Diabulimia, I can't break this habit

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Kate Mc

Kate Mc

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I'e been diagnosed for 25 years. I've been struggling for 25 years. I know what I'm supposed to do AND how to do it. I feel ashamed and anxious most of the time. I admit that I put my head in the sand and I'm rubbish with appintments. I use insulin, or rather I don't use insulin to help me control my weight. I have many complications as a result and my day to day life is awful, mostly down to my own stupidity, yet I still can't find away to deal... I'm educated and have brought up a family yet when faced with a team of specialists, I feel like I'm a child, a naughty kid with a bad report... is there anyone who can help me grow up??
 
Kate Mc said:
I'e been diagnosed for 25 years. I've been struggling for 25 years. I know what I'm supposed to do AND how to do it. I feel ashamed and anxious most of the time. I admit that I put my head in the sand and I'm rubbish with appintments. I use insulin, or rather I don't use insulin to help me control my weight. I have many complications as a result and my day to day life is awful, mostly down to my own stupidity, yet I still can't find away to deal... I'm educated and have brought up a family yet when faced with a team of specialists, I feel like I'm a child, a naughty kid with a bad report... is there anyone who can help me grow up??
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Hi and welcome to the forum, the only one that can help is you yourself BUT along with the help and support of your team/doctor and us here on the forum, have you ever spoken to your team or doctor about what's going on? xx
 
Kate Mc said:
I'e been diagnosed for 25 years. I've been struggling for 25 years. I know what I'm supposed to do AND how to do it. I feel ashamed and anxious most of the time. I admit that I put my head in the sand and I'm rubbish with appintments. I use insulin, or rather I don't use insulin to help me control my weight. I have many complications as a result and my day to day life is awful, mostly down to my own stupidity, yet I still can't find away to deal... I'm educated and have brought up a family yet when faced with a team of specialists, I feel like I'm a child, a naughty kid with a bad report... is there anyone who can help me grow up??
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Hi Kate, welcome to the forum 🙂 I'm very sorry to hear about your struggles :( I know we have some members here who have had similar difficulties. There is a charity called DWED (Diabetics With Eating Disorders) who really understand this and hopefully can help, so do please get in touch with them, if you are not already aware of them.
 
Kaylz said:
Hi and welcome to the forum, the only one that can help is you yourself BUT along with the help and support of your team/doctor and us here on the forum, have you ever spoken to your team or doctor about what's going on? xx
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Hi thanks for your reply. I have recently moved up to Scotland and here I've tried to be as honest as I can with the team I see. I hate discussing my diabetes with anyone. I attend and im very anxious, I get very overwhelmed quite quickly. I start positively and then within a few days I'm back to my usual, not testing, overeating on carbs and underestimating insulin. Self sabotage. I go to some arranged appointments but then cancel them due to illness. Probably brought on by stress due to worrying about poor results and responses. Why behave like this when I know it' wrong. I find managing sugar levels and daily life just don't work together. Just one last binge and tomorrow I will be good...tomorrow never happens.
 
Northerner said:
Hi Kate, welcome to the forum 🙂 I'm very sorry to hear about your struggles :( I know we have some members here who have had similar difficulties. There is a charity called DWED (Diabetics With Eating Disorders) who really understand this and hopefully can help, so do please get in touch with them, if you are not already aware of them.
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Thank you for your reply. This is the first time I've written on any forum. In fact the first time I've actually looked for help myself. Today I read about DWED. I think I will take a look at their page. Thank you
 
Kate Mc said:
Thank you for your reply. This is the first time I've written on any forum. In fact the first time I've actually looked for help myself. Today I read about DWED. I think I will take a look at their page. Thank you
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Well, you have taken a very important first step, and I'm glad you are determined to help yourself and feel able to talk about it 🙂 Some of our former members are heavily involved in DWED and understand how you are feeling from their own personal experiences. They work not only to provide support for people in your circumstances, but also to try and get some proper 'joined up' thinking so that services are made more accessible across the NHS - often those involved in diabetes care don't have the skills or knowledge to help with eating disorders, and those who do have that knowledge do not understand diabetes. You need access to people who understand both. Do please contact them Kate 🙂
 
