So what is the deal with all this diabulimia stuff over the past couple of weeks? I just dont understand why now is it popping up all over the place? Did some famous persons kid get called into the principals office for not taking their insulin or what? Its all over the news, the paper, the internet and yes, it is even in TIME magazine. Can you believe that? Ok maybe that is enough questions for one blog.
But, I want to know why! Dammit.
People are contacting me like crazy about this Diabulimia phenomenon that has hit the country like the plague. Do I look like the spokesperson for it or something? Just because I wrote a blog about it. NO!
BUT, Anyway, yea now people that don’t take their insulin finally have some weird name to hide behind DIA-BU-LEE-MI-AH. I hate to break it to the world but, people with diabetes all over the world have been probably manipulating their insulin doses since insulin was invented.
People that manipulate their insulin doses need to get help, and they need to get it fast. With a medical professional that knows about diabetes. If you know someone that is doing it or if you think someone is… try to get them to seek help. Please! before its too late! It is a silent killer which causes all sorts of complications and even coma or death.
June 30th, 2007 at 5:11 pm
CNN started it when they published an article about it.
June 30th, 2007 at 9:29 pm
Please trust me when I say I know EXACTLY how you feel. I blogged on the topic and I’ve been contacted a number of times since. It’s a weird place to go back to .
And you’re right, it’s odd for those of us who were doing it - to extremes -befort it had a name.
June 30th, 2007 at 9:37 pm
There were so many posts made the past couple of weeks on that actual diabulima post I made. I hope that people will seek help…here is the link to the FIRST POST ABOUT DIABULIMIA There are 29 comments right now.
July 4th, 2007 at 10:48 pm
The Associated Press distributed the story on June 17. Source: ap.org and a Archive Search there for diabetes. The story was picked up by Fox News, CNN, Detroit Free Press, and many others news organization.
July 5th, 2007 at 5:49 am
hi. hope u dont mind me contacting u, but i read ur blog and u talk A LOT of sense. i’m an 18yr old girl and was diagnosed with type1 in january last yr. i had NEVER heard of ‘diabulemia’ before today when i saw a story about it on the news and im totally shocked!
i am meant to take insulin 4 times a day, 1lantus and 3novorapid injections. but, i NEVER do this. on a good day i will only skip 1dose of novo but most days its normal for me to just have my 1dose of lantus.
i never in a million years thought that i could have something wrong with me, i never even knew other people did it. i dont know 1 other person with diabetes so i’ve never been able to compare circumstances until now.
i’ve read a lot of scary things today, and i really dont know what to do. if u dont mind me asking, how did u get over ur problem? was it something u had to address mentally or were u helped in some other way.
if u do mind me asking, i’m really sorry. i dont mean to pry or cause offence. i know you’re not a doctor and you dont have to advise me, im just after a little friendly advice.
if you could reply that would be great,
thanks for taking time to read this (i know i’ve rambled on a bit)
rachel x
July 8th, 2007 at 7:01 am
Hey Rachal,
Don’t be ashamed of your reaction to the insulin you are taking (and not taking). It’s not a mental disorder, either. It’s actually your body reacting to the insulin. You got Type 1 diabetes because your body rejects insulin. You probably have insulin antibodies. Have your doctor check you for IAA. Then — when the test comes back positive — which is will — tell him you’d like to take an insulin that won’t cause you to develop more insulin antibodies. The genetically modified human insulins Big Pharma sells are ALL these types of insulins. You will have to import *highly purified porcine* insulin from the UK, most likely. I only offer this advice because I am a diabulemic and I have been for the past 15 years. When I started using the porcine insulin — The control I felt over my blood sugars was unlike any time in the previous 22 years. I realized the movement of my blood sugar was slower — but my appetite was controlled and I didn’t get frustrated when I felt it moving too quickly. It’s a lot different and I cannot tell another diabulemic how things will feel for them but I can say changing to a natural vertebrate insulin, rather than the genetically engineered CRAP Big Pharma pushes made **ALL** the difference. If you’d like to know more about how to try it or what to discuss with your doctor — I’d be happy to lend some advice. But in the meantime — please realize — your diabulemia is not a **mental** condition. It’s a result of your body rejecting the insulin that caused your disease. You’re doing what feels right (even if it causes complications sooner, rather than later). Yes — diabetes sucks but it doesn’t have to
My email is AllieB2@aol.com and my name is Allie.
