Adult eating disorders support

[thesootherfairy]

Hi
Was inspired by the teen thread. Looks really supportive and was wondering if anyone else would like an adult support thread?

I'm 47. Have young pre-teen DC, a DH and a family cat. I work full time self employed. But I've had anorexia since I was 12. Had no help (not well known about back then so no help offered). Recently been diagnosed with anorexia.

Now face a 2 year wait for treatment.

And you?

There's no real route cause for me either other than the initial weight loss. There was a cause for that, but no reason to keep going. Not that it even feels like it's on purpose, I don't count calories or anything, just don't eat quite enough.

I also use bingeing and purging as a stress buster, so the illness has truly woven itself into me. Bingeing started when I had been restricting for years and my body "fought back" with a voracious appetite, so, sadly, giving in to the urge/impulse to feels good... Aaaand I have the "undo button", so "no harm done" (while I am wrecking my body and hemorrhaging money).

It just goes to show that the NHS "one size fits all" therapy can't possibly help all of us, as we seem to have such different reasons for restricting, bingeing and purging...

I'm a single parent on ten quid an hour, but if I was on a decent income I'd get some help privately. I don't want a two tier health system but then I don't agree with grammar schools and my child attends one, you do what you have to do.

My only option is to go back to my GP or self refer to the ED clinic if my bmi drops below 17.5 in indoor clothing, but then I don't want to let that happen, so it's get better on my own, or stay in limbo I guess.

I felt like an imposter at the clinic as the only thing really wrong was my bmi so I don't think I want to go back. I mean we had takeaway last night (half curry, half rice, half naan, two onion bhajis), bmi 17.4 this morning.

@Hellotheresweet
I've been offered individual therapy by NHS duration 9 to 12 months. There were choices between CBT emotionally focused therapy and psycho dynamic therapy. That's what they offer here.
The lady I met immediately wanted me to divulge deeply personal and painful information regarding why and what the ED is there.then after 4 meetings she had enough information and I now have to wait on the list. Very painful experience.
This is my problem with all of this. Why create a massive gaping wound and then leave you. Why not just wait until therapy is available.

I'm sorry to hear that you had a painful experience @thesootherfairy. They only offer CBT here. I was given questionnaires to fill out then had an hour long assessment followed by a short phone call every three months. It shouldn't be such a postcode lottery should it?

@kowari @Luckoftheirish
You no root cause. That's what I used to think. It only in recent years that I've realised what I use the ED to cover up.
There will be something you are just not able to see it.
And this is the problem with CBT type therapy you don't get to the problem which is maintaining the ED. So all you get is a temporary improvement and when cbt ends you'll be back to square one before long or eventually anyway.

@Luckoftheirish that therapist sounds terrible!! She's clearly made your ED worse. Wow.

I find it impossible to speak about my ED. But I did get more information and a little push/help from Beat. They do this text helpline. It's online and someone writes back to you. I had questions about the NHS system
And possible treatment etc. Just texting anonymously with someone gave me enough strength to fill out an EDQ score thing I found online and email it to my GP. It's so bad I couldn't even talk to her about it (and she's nice).

@kowari I don't think you should rule out getting help. They offer therapy for ednos which doesn't involve having weight below 17.5 BMI. So why would your current v low weight stop you?

@kowari sorry to hear that. That's a bit useless.
I've done some googling.
Apparently there are what's known as "national centres for eating disorders". Mostly in London. These are places all GPs can refer into regardless of where you live.
If you can get your GP on side you could get onto one of these for outpatient treatment. I'm sure the wait is long but they have every treatment going.
I realise that means you'll have to fight for treatment. Which your ED may not allow you to do.

I'm a bit shocked there are so many of us. I'm really shocked by the lack of treatment. And shocked by the very strange distribution of treatment by area where some get top notch service and others get nothing and moreover that the criteria for treatment differs area to area. That's not right. None of it is.

They offer therapy for ednos which doesn't involve having weight below 17.5 BMI. So why would your current v low weight stop you? Not here. It isn't just me, a friend of a friend couldn't access help until her bmi was low enough, she had to turn to counselling through a charity service. My bloods are normal and periods regular. I don't have any risky behaviours other than not eating enough to maintain a healthy weight. I don't tick their boxes.

The national centre for eating disorders isn't free though is it?

@kowari goodness!! That's shocking!!
That's not NICE guidelines at all. You can definitely complain to your CCG as they may not be aware of this.

