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?

@CousinLucy I don't know if my employer knows of my disorder.
I have worked remotely since I was hired (main office is on the other side of the world and most of us are remote workers).

We do meet at conferences and other meetings and the ones in the UK meet more regularly.

It's a professional academic job; we are all mature and respectful. I suspect they have noticed strange behaviours (discomfort around food, a need to exercise), but they would never be so rude as to say anything. As we all know, unless you become very, very unwell, day to day life can continue (as exhausting most physically and emotionally as it might be).

I did open up to two very close colleagues in my previous job, as I was really struggling and stayed in my conference accommodation sleeping and crying rather than attending the meeting. They knew I had gone through a very difficult divorce and I told them I had been struggling, and that being away from home and essentially having all this time to myself 'allowed' me to fall apart. I did tell them I was having some eating issues and I was getting help, that I was OK to be left alone.

I have absolutely never been discriminated against.

@TheOrigRights

Is it evident that you are “suffering”?

My issue is that I have a very low BMI and look... bloody awful.

So I am acutely aware of colleagues and clients “looking” at me, sometimes concerned and sometimes... “goodness she’s skinny!” Look and it makes me feel so self conscious.

Anyone relate to that?

@TheOrigRights thank you for putting my mind at rest. I am struggling at the moment and a colleague has told my boss 🙄 The thing is, I feel that I don't have the right to 'struggle' at the moment because my BMI is good. I don't have anything to lose though. But they are talking about giving me an extended lunch time and somewhere safe to eat so I don't fully relapse. They are being very caring. I hope genuinely.

I'm sorry to hear that you had a difficult divorce and enough alone time to fall apart. The thing is, right now I wish I did because it was be easier than confronting it! How stupid is that!!!

Thank you for replying to me 💕

I’ve got BED and totally relate to the stories here. I hold down a senior role, have a husband and DC, beautiful home, lots of friends, disposable income, from the outside I look like a successful human being but there is this bit of my life that is utterly bonkers and it’s so basic - I’m unable to feed myself properly, that it always makes me feel like a total failure.

I wish I was addicted to drugs or booze or cigarettes because I’d just stop but you have to eat for the rest of your life. It’s like smoking one cigarette everyday and that is it, dicing with death.

At the moment I consider myself “in recovery” i don’t think I will “recover” I suspect that I’m going to be this way for the rest of my life - like living with a chronic illness.

A few years ago I thought I had “recovered” and it was wonderful, I had a normal weight, I exercised and most importantly I had turned off “the urge” I did this by reading “brain over binge” by Kathryn Hansen who had recovered from bulimia.

She basically says that we binge to turn off “the urge” and the urge is created by repeated binging in response to “the urge”

This made real sense to me as I didn’t think I was dealing with any trauma. There wasn’t anything to “unpick” which lots of eating disorder therapy seems to focus on. It was just a really destructive habit that had got out of hand.

She says to start turning it all off you have to separate yourself from “the urge” and regarding it as neurological junk. Eventually your brain makes new neural paths.

As I said I relapsed after about 12 months and after all my work got stuck in a binge cycle again. Looking back I think this is because I joined SlimmingWorld to help with the weight loss and while this helped at the start (my bmi was ridiculous and I really struggled with portions and nutrition so needed some “diet” help) as I got closer to target I cut calories too far.

This time I’m not dieting but focusing on feeding myself well. It’s a tricky balance after years of eating badly and I’m working on the neurological junk element but I think this will literally be a life’s work.

to everyone. It’s so so hard.

@CousinLucy @Salsass82 @Allmyarseandpeggymartin
Welcome. 🤗

@CousinLucy dependent on which cut off scale you look at, I'm either just underweight or not underweight. I've still been diagnosed with anorexia and being treated for it.

I have been very underweight for very long periods of time and in the last summer lost a huge amount of weight really fast which is what triggered the referral despite not being under weight.

Having spent most of my teen and adult life really underweight, I can honestly say that without treatment, the thoughts and emotions are the same irrespective of weight. Ie I feel the same about weight and eating and wanting to lose weight, no matter what my actual weight is.
When my weight is closer to normal, I actually feel worse in my head and when we my weight low I feel much calmer.

So the problem with using BMI as an indicator is that it's not relevant to the illness in my head. Using BMI as the indicator is literally suggesting anorexia is purely metabolic and physical and not a mental illness.

This being the problem with services. They've not all caught up with the reality of anorexia and especially not those of us who have lived long term with it because when we were teens it wasn't well known, no treatment offered and in my case as become a chronic lifelong illness that I have not had treatment for until now because I was completely ignored by the NHS.