Well done for coming on here! At least you know you have a problem and want to do something about it. Please, as others have said, be honest with your team and try to find the help you need. I think it's difficult for someone who doesn't have an eating disorder to understand, but I lost someone to bulimia (not diabetes related) and so I do know it's not as simple as "just stop doing what you're doing and you'll be fine" as otherwise why wouldn't you have done that already? Eating disorders are very complex, but at least you want to change.
I saw this leaflet in my local library at the weekend about self help books on prescription: https://readingagency.org.uk/adults/quick-guides/reading-well/ perhaps something in there would help you come up with some coping strategies?

Hope you can find a way out soon, please feel free to pop on here to chat any time and talk through things. Best of luck.
 
Pigeon said:
Well done for coming on here! At least you know you have a problem and want to do something about it. Please, as others have said, be honest with your team and try to find the help you need. I think it's difficult for someone who doesn't have an eating disorder to understand, but I lost someone to bulimia (not diabetes related) and so I do know it's not as simple as "just stop doing what you're doing and you'll be fine" as otherwise why wouldn't you have done that already? Eating disorders are very complex, but at least you want to change.
I saw this leaflet in my local library at the weekend about self help books on prescription: https://readingagency.org.uk/adults/quick-guides/reading-well/ perhaps something in there would help you come up with some coping strategies?

Hope you can find a way out soon, please feel free to pop on here to chat any time and talk through things. Best of luck.
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Thank you. It's true it isn't just as simple as stop doing it. I was nervous to speak out as it is after all me doing it to myself and why do I deserve help when there are others who work hard to keep on target. Thank you for not judging me everyone who had responded. It makes it easier to be honest.
 
everydayupsanddowns said:
Good advice to contact DWED @Kate Mc - there are other organisations like BEAT which might also be able to put you into contact with the support you need (not specifically diabetes related).

There are also a number of blogs from people who share their own experience which may help you feel less alone (though they may be slightly triggering too, so be cautious)

https://www.t1resources.uk/resources/item/disordered-eating-in-diabetes-diabetes-geek/
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Thanks I will look at these. It' took me a long time to be brave enough to explain myself so I'm so glad to get these responses. I thought I would be told to get a grip. But believe me I've tried. I am on a positive mission right now but It's like having the devil on my back. Especially if I feel self conscous. I wish I had posted sooner. There is more help than I thought.
 
Disordered eating and diabetes has begun to be acknowledged properly in the last few years, and about time too!

Hope you can get the specialist support you need and we are always here if you need a good rant and moan.

Thank you for being brave enough to share your story, and brilliant that you are taking steps to move forward to better health 🙂
 
Hello Kate and welcome🙂

I have lived through what you are dealing with. Diabulimia -it didn't have a name 25 years ago, I was a T1 with bulimia/anorexia- is an incredibly powerful illness and even though we know what we should do and have all the tools to do it the battle in my mind was so very difficult to overcome. I got help from an eating disorders clinic and my diabetes consultant who worked with us all to get a way for me to move away from such a destructive cycle. It did take me a long time and a few attempts to get to a better place and sadly it caused devastating complications that I live with constantly.

Please tell your team, if you can't bring yourself to say it out loud , write it down but please get the message of how much you are struggling across to them. I know that is such a hard thing to do, I blamed my poor control on everything I could but inside I was desperate to just say what I was doing. Some people will say what on earth are you behaving like that for and if only it was as simple as just stopping but it takes a lot of hard effort, help and dedication to begin to break the cycle and set yourself on a better path.