It's not The national centre - that's private.

They are the nhs national centres. Such as The Maudsley in south London and Vincent Square in west London.
There are more but I've not googled them. There are several in Scotland as well.

If you look at the maudsley. They accept GP referrals from anywhere in the UK.

You need your GP to refer. And your GP may need to raise a funding request although I don't know that for sure.

Here

www.nice.org.uk/guidance/ng69/ifp/chapter/Eating-disorders-the-care-you-should-expect

Thanks but just a phone call from the school makes me anxious, I don't want to make a complaint.

@kowari
I fully understand!! I'm not particularly good with confrontation either. I can do it via email or letter but over the phone would be a struggle.

Would you consider writing to the Ed service and politely asking them why what they're offering you is so different to NICE guidelines? You may get answers and perhaps more help.

I realise there is a big part of you that doesn't want help (the Ed) so that makes asking for it and fighting for it an impossible task
I'm in a similar position here. Although I would consider having a moan via email. Couldn't do it in person or over the phone tho.

To all of you here and anyone reading who hasn't posted yet: feel free to posts about all of your moans. Whether it is the Ed itself, the treatment, lack of treatment, treatment which didn't work, anything which makes your Ed worse or better. Whatever it is, pls come and moan!! I fully intend to.

All of us have some things in common; age, issues with treatment or lack of, Illness concealed behind our full lovely looking lives and families, that we really are struggling and need help. And most of all that none of us really have anyone to talk to about this.
Well now you do - we are all here together.
And to anyone who is reading but not posted yet; join us if you need to vent.

Hoping I can join. No diagnosis. I was seen by a GP when I was 12 for low weight (referred via school nurse). I have quite high anxiety about being seen by health professionals, so I gained enough weight that I didn't have to go again.

I've been restricting food ever since (I'm now 38). I eat 1 meal a day (usually evening) and I don't snack, I keep my BMI at exactly the same number (I don't want to write that here, but it's always the yellow area on the NHS bmi chart), so that I'm happy enough with what I weigh and others don't comment. Occasionally I 'fall off the wagon' and lose weight to make myself feel better. I put it back on if someone comments in case I have to see a doctor. I can control exactly what I want to weigh. I like having this control, I'm not unhappy about it.

I'm an intelligent grown adult with plenty of rational thinking, this area of my life is bonkers, I know it's not normal, but it doesn't feel like an issue to me. I justify it, because it's basically the same as anyone else who wants to maintain their weight by calorie counting and watching what they eat.

Not sure what I'm expecting from this, but hoping that someone might understand, it doesn't affect my overall life negatively, but it's always there if that makes sense?

I'm finding this thread really interesting -- how EDs have underlying issues, not just people don't know how to eat. Also how many people may not be eating and it just doesn't show. They just look thin but not bony so no one listens to them.

I was undiagnosed anorexic in my late teens early twennties. I had a few years of subsisting on maybe on snack a day. I didn't menstruate and barely needed the toilet! But somehow my weight never went below 17.5 bmi so no one ever noticed except to compliment me on my appearance. I tried to talk to DM about it but she dismissed me. I believe she may have been jealous I was thin while she struggled with weight.

Now in my forties I have the opposite problem -- I cannot stop eating! I started stuffing my face when I felt abandoned in my marriage and did it enough to make my stomach stretch very big I think and actually train it to be always expecting food. Ironically I don't remember being hungry during the years I didn't eat much....

If it was as easy as 'just eat this' none of us would be on this thread. I realize my early not-eating was probably due to childhood abuse and my over-eating is a result of marital denial of affection/emotional abuse.

I don't think much help is given to anyone until they are basically on death's door, whether over or under eating. Being told to eat more or eat less is similar to telling someone with OCD 'just stop doing that so much!'

@user8888 @TargaryenDragon welcome. 

@user8888 exactly. It is just like telling someone with ocd, don't do that so much.

And again the total lack of understanding in some places (not all) about the weight criteria being defective.

If you look at the teen Ed support thread here for parents. You'll see plenty of their DDs have anorexia diagnosed and are in hospital but BMIs over 19. So some services are getting the point.

Sadly not all though.

And yes for those of us who are older, you'll mostly get a load of referrals for test if you show up with anorexia symptoms but don't tell your GP about it. This is what happened in my case. I've seen everyone from rheumatology, to gastro, to neuro to orthopaedics and physio etc over the past 18 months.

