How am I able to get help and be taken seriously

[Soph895]

Hi I’m really struggling and don’t know where else to turn to.
Just a quick back story I’m t2 taking mounjaro which has helped my blood sugars become in normal range (I’m waiting for my next review to be told my hba1c, but I check my blood sugars daily). I also struggle with anxiety and depression and also have an eating disorder.
In December I became really poorly with gastroenteritis and became dehydration and ended up in hospital for 4 days, still to this time I’ve been unwell and had to have ultrasound scan as my liver and kidneys have been damaged due to infection.

I was struggling with my eating disorder before this happened and it’s made it 10x worse, I recognised I needed help and told my gp aswell as the diabetes nurse and psychiatrist when I had separate appointments. In which they didn’t really listen, the diabetes nurse said just don’t junk food (which I don’t), psychiatrist just took notes and asked a few questions and that was it and my GP turned round and said he’s not concerned at the moment as my bmi isn’t low. Yet I explained I’ve been not eating or eating very little and crying over food which is causing distress. I also lost 2 stone in under 1.5 months

At work yesterday I had a bad hypo, which terrified me as well as scaring my work colleagues as they never saw me like that before. It’s took ages to bring my sugars up because I was crying not wanting to eat anything.

Being really ill made me not have an appetite and when I eat I feel so sick. Then I’ve got my stupid brain saying I don’t deserve to eat. And because of the liver and kidney problems my mind tells me don’t eat then they won’t get worse.

I’m so lost and don’t know what to do, I feel like I’m being judged and not taken seriously because I’m a bigger person. An eating disorder isn’t necessarily weight related it’s a mental disorder so why am I not worthy enough to get support and help. I’m fed up of the gaslighting by medical professionals.
Sorry for the rant, I tried to speak to family and friends but they’re not even trying to understand, I get told to try new things, stay strong etc almost comes across as as patronising

 

[IanBish]

I don't have experience of eating disorders, but other people here do, and may come along to offer advice and support.

Feel free to rant and vent - nobody's going to judge.

 

[MrsA2]

No personal experience of eating disorder here either, but I do have a relative who has severe mental health issues and we've found the NHS offerings to be be dire, even if we can find any in the first place.

However, you sound like you know yourself well so could you perhaps put some self care in place for the meanwhile?
I'm thinking everything from counselling, specific support groups, online therapy, mindfulness, exercise, getting out in the fresh air daily etc etc
I can post soem links or you can pm me for them.

I'm just thinking that if you do some things for yourself it stops the awful feeling of waiting for someone else to do something.

I hope this isn't coming across as brushing you off, but you sound knowledgeable and intelligent.

Also, just another thought isn't Mounjaro one of those where for soem people it can adversely affect mood? And can cause gastro trouble? Might be worth checking out

You've been through a lot, so be gentle on yourself while you heal.

 

[Soph895]

No personal experience of eating disorder here either, but I do have a relative who has severe mental health issues and we've found the NHS offerings to be be dire, even if we can find any in the first place.

However, you sound like you know yourself well so could you perhaps put some self care in place for the meanwhile?
I'm thinking everything from counselling, specific support groups, online therapy, mindfulness, exercise, getting out in the fresh air daily etc etc
I can post soem links or you can pm me for them.

I'm just thinking that if you do some things for yourself it stops the awful feeling of waiting for someone else to do something.

I hope this isn't coming across as brushing you off, but you sound knowledgeable and intelligent.

Also, just another thought isn't Mounjaro one of those where for soem people it can adversely affect mood? And can cause gastro trouble? Might be worth checking out

You've been through a lot, so be gentle on yourself while you heal.

Thankyou for your message. Yes mounjaro can, but the doctors said it wasn’t the medication, I had come back from holiday when I was ill the day before flying and was something I ate.

I’ve honestly not stopped trying selfncar, I forgot to mention I also have fibromyalgia which causes a lot of pain, I try and go for walks when I can, I do yoga with a friend. Unfortunately I can’t afford councelling privately and when I did the refferal my gp told me to do when my mental health got bad 2 yrs ago they wrote a letter to my gp and said my needs are too complex and I need long term psychotherapy. My psychiatrist won’t even refer me to therapy yet he just keeps altering my medication doses.
So I’m trying all the best I can and not relying on others.
I have so much trauma with the nhs mental health team, the crisis team were awful and I was admitted a year ago and stayed in hospital for just under 2 weeks. I dont want to be back there which is why I’m constantly pushing on. But I’m just getting exhausted of it all.

 

[Antje77]

An eating disorder isn’t necessarily weight related it’s a mental disorder

This is so very true, and you definitely deserve support.