I've got GP notes on my medical records from the late 1990s, stating "BMI 13, a bit low but looks ok". I was suffering from severe anorexia and could
Barely walk and that GP had to help me up from the chair I was sitting in. No treatment or help. Miracle I'm
Still alive.

So weight is irrelevant. Anorexia is a mental illness.

I hope everyone here gets the treatment they need and soon! The waiting lists are so long for adults as there are no set timescales which is a joke.

@thesootherfairy It's very much been a metabolic illness for me, much moreso that the mental illness side of it. Both times it's been initially triggered by weight loss. If I eat more and gain weight then it gets easier. I'm at a BMI of 19 now and doing heaps better than even when I was maintaining at a BMI of 18, and I thought I was fine then. So I don't know if we all just have varying experiences or else if I've never had anorexia? But if it's not anorexia then what else is it?

I've found recent research like this to be interesting.Genetic study reveals metabolic origins of anorexia

Hi @kowari
That's really interesting. I do find once my weight gets below a certain point the illness escalates but in my head I feel much better.

Sadly it doesn't stop with weight gain.

Article is very interesting

Has anyone requested a f2f appt with their gp regarding their ED? I am massively struggling with finding the right words on the phone. I stupidly denied all lax/medication usage & I'm now regretting my life. Body language says a lot which can't be picked up on over the phone.

@thesootherfairy really pleased things are moving forward for you. Knowing you have at least a year of therapy must help you feel as though you have time to recover.

@cousinlucy my workplace know about my ED and have been very supportive but no practical changes have been made to my working day. I think slowly but surely mental health conditions are becoming less stigmatised in the work place.

My ED was initially triggered by an unintentional weight loss. The article is interesting.

@Bubblemonkey if you can't get a face to face appointment, does your surgery do e - consult? You could write it down on the form so that the Dr is already aware. What did they say last time you spoke to them?

@Rustnot I've got an assessment with iapt on wednesday but we're not optimistic it'll be any good, but the gp said there's somewhere else she can refer me to if/when they say I'm too complex. do doctors even read the whole econsult things? I sorta chickened out with detail on the first one I sent in.

Yes I don't know how specialist IAPT is. In my area it offers CBT and nothing else, but I know it's not the same everywhere.

I have no idea if they read them all, good point! But if it's on there you have the option to say, I'm struggling to explain everything, please can you have a look at the e-consult.

@Rustnot thank you
Yes it is. I am really really hoping it works. Also quite scared.

@Bubblemonkey I tried IAPT but they wouldn't offer CBT due to the ED. Said I was too complicated for them and their service was only 4 sessions. IAPT can refer on to other services or sign post to others.

It shouldn't be this hard to access help. It makes me sad that so many people struggle.

@thesootherfairy thank you for your reply. I am feeling very confused right now. I am restricting but always eating dinner in the evening with family. The children see me eat every evening. I'm feeling confused because I'm an adult and I make my decisions myself. Loads of adults do intermittent fasting... Is my behaviour any different? Lots of people in my profession struggle to find the time to eat at work. Why am I any different? If I was obviously underweight I could fathom it. I'm feeling confused. Nothing seems clear to me. But I suppose I don't need a GP if I am in the situation I'm in.

Hi all,

Thank you for being so welcoming. It’s so useful to read your stories. It surprises me that there are so many similarities. It’s all disordered isn’t it regardless of over or under eating. That thought really helps me.

How did everyone do over Easter? I’m really pleased that I had an “indulgent day” followed by no bingeing. Small steps

Hi, I’m new to this board but sadly not to ed’s. I’ve been ill since 16 and now 36. I’ve not seen any one medical (was seeing gp) for over a year. I feel I need to see someone but don’t feel worthy, particularly in a pandemic. Previous experiences haven’t been great (gp has always been good but Ed service has been mixed). I guess ultimately I don’t want to be told I’m not thin enough. To be honest I’ve been hit my the news of Nikki Grahame’s death. I think a lot f people with Ed’s (myself included) are of the thinking that death is only something that happens to other people and that I will never get that ill. I guess I’m just scared really.

Welcome @AtleastitsnotMonday
Sorry to hear.
I've also suffered for decades but this is my first time in treatment.

Understand what you mean about the news. It stuck me as well. It is really scary. I've been telling myself that I'm fine and perhaps I don't need any help. Reality is different, isn't it.