July 12th, 2007 at 9:07 pm
Allie: The problem Rachel was talking about recovering from was probably not diabetes itself. I didn’t get the impression that she thinks she can get “over” diabetes. I’m not quite sure how pork insulin solves the problem of wanting to skip insulin injections in order to lose weight. That’s what diabulimia is… I guess I don’t understand your comments.
July 17th, 2007 at 2:13 am
Hey Allison,
Factors that contribute to diabulemia can be adjusted. I personally noticed a difference when I changed from GM synthetic human insulin to pork insulin. I only offer it as a suggestion - not a rule. Sometimes the only way to change a situation is to do something differently.
July 23rd, 2007 at 6:12 pm
I have had eating disorders and diabetes for a long time, “diabulimia” being a big part of it. I am now in my late thirties and have numerous debilitating complications. I implore any young person out there who is tempted to or is currently skipping or reducing insulin to get help ASAP. Believe me, you do NOT want to have the problems I do at this age. PLEASE talk to your doctor, therapist, parents, etc.
August 3rd, 2007 at 8:05 am
[...] A little over 2 weeks ago I posted something about diabulemia on site where diabetics exchange their feelings, frustrations, and experiences with the disease. Two Type 1 diabetic women took the time to write me a very thoughtful hate mail. Hate is a strong word but these are some strong accusations. For starters, they said, “There ain’t no such word as diabulemia. It’s called diabetic stupidity.” That is cut directly from the email, and as you can see - it was written with an arrogant disregard for the 450,000 people suffering from this serious condition. [...]
October 4th, 2007 at 8:56 am
Just two days ago i was working out at the gym and I saw the word diabulemia come across the bottom of the screen. I thought that looks interesting and as I worked out I continued to read the discussion that was going on…I thought, WOW! now they have a name for it. I was diagnosed in 7th grade with type 1 diabetes and my entire senior year I did not take my insulin correctly so i wouldn’t gain weight. I hate to admit it but I cared more about thinness then my health. What made me stop? I started college and I said to myself,”self, if you don’t want to screw up your life then you need to take care of yourself and I did from that day on. Now I am approaching 42, I have two beautiful healthy daughters, two eyes I can see out of, both my feet and travel all over the word telling people about Jesus. Life is good and it is because I learned to take care of myself. This is not a disease…Diabulemia is a choice…A STUPID CHOICE!
February 27th, 2008 at 3:18 am
i’m getting pissed off at ppl who keep saying that you get diabulimia because of an alergic reaction to insulin?? thats so stupid. i’ve had diabetes for 8 years. first few years i took my insulin really well and had very good blood sugar levels. but then in my teens all i wanted to be was skinny, so i stopped taking my insulin all together. obviously i ended up in hospital. IT IS A MENTAL ISSUE NOT AN ALERGIC REACTION. it feels like a trap, once you stop taking insulin you loose weight, you can eat what you want, you feel normal, you get depressed from high blood sugar so you want to loose more weight - it is a viscious cycle. it may as well be called anorexia. and i am very greatful for the person who has given it a proper name “diabulimia” THANKYOU i now know what i can diagnose myself with and i can now search on the internet and talk to other ppl who have had this experience.
i have only recently started taking my insulin properly because i have just got engaged and want children - it is time to grow up
October 1st, 2008 at 8:53 pm
I have a daughter that has diabulimia however I have never heard term prior to about 3 weeks ago. My daughter has receivd care from many endocrinologist, psychiatrist, counselors, eating disorder clinics, nurses, etc. and never has one of them told me or my daughter that there is this disordered eating condition that is much more deadly than the diabetes. Never in all of the diabetic education classes we both attended when she was first diagnosed at 15, did anyone mention that I needed to be cognizant of the onset of this condition. Also, none of the professionals at the extememly expensive clinics, ever connected the diabetes and the eating disorder to one another. In fact they did just the opposite.
ALl patients and parents should be told about and educated about diabulimia. Finding out after the condition is entrenched is way too late. Please view my very novice blog and offer suggestions, responses, etc.
