diabulimia

zoze_j · Feb 19, 2016

When I was in my early teens, I was stupid enough to do this. I'd deliberately miss injections, or do virtually no insulin - just enough to stop me feeling like absolute s***. I was also eating virtually nothing, so I figured it wasn't too dangerous to just stop taking my insulin. What a moron, right?
I don't think there is enough out there about this, mainly the dangers of it - when I did this, I was pretty naive to the potential long term effect on my health. It was only when the diabetic clinic picked up on it - my ever decreasing weight on each appointment - that they then sat me down & told me what I was doing to myself.
All I can say is I'm thankful to God every day that stupid time in my life hasn't (so far) cause serious complications years later.

sarahpench · Feb 19, 2016

Juicyj said:
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.

Thank you! I just feel if we sit back and do nothing this issue will keep on rising taking life's of the most vulnerable of people who genuinely can't help it even from talking to people who suffer with this to say themselves it's a suicide mission breaks my heart, like you have said running that high is horrible as am sure we have all experienced and to be doing that to your own body I can't imagine the hell this is for suffers! Thank you for your replies glad I'm not alone in this x

sarahpench · Feb 19, 2016

zoze_j said:
When I was in my early teens, I was stupid enough to do this. I'd deliberately miss injections, or do virtually no insulin - just enough to stop me feeling like absolute s***. I was also eating virtually nothing, so I figured it wasn't too dangerous to just stop taking my insulin. What a moron, right?
I don't think there is enough out there about this, mainly the dangers of it - when I did this, I was pretty naive to the potential long term effect on my health. It was only when the diabetic clinic picked up on it - my ever decreasing weight on each appointment - that they then sat me down & told me what I was doing to myself.
All I can say is I'm thankful to God every day that stupid time in my life hasn't (so far) cause serious complications years later.

Thank you for being open and honest, I think that's part of it is educating people how serious this is, and some people have never heard of it so don't even know they are doing this and it is a condition! Really glad you are better now

zoze_j · Feb 19, 2016

sarahpench said:
Thank you for being open and honest, I think that's part of it is educating people how serious this is, and some people have never heard of it so don't even know they are doing this and it is a condition! Really glad you are better now

It really is so serious, and I'm mortified there are facebook groups dedicated to it! I definitely agree, there really needs to be more education to girls, especially, about the dangers of doing this to themselves.

I was the worst example of a diabetic growing up, I'm amazed I'm still here to be honest with no major complications. I mean I've damaged my eyesight quite a lot - I used to have perfect vision & now wear glasses 24/7 as I'm so short sighted it's unreal

Finsky · Feb 19, 2016

sarahpench said:
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

Unbelievable ...why is everything down to 'funding'...how much does it cost for doctors and nurses ask extra questions and talk about things...at least it would be good starting point. Just talking about it when you are discussing about patient diabetes care might be enough to raise alarm bells and avoid further casualties. After all it is their job and they get paid for it.
For set up specialized units for such a issue is another matter...that would come under 'funding'...but still such a important thing to get under control! Money is wasted in many areas , where it could be used to fund more important things.

phoenix · Feb 19, 2016

I also feel very concerned and very helpless about this when people arrive on the forums and seem to be 'suffering' from it ie what help or advice to give.
I do think that DWED are the people to contact because they have been trying to create awareness and lobby for resources for several years. They don't have many resources themselves though.
There is one current MP that has mentioned Diabulimia in parliament . Sadly he has personal reasons for this(so in two minds as to whether it is a good idea to contact him) http://www.dwed.org.uk/about-us/memory ( I still get tears in my eyes when I read it)

sarahpench · Feb 19, 2016

I have seen this glad you posted the link everyone should have a read, as of yet no-one from the charity has got back to me and still no update from duk, I have contacted my own mp to see if there is anything he can do to help! Hopefully we can get somewhere xx

Jaylee · Feb 19, 2016

I spent 3 years in a Surry dance school in the late 1980's.
I've seen a fair bit regarding eating disorders. Including one talented non D living souly on supliment pills..

A number of years ago there was a late night documentary (channel 4?) following a girl with diabulimia. Sadly, she was near blind...

I feel there is a lot of good info out there by people that have been through it & turned things around for the better. It's just knowing where to look for the right support...

