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?

I have binge eating disorder. Been suffering since I was 14. Maybe earlier.

@Rustnot. Hopefully soon!!
She rang me a few times to introduce herself. And to set up regular medical checks that hadn't been done before.

Sorry to hear you are struggling.

It's very tough. I hope all of us get lots of help soon.

Anyone have any tips for dealing with a giant dickhead claiming that you’re on a “diet”? I’m getting rather quite pissed off to put it nicely 😖

@thesootherfairy I'm so pleased things are finally moving forward for you - hopefully they can give you what you need.

Who is it that is saying that @Bubblemonkey?

@Rustnot fingers crossed. She does seem nice. Really hope she can help me.

I think it is going to be very hard.

[quote Rustnot]@thesootherfairy I'm so pleased things are finally moving forward for you - hopefully they can give you what you need.

Who is it that is saying that @Bubblemonkey?[/quote]
The arsehole of a boyfriend 😓

Yes, I think recovery will be hard but worth it.

@bubblemonkey do you have any support?

@thesootherfairy *are you receiving psychological therapy at all? I followed your thread and it seemed like you've had dietician and nurse and occasionally a psychiatrist but very little therapy.

Getting you to do meal plans without helping you psychologically isn't going to do a lot is it?*

My care coord is a psychological therapist, NOT a psychologist. Her methods did not work for me.
I saw the consultant clinical psychologist when I was under the care of the ED team prior to this stint. She was amazing.

I know what I need to do, it's up to me to put it in place. Simple huh?!

Can I join? I think I might have binge eating disorder and I haven't got a clue what will be helpful.

I've just spoken to my GP for the first time. I've done all sorts of diets in the past, lost a stone or more and then fell into binging. I'm at my heaviest at the moment and I'm just binge eating any time I'm alone. I told the doctor this today and he suggested I go to weight watchers.

I just don't really know what to do now, I was hoping that the GP would suggest some sort of resources or organisations locally that could help me get control over the binging but I really don't want to start a new fad diet. I can calorie count my regular food no problem, but that doesn't really make much of a difference when you're consuming an extra 2000 calories in secret in your car every few days. I'm at a total loss now.

Welcome @hopitbopit . Sorry to hear that you couldn't get anywhere with your GP, could you ask to see another doctor at the practice? The lack of help available is frustrating isn't it? I don't have personal experience with BED but a close friend had bulimia and she says she found this book very helpful with her recovery www.amazon.co.uk/gp/product/B00DG1H8V4/ref=dbs_a_def_rwt_bibl_vppi_i0?tag=mumsnetforu03-21.

The BEAT website also has a HelpFinder. You may be able to self refer to ED services, or if you wanted to search for a support group locally helpfinder.beateatingdisorders.org.uk/.

Thanks very much. I've just referred myself to talking therapies for our local service which I didn't realise I could do when I had the appointment with GP. It's a few weeks for an appointment but that's better than nothing. I'm going to have a good look on BEAT later too. Is beat the only charity that helps people with EDs?

Welcome @hopitbopit sorry that you find ourself here with us.

What you can get as help from NHS varies massively. I've just found out that this doesn't just apply to different areas (trusts/post code lottery) but also how it's approached and who is supporting/referring you.

Update:
My very lovely, effective and excellent GP had referred me to the local service who were supposed to be an all age service with whistles and bells.

As per my other posts below, I had issues and they were crap. Utterly crap.

So I plucked up courage in January to tell my Gp what was happening and how awful and rude the woman I had to see had been to me (which the ED service woman admitted to after being questioned by the service manager later on!).

I was very upset and my excellent GP complained to them. She must have given them an absolutely kicking!!

I had the service manager contact me apologetically. They sorted out a new senior clinical psychologist immediately.

I spoke to her on the phone a few times and she started proper weekly therapy with me a couple of weeks ago.

Apparently this other very rude lady was supposed to have been providing me with weekly therapy but couldn't be arsed and offered monthly appointments only even though I was high risk. She didn't organise any medical physical checks and was negligent. and effectively tried to put me off by being rude to me, making me cry repeatedly, kept suggesting I was a liar and didn't need any help etc to get rid of me!