Could you consider going to your GP again and asking for help? Is there a self referral option in your area?
Or could you go via IAPT? When I spoke to IAPT (I was already waiting for Ed service on their list and the lady I saw monthly told me to go to IAPT for therapy whilst I waited 😒 daft and confusing if you read my other posts you'll see) and IAPT couldn't help due to the Ed but offered to refer me back to Ed service. I was bounced around a bit.

So could you contact IAPT and tell them you want counselling for an Ed? Perhaps they'll refer you?

It's so tough when help is so hard to access.

Or if you're not ready, speak to Beat and see if that gets you to the point of feeling able to ask your GP?

Anyone else feeling scared after the Nikki Graham news? I am.

Thank you for your reply. I’m pleased you’ve accessed some treatment. I think I just need to stop assuming I’m not I’ll enough to deserve help. To be honest I’m not sure if I physically compromised or not at the moment, not had bloods or obs done for ages. I know my bmi is 12 so I’m not great but still well enough to hold down a busy full time job so I guess I can’t be that bad.
Like you I think I’ve been spooked by the Nikki Graham news. Maybe I’ll see if I can arrange a phone apt with my gp just to check in.

Hello @AtleastitsnotMonday
I'm sorry you find yourself here. We're not as busy as the teen thread, but all sort of muddling along the best we can with varying degrees of support, acceptance, trying our best, alongside living busy lives.

Your BMI is very, very low so I would urge you to seek help. If you've been unwell for 20 years you must know that such a low BMI will be compromising your health and I'm pretty sure your GP will take you seriously.

So I've put on a couple of pounds and am totally miserable, obsessed and freaking out.
I cannot tell anyone because it's ridiculous. I need to put on weight.
I am terrified that I'll completely lose control and get huge.
I had stopped weighing myself so frequently, but am now back to obsessing about the scales and trying on clothes to see how they fit and 'bone checking'. It's such a waste of time and so shallow and self-absorbed.

I can't focus on my work today - I had a 6am zoom call so it's been an early start anyway.

Restricting makes me feel sharp and in control.

Sorry you're struggling. Have you got any CMHT support? I know how hard it is to stop that thought cycle, but keep distracting yourself from those ED behaviours of checking etc. Also, it's not ridiculous, it's the eating disorder. It will thrive in secret. Is there anyone you can talk to about it?

I have an EDS appointment later this week, which I have waited so long for but am now suddenly terrified of it.

@Rustnot

Sorry you're struggling. Have you got any CMHT support? I know how hard it is to stop that thought cycle, but keep distracting yourself from those ED behaviours of checking etc. Also, it's not ridiculous, it's the eating disorder. It will thrive in secret. Is there anyone you can talk to about it?

I have an EDS appointment later this week, which I have waited so long for but am now suddenly terrified of it.

No, I was discharged a couple of weeks ago. No, I don't have anyone to talk to - not really.

I used to dread the lead up to appointments, but afterwards always felt positive, supported and ready to face challenges. I think the dread would be knowing that it would be hard, you'd be challenged and for me it was having to face up to how unwell I was -am-
Is that how it feels for you?

I know that really the only person I am accountable for is myself, but it helped having someone support me to achieve that.

I went for a run, but have a banging headache now. I've had a long day (early zoom call and virtual conference).

Sorry I knew you had been discharged from EDS but didn't know if you also received support from CMHT.

I know it's so much harder doing it on your own - do you have a plan for your meal tonight?

And yes, I think it's the eating disorder thoughts that are making me apprehensive.

@TheOrigRights sorry to hear you're struggling with it.
I'm same in that any tiny weight increase sends me into a panic and I can't relax until I've lost that weight and more.

I can relate to trying on clothes. Bit of an obsession with getting smaller clothes (which means I'm smaller).

@Rustnot good news about your appointment  really pleased for you!
I know everyone always says: try to be v honest and upfront. Whilst it's good advice, I often feel panic stricken and find it hard to say much. Plus I'm ashamed. Can barely bring myself to write it to strangers on the tinternet much say it out loud.
I hope it goes well for you and that the offer good support.

@AtleastitsnotMonday. Did you feel like speaking to Beat? Or your GP?

@TheOrigRights. Offering you a handhold. Is there any way you could consider keeping those couple of pounds on and staying away from the scales? Even for a few days?
(Should take my own advice here )

I've got therapy appointment tomorrow. Always so nervous before hand.

Is there any way you could consider keeping those couple of pounds on and staying away from the scales? Even for a few days?
I think this is a good way to think about it. Can you make a temporary deal with yourself? When I lost my period at bmi 16 the deal was that I would gain a pound a week until I had it back then could maybe lose a bit as long as I still got my period (I had nothing else wrong so it was the first thing that told me I really wasn't fine).