Jaylee · Feb 19, 2016

zoze_j said:
It really is so serious, and I'm mortified there are facebook groups dedicated to it! I definitely agree, there really needs to be more education to girls, especially, about the dangers of doing this to themselves.

.. & the lads too?? I've also heard there are more & more acounts of boys trying the same thing.

zoze_j · Feb 19, 2016

Jaylee said:
.. & the lads too?? I've also heard there are more & more acounts of boys trying the same thing.

Of course, I just said girls especially but on the whole, girls are more concerned about weight/appearance than guys. That's obviously not saying that there aren't cases with men, but just as a majority thing.

Jaylee · Feb 19, 2016

zoze_j said:
Of course, I just said girls especially but on the whole, girls are more concerned about weight/appearance than guys. That's obviously not saying that there aren't cases with men, but just as a majority thing.

It's cool.. I just know guys have image issues too.. A few have cropped up on here asking questions. A worrying trend whatever gender that needs addressing..

YorkshireAli · Feb 20, 2016

zoze_j said:
When I was in my early teens, I was stupid enough to do this. I'd deliberately miss injections, or do virtually no insulin - just enough to stop me feeling like absolute s***. I was also eating virtually nothing, so I figured it wasn't too dangerous to just stop taking my insulin. What a moron, right?
I don't think there is enough out there about this, mainly the dangers of it - when I did this, I was pretty naive to the potential long term effect on my health. It was only when the diabetic clinic picked up on it - my ever decreasing weight on each appointment - that they then sat me down & told me what I was doing to myself.
All I can say is I'm thankful to God every day that stupid time in my life hasn't (so far) cause serious complications years later.

Not long after I was diagnosed, twenty years ago (and I was early 30s, old enough to have known better) I did this too, though at that time, there wasn't a name for it. I thought I'd found the perfect solution for losing baby weight and over a period of about three months I lost nearly four stones. The fact that I felt pretty rubbish all the tiime I overlooked as my dress size reduced by the week - my (now ex) husband was overjoyed to have a skinny wife and was much more attentive. It was only when I saw my diabetic consultant and had the dangers spelled out in graphic terms that I was shocked into looking after myself properly.

It's a very easy trap to fall into if you don't know any better, and if being thinner is all-important. I look back now and can't believe I was so stupid, and I hope that I haven't done myself too much long-term damage. I do agree that more needs to be done to increase awareness and help for those who might be tempted to follow such a self-destructive path.

Incidentally, my ex still refers to that time as being when I looked my best, despite knowing that I was risking my life. Just one of the reasons he's my ex...!

zoze_j · Feb 22, 2016

YorkshireAli said:
Not long after I was diagnosed, twenty years ago (and I was early 30s, old enough to have known better) I did this too, though at that time, there wasn't a name for it. I thought I'd found the perfect solution for losing baby weight and over a period of about three months I lost nearly four stones. The fact that I felt pretty rubbish all the tiime I overlooked as my dress size reduced by the week - my (now ex) husband was overjoyed to have a skinny wife and was much more attentive. It was only when I saw my diabetic consultant and had the dangers spelled out in graphic terms that I was shocked into looking after myself properly.

It's a very easy trap to fall into if you don't know any better, and if being thinner is all-important. I look back now and can't believe I was so stupid, and I hope that I haven't done myself too much long-term damage. I do agree that more needs to be done to increase awareness and help for those who might be tempted to follow such a self-destructive path.

Incidentally, my ex still refers to that time as being when I looked my best, despite knowing that I was risking my life. Just one of the reasons he's my ex...!

I'm super glad to hear that! What is awful is that he preferred you "skinny" despite the fact it was downright dangerous! Silly man!

And I completely agree, it really is too easy to fall into that trap, and then remain stuck in the cycle until the penny drops.
I think it would be a great idea for Diabetes UK to run some kind of awareness campaign. Obviously the mention of a facebook group is shocking, because I dread to think how many young girls (and guys) are doing this to themselves, quite likely blissfully ignorant of the potential long term effects. I'm like you, and consider myself lucky to have come out of it with very minimal complications - so far. Though every day I worry about the future and what could happen because of what I did.