At no point did anyone ask about my eating or weight. Or the 20 GP visits over the last 5 years inc a 2 year period where my weight was quite low and much lower than it is now.
No one asked. I tried to tell one Gp who cut me off mid sentence and said "that's enough for today" and it was never mentioned again. That was 4 years ago.

Essentially no one wants to know or help.

I have not looked at the teen thread -- they have wonderful parents then that are noticing them suffering and trying to help them. That's good news at least.

@user8888 yes they do have absolutely wonderful parents. I've felt like posting to tell them that actually.

They seem very caring parents with patience of saints.

As a teen I was just told to stop being so stupid about food and my body, as well as actively praised for my sport addiction. Not ideal.

Have had a difficult evening - GAD causing dread about tomorrow (finding work very, very hard, right now).

My parents supported me by buying the food I would eat. Any attempt to control me would have been met with strong opposition. They did the best they could.

I was a tall and large framed teenager and managed to keep a reasonable bmi of 18-21 in my teens and early 20s using a combination of purging and exercise.

After I had my kids though my weight ballooned and I couldn't stop eating and I am disgusted by the weight gain. The only way I can lose weight now is by restricting to one meal a day or purging. It consumes a lot of my time and energy. A 'normal' eating pattern where I could maintain a healthy weight would be so much easier.
I hope all the people on this thread manage to find a comfortable way of managing their weight and eating patterns.

It's amazing how many people are piling into this thread with their stories (a great thing). I thought I was alone.
Undiagnosed anorexic from 14-18. Then bulimic from then to about 28. After kids - managed to stop bulimia (struggle to even type the word). Now...just restrict in crazy ways. Can't eat a proper meal as panic at the feeling of fullness and worry about it igniting the urge to purge. So graze during the day and my kids never see me sit with them for a proper meal. Really bad example set. But I don't know how to change it.
I don't want to change and yet I do.
I don't want my daughter's modelling their eating habits on mine.
But, I feel like I have achieved an equilibrium with this method for myself. Don't ever purge, don't ever succumb to temptation, but also never normal sadly.
And it's hard to maintain.
Had CbT for anxiety issues in tandem with citlaopram. Found the citalopram no good as just made me yawn all the time and have no get up.snd go. Normally I'm very motivated.
The CBT was interesting. I had s make nurse...which I was reluctant to engage with. But he was excellent. He ditched most if the CBT stuff and we just talked.
I realised I could own this issue instead of beating myself up about it. And feeling the guilt. Take back control. Make the decisions.
The decision at the moment is to run with the middle ground. Haven't purged for nearly 20 yrs. But have massively restricted and it fills every waking moment which isn't healthy.
Really feeling a sense of hope and community reading everyone else's experiences.
It's a lonely place.

Welcome @user2234 @MyFriendJohn
Nice to "meet" you. Sorry you find yourselves here.

It's interesting to hear your experiences.

* I don't want my daughter's modelling their eating habits on mine.*

NHS treatment was super helpful about this.
This was my driving motivation to start having a proper (low fat, low cal but still...) ready meal every single night.
And she’s noticed
One of my proudest moments is her saying last month “I love you eating dinner with us mum”.

Yes I cook something different for the children

Yes I am still grossly underweight and look awful (adding the meal and other bits and pieces actually made me lose weight. It’s so strange but I think it’s because by eating “proper” food I reduced my vast vast intake of salad and steamed veg. And so... lost weight. But I’m trying)

BUT. Every. Damn. Night- I sit down with my children and have a proper full ready meal and veg with them. And it feels so good.

NHS treatment is it great. It’s limited and it doesn’t delve in to the roots and it’s pitched towards people ignorant about nutrition and a great deal younger than us.

BUT

It worked on this level (for me)
It shines a magnifying glass on your ED. Walking in to the clinic, being weighed etc. It’s like it’s screaming at you - you have reached such a serious point with this disorder you are actually HERE.
It’s the first time I spoke freely about it. Yes I had an ED. Yes yes yes. There’s absolutely no escaping it. No sugarcoating it.

And yes, whilst at our ripe old ages we know about good fats etc and what we should be doing, amongst all the fluff - there are some nuggets of useful and practical information.

NHS treatment looks at the NOW and the future. And that’s what I needed. It sure as heck didn’t cure me and physically I’m in a worse position than I was during treatment, but it made me realise I do have a problem.
And I’m “on it”
And I’m so much happier as a result. Mentally.