diabulimia

[sarahpench]

hi guys
I am wondering if there are any people suffering with diabulimia??
or if you are even aware what diabulimia is??
for people who are not sure, it is when a diabetic manipulates their insulin doses to lose weight this may include stopping altogether. i am trying to find out how many people are aware of this as I strongly believe there is not enough being done about this life or death situation especially in the UK. I would be grateful for any feedback.


thanks.
Sarah

 

[zand]

I'm T2 not on insulin so it doesn't apply to me.

Yes I became aware of it very many years ago on the TV program Casualty (when Charlie was young!) I think it's a scandal that there still isn't enough info out there. It's so very sad that someone would risk their life/sight/limbs through diabulimia. The relatives need help and support as do the sufferers themselves. The sufferers try to take control of their own body by starving it of the insulin it requires to live and thrive. The very sad thing is that the perception is that insulin makes them fat. Insulin is what keeps them alive and well, it's not the enemy. The only safe way to reduce insulin is to reduce carb intake so that less insulin is required. It is never ever a good thing to run high blood glucose levels in order to lose weight. A low carb diet and exercise are good plans to lose weight, insulin starvation is the worst possible thing you can do.

To anyone who has ever considered doing this, please, please don't. The results are horrendous and heart-breaking.

 

[Natalie1974]

http://www.dwed.org.uk/

Hi @sarahpench.

The above website offers lots of advice and support in regards to various diabetic eating disorders...you may find the info you're seeking there.

 

[sarahpench]

hi guys
I am wondering if there are any people suffering with diabulimia??
or if you are even aware what diabulimia is??
for people who are not sure, it is when a diabetic manipulates their insulin doses to lose weight this may include stopping altogether. i am trying to find out how many people are aware of this as I strongly believe there is not enough being done about this life or death situation especially in the UK. I would be grateful for any feedback.


thanks.
Sarah

hi guys
I am wondering if there are any people suffering with diabulimia??
or if you are even aware what diabulimia is??
for people who are not sure, it is when a diabetic manipulates their insulin doses to lose weight this may include stopping altogether. i am trying to find out how many people are aware of this as I strongly believe there is not enough being done about this life or death situation especially in the UK. I would be grateful for any feedback.


thanks.
Sarah

Thanks for the replies I am so shocked as joined a group on Facebook and there is over 1000 members where they give each other tips on how to so called get away with it and it's shocking to see how many deaths accur from this! It's heartbreaking and as I have discovered it is not medically recognised condition in UK where America has alot more options and help avaliable, iam going to take the issue to diabetes UK and see if there is a way of getting more help avaliable and more recognition x

 

[noblehead]

Very aware of the condition mainly due to being a member of this forum @sarahpench.

There probably isn't enough information/awareness about diabulimia and I'm sure much more could be done to make type 1's aware that this is a very serious condition, can I ask what you are hoping to do with the results of your survey?

 

[sarahpench]

@noblehead Yeah sure, I am hoping to prove that it is a problem that there is not enough being done to help the people suffering, I hope iam not offending anyone and i doubt they will take any notice of me trying to establish that this is a huge issue and as someone who has struggled with the emotional and physiological effect type 1 has I feel strongly that I have to try and help someway, I have spoken to numerous people who have expressed the last few days that they don't know who to turn to or Dr's just passing them off as "bad diabetics" it's really touched me how people feel so alone. I dont know if they will listen to me but I will give it my best they do and the more people's opinion can only help I hope ! I hope you are doing OK yourself x

 

[noblehead]

Thanks @sarahpench

Admire what you are doing and hoping to achieve, it is awful if Dr's are passing off patients with diabulimia as 'bad diabetics' and this needs to be urgently addressed, Good luck and best wishes.

 

[tim2000s]

Hi @sarahpench, it's disturbing that there is the community on facebook with that many participants. I agree that this condition needs all the publicity and help it can get. I'm happy to write a blog article on this topic (I don't have huge numbers of followers, but I can get it out to around 400-500 on twitter) to help raise awareness.

 

[sarahpench]

@tim2000

Hi @sarahpench, it's disturbing that there is the community on facebook with that many participants. I agree that this condition needs all the publicity and help it can get. I'm happy to write a blog article on this topic (I don't have huge numbers of followers, but I can get it out to around 400-500 on twitter) to help raise awareness.

Thank you!! I was gobsmacked and since then I've had 29 girls vary in age tell me they feel like they are on a slow suicide mission which is exactly what they are doing! I'd be extremely Greatford if you could my twitter name is pengellos I'd be very greatful if you could tag me! Thank you @noblehead I will give my all and keep you all updated

 

[tim2000s]

@tim2000

Thank you!! I was gobsmacked and since then I've had 29 girls vary in age tell me they feel like they are on a slow suicide mission which is exactly what they are doing! I'd be extremely Greatford if you could my twitter name is pengellos I'd be very greatful if you could tag me! Thank you @noblehead I will give my all and keep you all updated

Done.

 

[zand]

Well done for raising this issue Sarah. This is a cause that is close to my heart.

Whilst I don't have T1, I have suffered from a negative body image for most of my life and well understand the emotional affects of that. I can empathise even though I have never been down that route myself as I am not T1. Counselling is absolutely necessary to get to the root of the cause of the diabulimia as with any other form of eating disorder.

I can't help thinking that with the way the media keeps demonizing fat T2s the issue of T1 diabulimia is only going to get worse. If you carry a few extra pounds nowadays it seems it's OK to be vilified. It's not. Please tell your friends they are beautiful, they sound as if they are all young and that is beautiful in itself. They need to love and nourish their bodies not punish themselves in this way. They are worth so much more than being written off as bad diabetics. I hope each and every one of your friends will get the help they need to fully recover from this.