The new improved person is lovely and kind and seems to understand. Has offered me 12 months weekly therapy.

My Gp was so appalled that she has taken on all my medical checks. And has been checking in with me about the new psychologist etc.

But I'm under no illusions. Was it not for my really incredible kick arse GP, I would not be receiving any treatment at all.

She even did my last medical check herself (could have been done by a nurse) and asked to make sure I was getting weekly therapy by someone who was being appropriate with me and was helping. She kept asking if I was ok, being looked after, liked the new psychologist and that I was seeing her weekly! She stated that she'd made herself quite clear to them. I'd love to know what she said to them!!

So finally progress. How long before the therapy really starts to make an impact, I don't know.

In essence, you need someone within NhS to champion your cause.

I've heard from others that this could be your GP, it could be a dietitian, another medical professional from a hospital dept (who referred you for the ED or suggested you have help) or even a manager within the local ED service.
Once someone takes ownership of your situation, suddenly help is available and good help at that.

I think that ED is about covering up emotions so until you receive therapy to work through the emotions and the issues which caused you to need to cover those emotions, you can't recover. You can only partially recover only to relapse again and again.

I'm not receiving CbT but emotion focused therapy. I'm still scared, worried it won't work and all of that but there is a little bit of hope there.

My advice, get someone to champion your cause.
Happy Mother's Day to all of you. I hope we all get sorted and in a years time come back here and see how well we are all doing.

Is beat the only charity that helps people with EDs?
Not sure. I'm relatively new to this though, I had been recovered from my teens until I relapsed in my thirties two years ago. Others may have a better idea what is available.

@thesootherfairy
Glad you've been able to finally access something you think may help you .

Has anyone else read the 2019 Watdon et al study 'Genome-wide association study identifies eight risk loci and implicates metabo-psychiatric origins for anorexia nervosa'? It makes so much sense to me that metabolic factors are involved as well as psychiatric ones. For me, certainly this time around, it felt very much my body driving it rather than my mind. I hope that moving past just seeing anorexia as a mental illness should help with treatment options in the future.

I've been discharged from the ED team.
I feel untethered. I am not recovered. I know what I need to do.

Did you feel ready to be discharged?

@TheOrigRights

I've been discharged from the ED team. I feel untethered. I am not recovered. I know what I need to do.

This sounds negative but also positive

You’re not recovered
But you know what you need to do

What do you need to do?

Why discharged?
Weight restored or no more funding for you?

I do think I need support, but what they were providing didn't seem to sit well with me. I didn't have a great relationship with the psychological therapist - we just didn't click and her methods didn't suit me. Is it awful to say I think I am a lot more intelligent than her? In her sessions I knew where they were going, and I don't think she adapted to that. It seemed very formulaic.

I did click more with the dietician but she's not trained in the treating the underlying issues/problems.

In the appt where I was discharged I had the feeling they'd gone into that meeting with that aim so I just went along with it.

They have no idea what my weight is, I have had zoom meetings since my first assessment in March '20.

I did have a year of treatment with them so I am very fortunate in that way.

The team I was with before this one were excellent and really got me.

@TheOrigRights
I'm really sorry to hear that. It sounds like this team went through the motions with you and didn't help much.

Very dangerous for them to discharge you without knowing your weight. Especially as they've not seen you so have no idea how you're doing physically.

Do they not insist on monthly checks?

Even while I was waiting, I had checks and when Ed services failed to organise my GP stepped in and I have monthly weight and blood tests via her.
My GP insist I attend.

It sounds like a missed opportunity. They only half heartedly offered you help but didn't really check it was working.

If therapy isn't working you apparently under NICE have the right to change to something else. They can't discharge you if you're not recovered.

It's so hard for me to read this. You and I are similar age. You asked for help literally years ago and it has by the sounds of things been patchy with one good bit of help in between.

This is my first go at getting help and it didn't start well but after my Gp intervened, things improved. I do worry that it won't last. My Gp checked in with me a couple of weeks ago and asked again whether I was been seen weekly and by which type of therapist etc. And told me it was supposed to be weekly for a year.

Could your GP help @TheOrigRights? Is that an option?

