Slack group question answers: If you’ve had treatment for your ED, what do you find has been most helpful? 1


This week I was totally swamped and also finished the first draft of my next book (a complete recovery guide for adults with Anorexia). It’s over 100,000 words and my head is swimming. I’m cheating this week by not writing a blog and instead — with the permission of the participants — am publishing a section of the conversation that was had yesterday on the Slack group.

I did not participate in this discussion at all, and only got around to reading it hours after it had happened, but I found the replies to the question on what eating disorder treatments had been helpful interesting. This is only a snippet of the conversation, but it is a snippet from a group of adults who are in active recovery right now — many of whom have been in treatment for years. I think that discussions like this are productive in that they help people understand that it was not them who failed treatment. That other people “failed” treatment too, and that therefore, it is probably the treatment that is the failure. This allows people to believe that they can succeed. That is gold.

Always listening. Always learning. Always improving.

 


Good morning @channel …Today’s question – if you’ve had treatment for your ED (or POS more accurately), what do you find has been most helpful? CBT, DBT, psychotherapy, art therapy, drama therapy (the list goes on). OR…if you haven’t had official treatment for whatever reason, do you think this has been a help or a hindrance? I had all the treatment available (on numerous occasions) but things only got better when I desperately wanted it to (desperately being the key word)- and in reality, all it is taking is “food therapy” i.e. eating lots, gaining weight and this forum has also been of huge support I guess (however I wouldn’t class it as “treatment”). Thoughts…

Having had CBT and not seen much benefit, I found ACT very helpful. It’s mindfulness-based and so gave me strategies for reducing the anxiety that can accompany recovery. And, while it’s not always easy in practice, it helped me be aware of my body’s changes and sensations from an “observer” standpoint… The best analogy my therapist gave (though I’m sure it wasn’t hers, so others of you may be familiar with it) was: you’re on a bus and the passengers (read ED) are kicking off big time because you’re not going where they want. You can’t chuck them off the bus, but you’re safe in the driver’s cab and you’re in control of where the bus is going. I guess that sums up the acceptance (don’t struggle against the POS voice because it can exhaust you) and commitment (but don’t worry because you’re focused on where you’re going and when POS kicks off, all you have to do is take steps in that direction).

CBT in england seems to be the gold standard but as you said, I never found it beneficial. It was almost just writing down what I already knew/ was common sense. I might look in to ACT although I am starting more official mindfulness work with my psychologist on Friday and that’s not just for the POS

For me, I have been an outpatient at my unit, earlier on being given a trial cbt but it simply didn’t touch the sides because (as I know now) I just was too far in negative energy deficit and too low to be able to take it on board. It’s been a patient therapist and nutritionist then after CBT failed it was a nutritionist, @tabs and Slack till now I also have had CAT alongside my nutritionist (cognitive analytical therapy) that’s really been a way of processing daily anxieties with coping strategies. Nothing out of the ordinary but patience and eating and re reading literature, Slack and repeating this… mindfulness really has been hard and weird but alongside gentle yoga, it’s also been really therapeutic. I’ve written a journal daily and I avoid negative triggers in people, etc so apping a close few allies but then just eating and eating and trying opportunities and building confidence.
Simple…? !!! Well, it’s slow and now I believe, when something clicks, taking extra opportunities seem easier at times. But then it’s been saying mantras every day like ‘I choose recovery’ even when that’s bloody hard to say, and repeating opportunities

The dietician I was sent to on the NHS was definitely counterproductive (telling me not to eat too much of certain things etc, which freaked me out and really set me back). The most helpful has been the counsellor and nurse at my workplace…not explicitly CBT although we have talked about some techniques. The main thing is that they’ve kept me on track with trying to keep fighting when I no longer have support for my physical health (my GP happy to dismiss me from regular check-ups now that I’m “only slightly underweight” according to BMI, despite the fact that my brain has definitely not caught up). But also drawing has really helped me…just silly cartoons/sketches that I’ve done for myself that help me to visualise my eating disorder as separate from me

I’m going to add something…do you thing official treatment has done more harm or more good? For me, I would say it has been almost neutral. Maybe saving my life physically on a couple of occasions/ admissions, but in terms of real recovery and the long term, it has never done anything useful for me (plus if I were speaking to somebody who had never had treatment before, I would want them to keep independent, as I don’t think it is helpful being surrounded by others with AN. The AN feeds off it and unless you’ve got a very strong personality, gives it strength).