 

[sarahpench]

Well done for raising this issue Sarah. This is a cause that is close to my heart.

Whilst I don't have T1, I have suffered from a negative body image for most of my life and well understand the emotional affects of that. I can empathise even though I have never been down that route myself as I am not T1. Counselling is absolutely necessary to get to the root of the cause of the diabulimia as with any other form of eating disorder.

I can't help thinking that with the way the media keeps demonizing fat T2s the issue of T1 diabulimia is only going to get worse. If you carry a few extra pounds nowadays it seems it's OK to be vilified. It's not. Please tell your friends they are beautiful, they sound as if they are all young and that is beautiful in itself. They need to love and nourish their bodies not punish themselves in this way. They are worth so much more than being written off as bad diabetics. I hope each and every one of your friends will get the help they need to fully recover from this.

I agree nobody should feel like they have to risk their life for the sake of a few pounds! Thank you for the positive reaction guys, it's making me more determined than ever

 

[sarahpench]

Hi guys just got off the phone to diabetes UK and currently there is no help avaliable apart from a small independent team in Scotland and the fact is that have received numerous complaints that enough is not being done but due to lack off funding ect there is no plans to I am awaiting contact from policy holder qt diabetes UK who hopefully can tell me more

 

[zand]

Lack of funding? DUK have their priorities all wrong then. I would put this group top of my list of priorities for funding.

Edit: Yes I know it's all about numbers, and percentage wise diabulimics make up a small number. To me though most funding should go to those with greatest need. Instead, these young people are being blamed for their condition ('bad diabetics') It isn't their fault. They need support. I didn't need the booklet that DUK gave me via my surgery at diagnosis. I read it and realised the advice was bad (the very same advice that had caused me to become T2 in the first place) and threw it away. They could have saved that £5 and many others besides.

 

[noblehead]

Hi guys just got off the phone to diabetes UK and currently there is no help avaliable apart from a small independent team in Scotland and the fact is that have received numerous complaints that enough is not being done but due to lack off funding ect there is no plans to I am awaiting contact from policy holder qt diabetes UK who hopefully can tell me more

Hopefully so @sarahpench

I get their Balance magazine being a member since the days when they were called the BDA (British Diabetic Association), they've covered the subject of diabulimia many times before in their magazine so they should be more supportive of your cause.

Do let us know what they say.

 

[sarahpench]

Hopefully so @sarahpench

I get their Balance magazine being a member since the days when they were called the BDA (British Diabetic Association), they've covered the subject of diabulimia many times before in their magazine so they should be more supportive of your cause.

Do let us know what they say.

Will do I was taken aback by the response it was a member of the carling team who did say he was aware of this issue but couldn't provide me with the answers I was looking for as he didn't know them . Hopefully somebody higher up the chain can help out a bit more x

 

[sarahpench]

Lack of funding? DUK have their priorities all wrong then. I would put this group top of my list of priorities for funding.

Edit: Yes I know it's all about numbers, and percentage wise diabulimics make up a small number. To me though most funding should go to those with greatest need. Instead, these young people are being blamed for their condition ('bad diabetics') It isn't their fault. They need support. I didn't need the booklet that DUK gave me via my surgery at diagnosis. I read it and realised the advice was bad (the very same advice that had caused me to become T2 in the first place) and threw it away. They could have saved that £5 and many others besides.

Yes you are right I personally think that's going to be the biggest battle is persuading them they are the people who need the help the most because it is a minority but like I said to duk I can't belive there is not a section on thier entire website which I find shocking x

 

[zand]

Yes you are right I personally think that's going to be the biggest battle is persuading them they are the people who need the help the most because it is a minority but like I said to duk I can't belive there is not a section on thier entire website which I find shocking x

Minority yes, but they are so young and have so many years left to live - if they are helped. DUK should not turn their back on them.

 

[Juicyj]

Hi Sarah,

Well done for undertaking a project which has the potential to impact on so many lives, it's admirable of you to do so.

I have learned more about it from this forum, where people who are suffering have come here for support. As a mum I feel a maternal instinct to try and help those in need, feeling that if it were my child in need I would move heaven and earth to help them. This week I had the unfortunate event of my pump infusion set not working and went from 6.4 in the morning to 26 in the afternoon and evening until I was able to get home to change it over, the next day I felt like I had the worst hangover ever. It gave me in this short space of time a glimpse of how poorly you can become with running such high levels, to know that there are people who are purposely doing this to themselves just to maintain a slim figure that is reflective of the culture we live in today was shocking. If we could only turn off the 'false images' the media portrays and the fact that the majority of pictures we see are photo shopped and distorted to give this false image shows how shallow society has become.

However living this way for a type 1 diabetic is dangerous and damaging.

My personal advice for anyone who is suffering is to put yourself first, take small steps to putting it right, start testing and taking insulin for food, see insulin as your lifeline to better health, it is our insurance policy for the future, without it our bodies will become useless. Ignore the media, ignore shallow friends who make passing flippant comments, I know girls are particularly sensitive to outside influences, however try and believe in yourself, have strength and courage to be your own person, try and find someone you can confide in who you can speak to about this, don't be afraid to ask for help.

 

[sarahpench]

Minority yes, but they are so young and have so many years left to live - if they are helped. DUK should not turn their back on them.

If anything they are making me more determined that something has to be done! We will win regardless of funding issues it's always the excuse, but am sure even putting information on a website they can surley do I will look into setting up a petition x