It really sounds like you're not ready to be discharged and you've not made enough progress to get you anywhere.

How do you feel about it all @TheOrigRights? I'm reading between the lines of your post, it sounds like you feel like they pushed you, leaving you without support? If this is how you feel, I'm really sorry and big hugs for you.

It was impossible for me to ask for help for decades and when I finally did it, it was so hard. I can really understand if you feel Let down. Not everyone can recover quickly. Some just need help for longer.

Also sounds like you don't have anyone to advocate for you. I didn't largely because I never discussed or speak about my ed and it's extremely well concealed. Once I finally managed to tell my GP, I had someone. Clearly she doesn't provide emotional support. Her support is practical in making sure I'm getting treatment, the right kind of treatment and medical checks. It has made a difference to me.

@TheOrigRights is there anyone like that you could turn to for practical support? It's been a light bulb moment for me about 2 months ago when I received that practical support and it changed things. Made me feel less alone.

At that point I'd already tried BEAT who were really nice but I found their advice geared to teens and not really appropriate for me and therefore not useful.

Well I'm here for you @TheOrigRights. PM me if you want ❤️

@TheOrigRights do you have support from a community mental health team at all? I don't think it's unusual for people with EDs to have several rounds of treatment and I wonder if a while away from therapy and just trying to do those things that you say you know you need to do may help. Of course I know that accessing treatment again when you need it would not be straight forward, and it doesn't seem like your physical health has been taken into consideration at all. Do you think you are physically ok?

@thesootherfairy how are things going for you?

@TheOrigRights Did they not ask for your weight or for you to keep a track of it weekly or anything? Are you at a healthy BMI now?

I wasn't asked to have physical checks for the six months I was on the waiting list after my initial assessment. I had bloods done at the GP in Nov 2019, nothing since. At no point did anyone suggest I should be having check ups.

@Rustnot
It's still tough. I started weekly therapy just over a month ago - after a long wait and that whole debarcle with the rude woman I had to meet monthly who made me feel so low. Transpires this woman was supposed to give me weekly therapy but couldn't be arsed and tried to put me off the whole thing.

Initially didn't really tell my GP what was going on. But in January I felt so bad and I spoke to her and told her everything. She wrote a massive complaint to the ED service and next day the service manager left message for me and I rang her back later.
After that I was allocated a new therapist who is very senior in the service.
She rang me a few times first and we spoke a bit on the phone about what had happened with this other woman and how I was doing. And then I started therapy with her.
She's really nice and I think she understands me.
Therapy itself if very hard. Much harder than I realised it would be. Really challenging. But I feel supported by her and by my GP in the practical sense.

Having this support has meant so much. I feel like there might be some hope. If you've seen all my previous posts, I've been incredibly negative and dismissing and down (and moany!).
Not so much now.
The ED clearly isn't any better yet. Going to take a lot more than 6 sessions!
We are only at the stage of talking about what the ED means/is to me and even that is really hard to answer.
Don't feel quite so low, not so much despair now.
I've been offered a years therapy.
It's a big commitment. I'm also trying to make the most of it given it was such a struggle to get it in the first place.

I'm under no illusions. If my Gp hadn't been 100% on the case and giving them a good kick and complained, I wouldn't be getting anything at all. I've found this with other NhS services that unless your GP is your champion and on their case, they just try to get rid of you, forget to make follow up appointments, forget to schedule tests, forget to write to you with results etc etc. Perhaps my local trust is just crap.

It would appear that you really do need to click with a therapist to feel hopeful about it making a difference and hopeful about possible recovery. Don't know what recovery even looks like yet. It's still early days and feels slightly terrifying still.

I won't lie, I'm still angry about the actions of that other therapist who deliberately made me feel bad and didn't schedule the appointments she was supposed to with me or provide me with the weekly therapy she was supposed to. Considering I was quite unwell and she made that worse, it could have been really bad.
The service have written back with a long apology. I hope they take note and never let anyone else with anorexia go through this.

That was a very long answer to your question @Rustnot! I guess the short version is; hopeful.

Hey all. Wondered if any of you have experience of your employer knowing about your eating disorder? Just wondered how supportive they were. If you felt discriminated against. What to look out for. Thanks.