December 11th, 2008 at 7:32 am
I heard of diabulemia on the doctor Phil show…I have been a type 1 diabetic for 18 years and never heard of this. but I sa the show and wanted to lose weight so i ommitted alot of my insulin by the 7th day i was so sick I thought I was gonna die….How do all these people stay feeling o.k
January 21st, 2009 at 1:33 am
I am known Type II diabetic for past 24 years - taking insulin and oral meds for past 22 years. I have experienced much weight gain.. sugar goes up….insulin increased - weight goes up…sugar goes up….insulin increased - weight goes up….what a cycle!! Would struggle to lose weight…one year I lost 45 pounds…. the same 15 pounds..3 times….My blood sugars have never been “well” controlled. Even when sugars would drop….after a few weeks of weight gain….they would climb right back to around 300. This cycle has continued most of my diabetic life. Recently added Januvia….sugars dropped to below 200… now after about 4 mos….sugars increasing back to 300 and sometimes as high as 500 while using all my meds. I follow diabetic diet as best I can. Right now not getting enough exercies as I have many diabetic complications. However, 2 yrs ago, I stopped using my insulin completely. I had a goal in mind and I felt great. I started walking….only a few minutes at first.. I gradually got up to walking 4 miles a day.. then 8.. then 12 (on treadmill). I then started walking 1 mile to YMCA..did 40 minutes of Nautilus….then an hour of water aerobics…then walked back home (about 1 Mile. I lost 53 pounds (in 4 months)…all without insulin but continued taking my metformin. I felt like amillion dollars and was told by many friends that I looked like a million dollars….I was my old “younger days” self…smiling all the time and made others feel good just to be around me. My sugars stayed around 200. THen all of a sudden I got sick. I had weeks of feeling faint..and felt like I was going to pass out. One evening.. I felt light headed and nauseous….in less than 12 hours…my body collapsed…I fell unconscious..and hit the floor, lost control of my bowels,, I was a mess!! Needless to say, I was transported to hospital by ambulance. Somehow, I had become severely dehydrated.. blood sugars was around 600…my GFR was 17. I spent 5 days in hospital. Buy why… I felt and looked the picture of health…Now, I had to start back on my insulin….which dosage has increased from 20 LANtus AM & PM, to 50 units AM & PM with Humalog for before meals….and as I said….now have had Januvia added. Sine that time….I have regained 23 pounds. I feel like heck and have an ongoing mental battle and beat myself up every day…..about exercising to lose weight. I cannot reduce my food caloric intake any lower even though I am tempted to. I have been considering stopping the insulin again….and really pushing myself to the point of collapse again. I am becoming extremely depressed over the battle of the weight gain…most of which is fat around my middle….I know I can’t give up — I have to do something to fight back….my docotr says I will never get off insulin…..but…..I have read that it is possible with lifestyle changes……for some….but what about me??
December 31st, 2009 at 7:57 pm
My daughter has been on insulin since she was 13, she is now 30, and he Dr. has told her that her body is rejecting the insulin. Does this happen often? The Dr said that she was have to start taking pills along with the insulin.
January 2nd, 2010 at 11:23 am
Dolores,
Its not that it is rejecting it. She is becoming more insulin resistant as she gets older. Its almost like a type 2.
April 1st, 2010 at 6:11 am
Hi.. I’m a 15 year old type one diabetic and diabulimic. I was diagnosed with type one at age 11 and have been diabulimic off and on ever since. It’s a struggle with my mind, body, and soul everyday. I’m well aware of the risks and realize it’s a choice, but what everyone needs to realize is I didn’t ask for this eating disorder. I have a warped image of myself and am willing to risk my sanity and health to be thinner. Type 2 diabetics anger me so much. It’s not fair. I would rather be type 2 than type 1 any day. Type 2’s can reverse this. You can get healthy and lose weight and regain control of your bloodsugars. I CAN’T. I have to wait around and preserve myself as best as possible until a cure is developed. I wish people would realize how hard it is to be a teenager and diabetic AND diabulimic. I have to see these healthy, thinner girls run around school all day and at soccer practice and no matter what I do I can’t seem to be okay with myself. Well theres my two cents.