Support?

emxfoxx

Newbie
Messages
1
Type of diabetes
Type 1
Treatment type
Insulin
New to forums so bear with me. I am a 19 year old female who’s been T1D since I was 4.
T1D has been all I’ve ever known. I’ve noticed as I get older the lack of support, rude comments and being blamed for my condition has only increased.
For the past year I’ve been diabulimic, felt as though it was a way for me to ‘punish’ my diabetes and at least get something good from it: weight loss.
For the past few months I’ve been looking for others experiencing the same thing/ feelings and have seemingly found nothing but medical journals and the usual ‘just lower carb intake.’
I have never met anyone IRL with diabetes and have little familial / friend support.
Just looking for anyone who feels the same way or has any useful info?
 

JoKalsbeek

Expert
Messages
5,981
Type of diabetes
I reversed my Type 2
Treatment type
Diet only
New to forums so bear with me. I am a 19 year old female who’s been T1D since I was 4.
T1D has been all I’ve ever known. I’ve noticed as I get older the lack of support, rude comments and being blamed for my condition has only increased.
For the past year I’ve been diabulimic, felt as though it was a way for me to ‘punish’ my diabetes and at least get something good from it: weight loss.
For the past few months I’ve been looking for others experiencing the same thing/ feelings and have seemingly found nothing but medical journals and the usual ‘just lower carb intake.’
I have never met anyone IRL with diabetes and have little familial / friend support.
Just looking for anyone who feels the same way or has any useful info?
Not useful, sorry, but it seems like you're being blamed the way T2's usually are, for "bringing it upon themselves". Though when people insist on being ignorant, I doubt telling them you're a T1 isn't going to help any, they probably wouldn't know the difference. (Nor that T2's aren't exactly to blame for their diabetes either.)

Look... Diaboulemia has a name, because it exists. There are people out there who have it, enough of them for it to have become an actual diagnosis. That alone tells you, you're far, far from alone. And while the T2's are in the majority here, I sincerely hope T1's 'll pop up soon who have been where you are and can be of use to you, both in support as just providing strength in numbers.

Diabetes isn't something you can punish, it doesn't care what you do to yourself... And you already know you're cutting off your nose to spite your face. That doesn't change anything about how you feel though. And weight loss isn't always a good thing, which you also know. Still feels like you have some control over this, somehow, if you control your weight, right? The facts don't matter, it's how you feel that fuels all this, and feelings defy logic at just about every turn.

I have an entirely different mental issue, from which it seems all my other issues stem (ADHD caused severe anxiety and almost lethal depression), and I have been trying since this summer to get help, now I finally know I've been misdiagnosed for three decades... But here in the Netherlands all ADHD shrinks seem to focus on children with the condition, there's very few places that handle adults, and the waiting list is absolutely insane. I imagine it's about as hard to find someone who specialises in what you're going through, as it's not exactly a general topic either... But I am hoping you have a diabetes team or doctor you can get in touch with who can refer you to a diabetes psychiatrist or psychologist. Antidepressants may help, and god knows I'd be on them if they didn't clash with other medical issues I have. They can make life a lot more bareable. But having someone to talk to, someone who doesn't throw carb-nonsense and blame your way, and actually listens before preemptively shutting you down with a weird, based-on-nothing opinion... I think it'd be good. If you haven't yet, do seek professional help, on top of searching for others in a similar situation... You're more than worth the effort, you truly are.

Hugs,
Jo, who is quite useless in all of this otherwise

PS: She wasn't diabetic at the time she wrote her first books, and has been staving off T2 diabetes for a while now, but she has dealt with a bunch of things, (like eating disorders and depression) that might be recognisable for you: Jenny Lawson. I took great comfort from her books, and you might too. https://thebloggess.com/lets-pretend-this-never-happened-a-mostly-true-memoir/
 

EllieM

Moderator
Staff Member
Messages
9,322
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
forum bugs
Hi @emxfoxx and welcome to the forums.

I can't help much though I suspect I may have had some form of diabulimia in my teens. (This was pre glucometer and basal/bolus, so I was on fixed doses and fixed carb amounts and though I was supposed to urine test I went through several years when I pretty well ignored my diabetes. I remember being pleased that my weight went down to fashionable levels, but think it was too low for my body because I went several years without periods which, in retrospect, wasn't a good sign. )

When I finally went to a new clinic in my early twenties they were supportive and gave me a glucometer and a basal/bolus regime, suggesting that it would be good to get my average blood sugar down from the teens .

Though I've had less than stellar diabetic control in periods since then, it's never been as bad, and luckily years of mostly reasonable control seem to have corrected any damage I did in my teens. I've since come to the conclusion that I prioritise my bgs over my weight. But I'm lucky that my mother was T1 (I was diagnosed aged 8) and I've met several other T1s in real life. (My current dentist is a T1 :).)