CBT ! art therapy.pointless……..for some unknown reason in the 1980’s we were sent to a woodworking session once a week,that was fab,but i think i just enjoyed making all sorts from wood, from jigsaws to toys to furniture

The other addition is having the treatment from somebody that has “been there and done that” (oh and come out the other side.) One of the therapists in my local nhs team was a former patient and her input was invaluable but I do think (even though it’s not about weight) that for patients to trust a previously unwell therapist, their weight must be more than the minimum healthy otherwise AN feeds of scepticism- thinking they are “faking recovery”- never getting the right time with them to see whether their behaviour reflects true recovery

Yes! Totally agree. I had a “recovered” anorexic therapist who was still strikingly thin, and I terminated therapy immediately. As for myself, I’m becoming a therapist and am well aware that I must stay WR and recovered so I can maintain legitimacy with my clients. The therapeutic bond is the most powerful agent of change…. that and peer and family support.

God yes WHY WHY Do they allow skinny therapists,we need the BOUNCEY energised healthy looking type….but i love seeing REAL recovered sufferers, when i was at my lowest lowest i craved seeing someone who had emerged from the whole pit of being in the eating disorder hole

I disagree. We shouldn’t be skinny shaming or discriminating based on body type. Different if they are unwell, however some people are skinny and that doesn’t detract from their ability to do a job.

Official (NHS) therapy did more harm than good, for sure. I’m sure I’ve banged on about it before, but basically they made me ‘stay the same’, telling me to keep doing exactly what I was doing (restricting and overexercising) until they had a place for me on their ‘outpatient pathway’. Disastrous, I had a really rapid decline. Since then I have been at best ‘underwhelmed’ and at worst ‘devastated’ by their treatment – they follow such ridiculously strict guidelines on how to treat people, assuming that everyone is the same. Under this unit I’m under the care of a clinical psychiatrist (who is, by all accounts, the dizziest person I’ve ever met and often comes in with the wrong notes, forgets my name, etc.) and the rest of her team: I’ve seen a dietician (dreadful, and gave up on me after a few sessions), a clinical psychologist (I share the view of @tabs on psychotherapy…I wasted so many hours of my time trying to identify some mythical event in my childhood, when all I needed to do was start eating!), and now I’m been moved to the eloquently named ‘severe and enduring pathway’, which makes me feel like they’ve all decided I’m beyond hope and now they just have to keep me alive rather than actively try to make me recover. I now see a ‘specialist’ nurse, and she actually let me choose my target BMI, saying I don’t even have to gain if I don’t want to – she just wants to ‘help me manage my condition’. Naturally, when I first started seeing her my AN chose a BMI that is below the commonly accepted ‘healthy’, and my nurse said this was OK! I’ve now reached this and want to move on, but I just cannot get her to support me in eating and gaining…she just wants to over-analyse food groups and eating patterns and behaviours rather than my belief that if I just EAT more of whatever whenever, my brain will heal and I will then start to be able to think more clearly about behaviours. In a nutshell, my treatment team want me to do things ‘their’ way – they frequently tell me off for going away and doing things ‘my way’, even if my way results in weight gain! How absurd is that?!

And in terms of specific types of therapyl: I paid for a private ACT session once and it was great – it was via e-mail so I could write not speak (prefer that!) and do it in my own time; I’ve tried CBT in a variety of places (going back historically, before my current treatment, when I lived in different locations) was always unhelpful – always felt like ‘well, duh, I know what I’m SUPPOSED to do, I just can’t bloody do it’; I paid for a few sessions of this weird therapy called ‘transactional analysis’ that I really didn’t click with – he actively tried to implant a belief in me that I’d got damaging with my parents (I truly don’t!) and that I have always been ‘scared of growing up AND scared of staying a child’…wha?! Self-help has, by far, been the best help to me. Through books, blogs, websites, research papers and podcasts I have gradually built up an understanding of eating disorders (and continue to do so). And I’m not being a suck-up here, but I truly believe Tabitha’s work and this forum to be the most influential form of self-help yet. It’s finally clicked – that food and rest is medicine, as this makes your mind heal and the ED thoughts magically start to evaporate.

argh I’m sorry you’ve had such a bad experience with health care professionals! There just seems to be such a lack of specialist understanding, and an institutional fear of weight gain that results in very low weights being seen as acceptable (I’m know I’m not the only person who plucked up the courage to seek help from a GP only to be told that they weren’t underweight enough for professional help, with the obvious result that next time I sought medical assistance I very definitely was). But also totally identify with the uselessness of therapies that try to look for the root cause, particularly on childhood…of course lots of people have had horrible experiences in the past that have had an impact on their mental health, but as someone who was really fortunate in their upbringing and family support, having a therapist desperately searching for childhood trauma just made me feel guilty for being ill when I’ve been otherwise so fortunate in life!