Sadly, disorganised eating and insulin manipulation is not uncommon so please don't feel ashamed and blame yourself for the struggles you're facing. This page from the DUK site is very useful and suggests that up to 40% of young female T1's can be affected. https://www.diabetes.org.uk/guide-t...7eyw3oaYumY0CHYkXQzIDCbyGKOvfAPIaAv7GEALw_wcB

I wish you well, please let us know how things go. It is a serious challenge to break out of the powerful mental and physical cycle but it is achievable and infinitely worth the effort you need to put in. My gremlins are still there some days to a lesser extent especially when I'm worried or upset but I know I have to keep a tight lid on them and look after myself as well as I can, Good luck seeking help and don't be put off, asking for help is the very best way forward. 🙂
 
Flower said:
Hello Kate and welcome🙂

I have lived through what you are dealing with. Diabulimia -it didn't have a name 25 years ago, I was a T1 with bulimia/anorexia- is an incredibly powerful illness and even though we know what we should do and have all the tools to do it the battle in my mind was so very difficult to overcome. I got help from an eating disorders clinic and my diabetes consultant who worked with us all to get a way for me to move away from such a destructive cycle. It did take me a long time and a few attempts to get to a better place and sadly it caused devastating complications that I live with constantly.

Please tell your team, if you can't bring yourself to say it out loud , write it down but please get the message of how much you are struggling across to them. I know that is such a hard thing to do, I blamed my poor control on everything I could but inside I was desperate to just say what I was doing. Some people will say what on earth are you behaving like that for and if only it was as simple as just stopping but it takes a lot of hard effort, help and dedication to begin to break the cycle and set yourself on a better path.

Sadly, disorganised eating and insulin manipulation is not uncommon so please don't feel ashamed and blame yourself for the struggles you're facing. This page from the DUK site is very useful and suggests that up to 40% of young female T1's can be affected. https://www.diabe ates.org.uk/guide-to-diabetes/life-with-diabetes/diabulimia?gclid=Cj0KCQjw2pXXBRD5ARIsAIYoEbf8zCimLVeGuGkbL4DMnu07eyw3oaYumY0CHYkXQzIDCbyGKOvfAPIaAv7GEALw_wcB

I wish you well, please let us know how things go. It is a serious challenge to break out of the powerful mental and physical cycle but it is achievable and infinitely worth the effort you need to put in. My gremlins are still there some days to a lesser extent especially when I'm worried or upset but I know I have to keep a tight lid on them and look after myself as well as I can, Good luck seeking help and don't be put off, asking for help is the very best way forward. 🙂
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Thank you. It means a lot to hear I'm not alone with this and that there are people who can beat it. I just wish that my health care team would have been honest and quicker to help me realise what was going on, that I'm not a bad person who just has poor control and an immature approach towards my diabetes, that I'm not the only one who struggles. I know my consultants were aware of what I was doing, only one consultant said to me as I was leaving yet another pointless appointment that I needed to stop using insulin to manipulate my weight. that was it, no support, no discussion, just don't come back with your poor results and bad attitude. so I just stopped going. It's plainly obvious to the professionals that a person is struggling, if more is done to treat the mental health side affects that diabetes comes with then there would be better results and less complications. I have admitted my problem to my new doctors in Scotland and I'm hoping that together with them and a lot of hard work from me that I can put a stop to this self sabotage
 
I did find that some medics just couldn't understand that I was inflicting such damage on myself yet couldn't stop. I had various comments such as 'you're not still doing that are you?'. I realise it is hard to 'get' diabulimia if you're looking in from the outside, we have life saving insulin yet we- for a myriad of reasons- are in a battle with ourselves to use it correctly.

The first psychologist I saw asked me to write a list of diabetic complications, he kindly informed me I'd left death off the list. He then asked me how far down the list I wanted to go. Needless to say I didn't go back to him, that approach most certainly didn't encourage me to go home and eat some tea with the correct bolus and didn't begin to give me positive ideas of how to break out of self destruction.

If you come up against such lack of understanding then search for someone else. It is tough to ask for help in the first place but when that help causes further issues when you are already vulnerable you do just have to set your mind to ask again until you find the appropriate help. It is out there and you can get better Kate. 🙂
 
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