I'm so sorry to hear that your GP and psychiatrist aren't taking this seriously.
I have no advice and no experience with eating disorders but for what it's worth, I do take you seriously and I listen.

Tagging @AndBreathe , who knows more than I do about overcoming eating disorders.

I wish you all the best!

 

[Grant_Vicat]

Hi I’m really struggling and don’t know where else to turn to.
Just a quick back story I’m t2 taking mounjaro which has helped my blood sugars become in normal range (I’m waiting for my next review to be told my hba1c, but I check my blood sugars daily). I also struggle with anxiety and depression and also have an eating disorder.
In December I became really poorly with gastroenteritis and became dehydration and ended up in hospital for 4 days, still to this time I’ve been unwell and had to have ultrasound scan as my liver and kidneys have been damaged due to infection.

I was struggling with my eating disorder before this happened and it’s made it 10x worse, I recognised I needed help and told my gp aswell as the diabetes nurse and psychiatrist when I had separate appointments. In which they didn’t really listen, the diabetes nurse said just don’t junk food (which I don’t), psychiatrist just took notes and asked a few questions and that was it and my GP turned round and said he’s not concerned at the moment as my bmi isn’t low. Yet I explained I’ve been not eating or eating very little and crying over food which is causing distress. I also lost 2 stone in under 1.5 months

At work yesterday I had a bad hypo, which terrified me as well as scaring my work colleagues as they never saw me like that before. It’s took ages to bring my sugars up because I was crying not wanting to eat anything.

Being really ill made me not have an appetite and when I eat I feel so sick. Then I’ve got my stupid brain saying I don’t deserve to eat. And because of the liver and kidney problems my mind tells me don’t eat then they won’t get worse.

I’m so lost and don’t know what to do, I feel like I’m being judged and not taken seriously because I’m a bigger person. An eating disorder isn’t necessarily weight related it’s a mental disorder so why am I not worthy enough to get support and help. I’m fed up of the gaslighting by medical professionals.
Sorry for the rant, I tried to speak to family and friends but they’re not even trying to understand, I get told to try new things, stay strong etc almost comes across as as patronising

Just thinking about hypos. Can you tolerate fruit juice? I found this (especially pineapple juice for some reason) worked easily as quickly as glucose.

 

[Soph895]

Just thinking about hypos. Can you tolerate fruit juice? I found this (especially pineapple juice for some reason) worked easily as quickly as glucose.

I haven’t tried juice, but guess it’s something I could try as you don’t need a lot probably to bring it up.

 

[JoKalsbeek]

Hi I’m really struggling and don’t know where else to turn to.
Just a quick back story I’m t2 taking mounjaro which has helped my blood sugars become in normal range (I’m waiting for my next review to be told my hba1c, but I check my blood sugars daily). I also struggle with anxiety and depression and also have an eating disorder.
In December I became really poorly with gastroenteritis and became dehydration and ended up in hospital for 4 days, still to this time I’ve been unwell and had to have ultrasound scan as my liver and kidneys have been damaged due to infection.

I was struggling with my eating disorder before this happened and it’s made it 10x worse, I recognised I needed help and told my gp aswell as the diabetes nurse and psychiatrist when I had separate appointments. In which they didn’t really listen, the diabetes nurse said just don’t junk food (which I don’t), psychiatrist just took notes and asked a few questions and that was it and my GP turned round and said he’s not concerned at the moment as my bmi isn’t low. Yet I explained I’ve been not eating or eating very little and crying over food which is causing distress. I also lost 2 stone in under 1.5 months

At work yesterday I had a bad hypo, which terrified me as well as scaring my work colleagues as they never saw me like that before. It’s took ages to bring my sugars up because I was crying not wanting to eat anything.

Being really ill made me not have an appetite and when I eat I feel so sick. Then I’ve got my stupid brain saying I don’t deserve to eat. And because of the liver and kidney problems my mind tells me don’t eat then they won’t get worse.

I’m so lost and don’t know what to do, I feel like I’m being judged and not taken seriously because I’m a bigger person. An eating disorder isn’t necessarily weight related it’s a mental disorder so why am I not worthy enough to get support and help. I’m fed up of the gaslighting by medical professionals.
Sorry for the rant, I tried to speak to family and friends but they’re not even trying to understand, I get told to try new things, stay strong etc almost comes across as as patronising

Nothing useful to add, just, you know... It's not just the NHS where mental health just goes out the window. Took me 40 years to get a proper diagnosis in the Netherlands, before that I was just a contrary, annoying, lazy and lying patient, because they were treating me for something I didn't have, and nothing was working. In the meantime I had to keep myself alive, literally, without professional help. Find stuff that works for you, if you can, and find support wherever you can dig it up. There's people here, and I'm sure there are support groups or patient organisations online where you might get some ideas on how to get through this. Also, maybe read a little bit on schema therapy. It's not the same as having a therapist working with you, not even close, but if you know the principles of the thing, it could help you start thinking less about punishing yourself ("I don't deserve to eat") and more about nurturing your body and soul some.