SamFergusson · Feb 29, 2016

Hi @sarahpench as many have already said it is great you're working hard to get more information & awareness out about this issue!
As heartbreaking as it all is I can also say I know just how easy it is to be drawn into that way of thinking. I have never put myself at risk, but I remember a few years ago I asked my GP if they could advise on something to aid me loosing weight & I was told that having diabetes was one of the main factors for me gaining weight & that every injection I had contributed to adding to the problem!...... Seriously!!
No wonder there are so many people turning to such drastic measures when some GP's are making comments like that!
I hope we can get the word out there & help people avoid the risks x

Juicyj · Mar 1, 2016

I think the attitude of doctors and these sort of comments are shocking - what type 1's need to hear is constructive advice for not gaining weight, so exercise and diet. Until this gets more awareness and more funding is targeted at helping those in need then this issue will be banded around in 'closet groups' behind the social curtains of FB and the like. Does anyone know if Theresa May responded to DWED's letter ? She would be a brilliant starting point, if not, maybe another letter ? It's easier to get someone with type 1 to empathise with this issue and to then create awareness.

L3wisr · Mar 1, 2016

I had never heard of it before visiting this forum!

Tbh, I believe a lot more can be done to teach children of early ages about the diseases that are prevelant in society. Before I was diagnosed I was completely oblivious to diabetes and how bad certain things are...in hindsight I would have loved to have learnt more about nutrition too - pros and cons

sarahpench · Mar 10, 2016

Hi everyone hope everyone is well sorry haven't been around been on nights for weeks but back to normal, so here's an update basically diabetes UK don't want to know or totally uninterested stating: lack of funds also they belive it is more a mental health matter and also are unwilling to help or provide any more information and suggested I speak to a group in Scotland who have set up a support group although they are doing amazing work it is relatively small, Im so disappointed in diabetes UK all I was asking for was for there to be a section on thier website dedicated to this matter as the more I research the larger the problem is! I have sent emails to my local mp to see if he is willing to help cross fingers he will. Still trying and hopefully one day diabetes UK will be willing to take this matter seriously, I understand funding is an issue but am sure to put a section on a website wouldn't harm them, they attract so many visitors to thier site I really believe they would be the place to start with raising awareness xx

tim2000s · Mar 10, 2016

I have to admire t to being surprised at DUK. Given what was presented at the conference and what my research found about the incidence of all eating disorders being increased by 250% with t1, it seems daft that they aren't interested.

TorqPenderloin · Mar 10, 2016

I'm a bit passionate about this topic not because I've directly struggled with it, but because I've indirectly struggled with it. Prior to my diagnosis I was very ignorant to what was happening to my body. It's obvious now, but it wasn't at the time.

The first picture (blue shorts) shows me a few years prior to my diagnosis. I weighed about 200 lbs in that picture (I'm 70" tall). The second picture (left) shows me a few weeks before my diagnosis when I weighed about 180 pounds. The right side of the picture shows me after I was diagnosed and after I understood what had happened to my body.

This is a perfect example of why I advocate people using more than BMI and the scale to measure their success. At 200 pounds I was considered "Obese" which obviously isn't the case. Even at 180 I was considered "Overweight," but I had lost 20 pounds of muscle as my body was literally eating itself to survive (and not in a good way).

sarahpench · Mar 10, 2016

tim2000s said:
I have to admire t to being surprised at DUK. Given what was presented at the conference and what my research found about the incidence of all eating disorders being increased by 250% with t1, it seems daft that they aren't interested.

Im still shocked

tim2000s said:
I have to admire t to being surprised at DUK. Given what was presented at the conference and what my research found about the incidence of all eating disorders being increased by 250% with t1, it seems daft that they aren't interested.

diabulimia

do you think there is enough information regarding diabulima?

yes

no

do not know what it is

Well-Known Member

Well-Known Member

Well-Known Member

Well-Known Member

Well-Known Member

Expert

Well-Known Member

Oracle

Oracle

Well-Known Member

Oracle

Well-Known Member

Well-Known Member

Well-Known Member

Expert

Well-Known Member

Well-Known Member

Expert

Well-Known Member

Well-Known Member

Attachments

Privacy & Transparency

Privacy & Transparency