 “Scared of growing up” – they really do wheel out every cliche in the book. That and the ol’ “Your life was out of control so you chose the one thing you could control” chestnut. So over- and mis-used. Your experience reminded me of the two enforced therapy sessions I had when I was briefly in IP. The therapist told me that “people with anorexia get obsessed with details and can’t see the big picture” – and made me complete a ‘thinking styles’ questionnaire. My result, according to that particular questionnaire, was that I was a balanced thinker. At my next session, she opened with the reminder: “Now, do you remember last time, we established you get obsessed with details?” Honestly, this thread has been so cathartic – we all need therapy to recover from therapists! In fact perhaps that’s their game – to keep the business going?!

Hi everyone it’s great reading all your posts. I’ve probably had the worst week since starting treatment if you can call it that! As @tabs would call it I’m experiencing clusterfuck I think. I’ve cried all day everyday for the past week, haven’t left my flat, had a shower or brushed my teeth yuck 🤢! I feel at my lowest ebb. I managed to get up shower and drag myself to see my ED nurse today, I could barley speak for crying and all she could say was that I’m now a ‘normal’ weight and so I don’t have to follow a food plan or gain any more weight! My ED voice is screaming at me I’m doing the hard work but I don’t feel anywhere near normal. I’m so glad I have you guys and all the information and support from AEDRA as right now the realisation has hit me that no one is going to help me fight this it is down to me. Right now I’m exhausted and just want to go to sleep forever as there seems like no end in sight. I’m supposedly weight restored but feel worse mentally than I did a the beginning of this process. As far as treatment goes I’ve attended a steps for change programme, 12 week group sessions mainly on food and nutrition and now attending another group to help stop excessive exercise. I’be been on a waiting list to see a psychotherapist since December to try and help deal with past trauma, but really the only progress I’ve made has been through support from Tabitha, I don’t know where I’d be without this support. Anyway I’ve rambled on for far too long, sorry guys. I’m not sure any of this is relevant for the blog @tabs, but happy for it to be used. Thanks again everyone for being here xx 

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About Tabitha Farrar

I work as Head of Marketing for a software startup in Boulder. As a recovered Anorexia sufferer, I advocate for proper understanding of eating disorders in my spare time. On that note, I wrote a book about my own journey into eating again called Love Fat.


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One thought on “Slack group question answers: If you’ve had treatment for your ED, what do you find has been most helpful?

  • Amanda

    I am so sorry so many of you have had such horrible experiences. I can’t believe the things some of the professionals said to you all. Incompetent egits!! I think it is really sad that there are ED professionals who are afraid to let AN patients eat above and beyond their meal plan and/or gain weight too fast. I have only been in 1 residential program for AN. It was last year and overall it was a good experience but the comparison thing (so common with AN) got really bad a couple of times. I hate that I wanted to be as sick as another patient. How sad is that?! I doubt a cancer patient would never wish she was as sick as another person with cancer. Anyway, I ended up leaving too early b/c of work and I have relapsed big time. I am trying to do recovery on my own now but the threat of going back to residential is looming. Its like I get motivated and do well for a little while but then I lose steam and slip up. Maybe it is the energy deficit thing- can someone explain again what exactly happens with this?
    This weekend has not been good. I have struggled with getting 3 meals in each day- forget about snacks. Today I made the mistake of weighing myself, expecting to have lost weight (when I am supposed to be gaining) since I have been more active cleaning, organizing, and packing this weekend. My husband and I are going to be moving in September and we had to get the house ready for pics and to show. I am curious: What are y’all’s thoughts on weighing yourselves?
    I am thinking I need to get more involved with the Slack online support group and maybe take advantage of the services Tabitha offers. I know I need support and I would love any feedback from you all. Thanks!