Hugs and good luck!
Jo

 

[AndBreathe]

Hi I’m really struggling and don’t know where else to turn to.
Just a quick back story I’m t2 taking mounjaro which has helped my blood sugars become in normal range (I’m waiting for my next review to be told my hba1c, but I check my blood sugars daily). I also struggle with anxiety and depression and also have an eating disorder.
In December I became really poorly with gastroenteritis and became dehydration and ended up in hospital for 4 days, still to this time I’ve been unwell and had to have ultrasound scan as my liver and kidneys have been damaged due to infection.

I was struggling with my eating disorder before this happened and it’s made it 10x worse, I recognised I needed help and told my gp aswell as the diabetes nurse and psychiatrist when I had separate appointments. In which they didn’t really listen, the diabetes nurse said just don’t junk food (which I don’t), psychiatrist just took notes and asked a few questions and that was it and my GP turned round and said he’s not concerned at the moment as my bmi isn’t low. Yet I explained I’ve been not eating or eating very little and crying over food which is causing distress. I also lost 2 stone in under 1.5 months

At work yesterday I had a bad hypo, which terrified me as well as scaring my work colleagues as they never saw me like that before. It’s took ages to bring my sugars up because I was crying not wanting to eat anything.

Being really ill made me not have an appetite and when I eat I feel so sick. Then I’ve got my stupid brain saying I don’t deserve to eat. And because of the liver and kidney problems my mind tells me don’t eat then they won’t get worse.

I’m so lost and don’t know what to do, I feel like I’m being judged and not taken seriously because I’m a bigger person. An eating disorder isn’t necessarily weight related it’s a mental disorder so why am I not worthy enough to get support and help. I’m fed up of the gaslighting by medical professionals.
Sorry for the rant, I tried to speak to family and friends but they’re not even trying to understand, I get told to try new things, stay strong etc almost comes across as as patronising

Soph, it sounds like you're really been through the mill lately. Don't be too hard on yourself.

The great news is both the liver and kidneys have a great capacity to recover, so hopefully over time those improve for you.

You don't say what sort of eating disorder you have (and to be clear, I'm not asking you to state it), but eating disorders are horrid. The grasp at your core and can badly influence unexpected areas of our lives. The rate of your weight loss likely indicates you aren't getting enough nutrition, but also accepting your Mounjaro is designed to help you trim up as well as helping with your blood sugars. Have the eating challenges coincided with increasing your dose or anything like that?

When do you next see your psychiatrist? Is he specifically working with you on your eating disorder? Are you cared for by a multi-disciplinary team, to cover your various conditions or does each person deal only with their own thing?

I know when we don't feel on top form that it's hard to be strong and insist on what we feel we deserve. Sometimes though, the word "why" can be really powerful.

If you feel you wouldn't be able to tackle him in conversation, perhaps write a letter before you go. You can either send it or hand it to him at the start of the appointment. That perhaps helps you ensure you say all you want to.

Finally, I just wanted to say I am many years on from my time with an eating disorder. You can recover. It's not always easy, but do stick with it. There are better times ahead.

 

[Carole03]

Nothing to add but sending a huge hug and wishing you strength.

 

[Soph895]

Soph, it sounds like you're really been through the mill lately. Don't be too hard on yourself.

The great news is both the liver and kidneys have a great capacity to recover, so hopefully over time those improve for you.

You don't say what sort of eating disorder you have (and to be clear, I'm not asking you to state it), but eating disorders are horrid. The grasp at your core and can badly influence unexpected areas of our lives. The rate of your weight loss likely indicates you aren't getting enough nutrition, but also accepting your Mounjaro is designed to help you trim up as well as helping with your blood sugars. Have the eating challenges coincided with increasing your dose or anything like that?

When do you next see your psychiatrist? Is he specifically working with you on your eating disorder? Are you cared for by a multi-disciplinary team, to cover your various conditions or does each person deal only with their own thing?

I know when we don't feel on top form that it's hard to be strong and insist on what we feel we deserve. Sometimes though, the word "why" can be really powerful.

If you feel you wouldn't be able to tackle him in conversation, perhaps write a letter before you go. You can either send it or hand it to him at the start of the appointment. That perhaps helps you ensure you say all you want to.