As a young adult at 19 it can be quite hard to find your place in the world and diabetes just makes it harder. I'm really sorry that your clinic aren't helping you, they should be supportive rather than blaming you for a condition which is 100% not your fault. Are all the people in your clinic unhelpful, or can you ask to speak to someone more sympathetic? Diabulimia is unfortunately quite common in young T1s so you are definitely not alone and your clinic should be experienced with it. You deserve help rather than criticism and although things seem bad now I suspect/hope that they will improve in the future. (If only because you won't be a teenager any more and life is genuinely easier when you are older).

Diabetes is a pain, and teenagers are at peak risk of burn out. From personal experience, things can and do get better. My recommendation would be to push for help/counselling from your clinic. You deserve their help.

Lots of virtual hugs.
 
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In Response

Well-Known Member
Messages
3,485
Type of diabetes
Type 1
Treatment type
Pump
Not useful, sorry, but it seems like you're being blamed the way T2's usually are, for "bringing it upon themselves". Though when people insist on being ignorant, I doubt telling them you're a T1 isn't going to help any, they probably wouldn't know the difference. (Nor that T2's aren't exactly to blame for their diabetes either.)
I did not read the OP’s comments in the same way as you.
As someone with Type 1 diabetes, I am very aware of the “blame“ we get for not being able to correctly and always maintain good blood sugars. People who do not live with the effort of doing the job of a pancreas 24x7 do not realise how much physical and mental effort is involved and how difficult it is.
This results in HCPs blaming us when our HBA1C is too high or even too low.

This has nothing to do with type 2 or bringing Type 1 on ourselves. It is about bringing complications on ourselves.
 

Zhnyaka

Well-Known Member
Messages
649
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
Homophobia, racism, sexism
What do you mean by "rude comments and being blamed for my condition"? Is someone accusing you of having diabetes?
I was 8 when I got diabetes, but my attitude towards it is very strange and atypical, because I like jokes about my diabetes and I find it funny to teach friends how to give injections correctly (at this point we may even be drunk)
I would like to provide support, but the only thing that comes to my mind is to say, "stop communication with people who offend you." I don't know if this is possible in your case. But you can always find new friends, for example, by signing up for some kind of interest club, where you will discuss what you like, and not your diabetes.
 

JoKalsbeek

Expert
Messages
5,981
Type of diabetes
I reversed my Type 2
Treatment type
Diet only
I did not read the OP’s comments in the same way as you.
As someone with Type 1 diabetes, I am very aware of the “blame“ we get for not being able to correctly and always maintain good blood sugars. People who do not live with the effort of doing the job of a pancreas 24x7 do not realise how much physical and mental effort is involved and how difficult it is.
This results in HCPs blaming us when our HBA1C is too high or even too low.

This has nothing to do with type 2 or bringing Type 1 on ourselves. It is about bringing complications on ourselves.
Ah, thank you. That does make sense, actually... Knowing how erratic blood sugars can be, and how easily influenced by just about everything... It seems like an Herculian effort, getting things to be in range when your pancreas quit on you. Bottom line is the same, though, I think.... A lot of people tend to have an opinion when they have far from all the information required to form one, and it can make it hard to find someone who'll simply take the time to listen, and offer non-judgemental comfort.

Anyway, thanks again for clarifying!
 

JAT1

Well-Known Member
Messages
565
Type of diabetes
Type 1
Treatment type
Insulin
New to forums so bear with me. I am a 19 year old female who’s been T1D since I was 4.
T1D has been all I’ve ever known. I’ve noticed as I get older the lack of support, rude comments and being blamed for my condition has only increased.
For the past year I’ve been diabulimic, felt as though it was a way for me to ‘punish’ my diabetes and at least get something good from it: weight loss.
For the past few months I’ve been looking for others experiencing the same thing/ feelings and have seemingly found nothing but medical journals and the usual ‘just lower carb intake.’
I have never met anyone IRL with diabetes and have little familial / friend support.
Just looking for anyone who feels the same way or has any useful info?
Welcome to the forums @emxfoxx. I didn't have Type 1 at 19 but for other reasons suffered alienation from all significant others, family and friends, when I was 16. I fell into a massive depression for which I was angrily blamed (before the dawn of current understanding). So I know what it's like to feel utterly alone in the world. I sympathize with what you are experiencing and agree with the advice to stay away from people who put you down. I hope you will find strength and belief in the value of yourself so that you pull through this and realize that sometimes the worst of days turn out to be the rock bottom beginning of the best of times.
 

EllieM

Moderator
Staff Member
Messages
9,322
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
forum bugs
Hallo again @emxfoxx I've found some links (thanks to @Antje77 who looked them up last year before she retired from the mod team)
The site is US based but still looks worth checking out .

Here's the open Fb page of Diabulimia Helpline: https://www.facebook.com/DiabulimiaHelpline
And here's their website, looks very useful, lots of information even if it's US centered: http://www.diabulimiahelpline.org/
They have a closed facebook group, which you'll need to apply to join
https://www.facebook.com/groups/20504517571