wouldn't need therapy etc.

I understand what you're saying i'm also scared of putting weight on. The intensive daycare programme may be what you need, is there no way at all that you could do it? 25 years fully recovered is amazing and if you've done it once you can do it again with the correct help.

Your last paragraph is spot on, you need the support the weight restore. Not to weight restore by yourself first. I think many of us are much more intelligent and aware if what's going on with our eating disorder than people may think.

I wish you all the best going forward and I really hope you can access some support that helps you along the road to recovery 💐

I received the phone call and told I will receive one to one therapy, it will be one session a week. There's a couple of months wait which is fine as I honestly expected much longer and it gives me time to get my head around it all. Hopefully it helps.

this is great news! Hard work, but the beginning of a different time for you.

Good luck with it, you will never regret getting better 🙌

Glad they got back to you @Whatwouldyoudonow.
I really hope it is helpful.

Thanks for replying - I do find the approach odd, apparently it’s in line with NICE guidelines but perhaps more suited to younger patients who have the support of parents etc to weight restore. If I manage to weight restore on my own, I won’t need therapy !!

I’m glad you have sessions planned, I hope they work better for you. I’d quite like to do something short and intensive - a couple of weeks or something less disruptive, I’ll do some research. I love my job and have worked hard to get to where I am so don’t want to take an extended amount of time off because whilst people might look supportive, I’m not sure they really would be.

For the time being I just try and take each day as it comes - I am trying to eat more ‘safe foods’ as I find expanding my range really hard but it’s very up and down, as I’m sure everybody on this board recognises.

@Resiliencerequired I wonder if giving the podcast recovered ish I mentioned up thread might be helpful?
it is done by a therapist and coach who has had an eating disorder and it has been mentioned in the last podcast she is doing an intensive program (I assume online) aimed at 30+ year olds. I thought I might look into it more but could be something you find helpful as well?

@Squiffy01, thanks, I’ll definitely take a look at that. I’m open to trying anything tbh. I do feel really ‘stuck’ I want to improve but when push comes to shove, I can’t actually implement changes on a practical basis, even if I understand the underlying psychology - it’s frustrating ! I need some tough love !

I think that's why inpatient care worked for me to weight restore. I really had no choice than comply, had I not, I would have been sectioned (I saw that happen to other patients). But it's a brutal regime of three meals, three snacks a day, supervision after meals and initially a loss of all control. But at the time I was unable to implement changes at home and keep myself safe.
It did save my life, but it's just a shame that weight restoration is only half the battle. Tackling what's going on in the brain is really tough, but necessary for recovery.