Finally, I just wanted to say I am many years on from my time with an eating disorder. You can recover. It's not always easy, but do stick with it. There are better times ahead.

Thankyou for your message, I’m not under a multi disciplinary team, I go to separate people who deal with that specific thing.
I wasn’t under my psychiatrist for the eating disorder it was my overall mental health which I was diagnosed with anxiety depression and c-pdst. I spoke about my eating disorder at my first few appointments and then nothing was mentioned after. I tend to close up as I find there’s so much going on I don’t know how to say everything or I forget because I’m so anxious. So maybe me writing it down might and give it him might help, so thanks for that tip. I don’t see him for another 3 months, I saw him 2 weeks ago, and to be honest I can barely remember the appointment as I was so drained and tired.

My eating disorder is OSFED (other specified feeding or eating disorder) so my symptoms don’t fit into one category, my symptoms mainly cross between bulimia and atypical anorexia.

I knew the liver can recover I was under the impression your kidneys can’t if you have kidney disease, but really hope they can.

 

[AndBreathe]

Thankyou for your message, I’m not under a multi disciplinary team, I go to separate people who deal with that specific thing.
I wasn’t under my psychiatrist for the eating disorder it was my overall mental health which I was diagnosed with anxiety depression and c-pdst. I spoke about my eating disorder at my first few appointments and then nothing was mentioned after. I tend to close up as I find there’s so much going on I don’t know how to say everything or I forget because I’m so anxious. So maybe me writing it down might and give it him might help, so thanks for that tip. I don’t see him for another 3 months, I saw him 2 weeks ago, and to be honest I can barely remember the appointment as I was so drained and tired.

My eating disorder is OSFED (other specified feeding or eating disorder) so my symptoms don’t fit into one category, my symptoms mainly cross between bulimia and atypical anorexia.

I knew the liver can recover I was under the impression your kidneys can’t if you have kidney disease, but really hope they can.

The liver is the star when it comes to healing. The kidneys can do well (obviously depending on the issue - again, I'm not asking), but not quite as fabulously as the liver can (again, dependent on the type of damage).

Do you see anyone for your eating disorder these days, or are you left to it to "do better"? I know it's very easy to say, and much less easy to do, but if you can, do try to focus on nutritionally dense foods, meaning that even if you're not eating large amounts, there is goodness in what's going in. (In my darkest days, I was surviving on grapefruit, apples and tomatoes, so don't follow my lead!)

How about writing to your psychiatrist now. If you can find out who his secretary is, she may give you an email you could use, but in any case, secretaries can be real allies when things are rough. Even if you post it by snail mail, at least he would know now how you feel about things. You need this off your chest.

Honestly, gird your loins and write that letter. You might need tissues as you do, because your frustration might come flooding out, but that's unlikely to be a bad thing, in the bigger picture.

Invest that time. You are worth it. You want to be well, and you deserve to be able to live your best life.

 

[Marikev]

«At work yesterday I had a bad hypo, which terrified me as well as scaring my work colleagues as they never saw me like that before. It’s took ages to bring my sugars up because I was crying not wanting to eat anything.»

Every time I have a hypo it’s a big surprise and I get a bit panicky, so I have a stash of little boxes of juice, in the kitchen, in the bedroom in the door of the car. I started off using muesli bars, but can’t cope with one of those when my CGM alarm goes off or I feel ‘funny’. I also use pouches of baby food, which don’t do that annoying thing the juice boxes do of creating a sticky fountain of juice when you put the straw in them. The baby food pouches have a screw lid on them and here in Norway I can buy long life ones. Have looked briefly in the UK and I could only find refrigerated ones. I tried the savoury ones, but they were disgusting..to my palate at least.
Secomd the idea of writing to your doctor(s) or going to your appointment with a list.
It’s still early days after your bout of gastro enteritis , give yourself time to get over that.
Be nice to yourself , give yourself some treats and get out and do the things you like doing.
Livers are clever , if sometimes annoying organs. I had a year of scans, prods, pokes,until they decided I had probably damaged my liver myself, by drinking alcohol maybe too regularly, before we moved to Norway. Too expensive to do that anymore here. But my levels are now back in a normal range. I just wish my old liver wouldn’t panic when I go for a walk and push my blood sugar level up….
best wishes

 

[Hopeful34]

Every time I have a hypo it’s a big surprise and I get a bit panicky, so I have a stash of little boxes of juice, in the kitchen, in the bedroom in the door of the car.

Maybe consider raising the low glucose alert on your cgm to 4.5 or even 5, so if you are going to hypo, you can nudge your bloods up a little to avoid a hypo.