Hi all, please share your story of Diabulimia with those of us who are cured and who are still battleing. please reply to this discussion, tell us everything you feel comfortable with sharing and if you have come out of it, please tell us how you did so and if you are still having difficulties please share them with us so we can help each-other! Thank you so much.
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hello, im 26 years old ive been diabetic for 14 years. when i was a freshman in college i started having problems with my weight and insulin. at first i would only take my long acting insulin and skip my novolog completely, then i stopped taking insulin altogether. i liked it because i could eat whatever i wanted in front of people so no one could acuse me of starving myself. after awhile i began to notice my eyesight getting worse. i was dehydrated, irritated all the time, exhausted. my mother eventually approached me and encouraged i speak to someone and i went into therapy. my endocrinologists have always said, “a skinny diabetic is a good diabetic” and i kind of thought if i just don’t eat its almost like i dont have diabetes, and my issues with food escalated ever since. i haven’t misused my insulin in over a year, i recently went on the pump and gained weight and im having a really hard time with that. its a struggle everyday but i just remind myself that i want to have my eyesight and i want to have kids and get married, and now those things are more important to be than being skinny. one day at a time 
Hi. I am 23 years old and have been diabetic for 18 years. I starting restricting my insulin when I was in high school due to dealing with the death of my grandparents. I soon realized that I was losing weight at a record pace! I was always a little chunky but now I was getting compliments all the time, which fueled this eating disorder. I would drink a full nalgene bottle before my first class and I would have to excuse myself during each class period in order to throw up. I was dizzy all the time and I could easily sleep 18 hours a day. I was a competitive irish dancer at the time and I did very well in competition, but I have no idea how. I felt so terrible all the time! When I was around my parents I had to start “being good” again, so all my weight came back, which upset my mother since she didn’t know how I lost the weight in the first place. I have suffered off and on from this disorder ever since especially this past fall. My A1C was at 11.2! I wanted to badly to be skinny, so I stopped all insulin, and I never checked my bg, and once again all the weight came off. I was smaller than I have ever been my entire life, and everyone around me was so proud and happy. I was even happy when I looked in the mirror but I felt awful, and my eyesight was blurred all the time. I decided to get ahold of my life as my new year’s resolution. I got put on insulin pump therapy. Now, I feel much better but all my weight has come back, and i hate looking in the mirror. I have a personal trainer and I eat really healthy but the weight just keeps creeping up! HELP! I am so trying to be healthy but the weight gain is hard to handle. Some days I just want to give up and go back to being the way that I was. None of my clothes fit and everyday I feel defeated. I am grounded as to being healthy but I cry a lot and wonder why has this happened to me?!
I was diagnosed as a Type 2 in 2007 and I’m 60 years old. In the late '70s I was anorexic/bulimic. No treatment existed
at that time & even my dr did not recognize my disease, nor did I know there was a name for my behavior. Fortunately I was in remission for many years. A few years ago I was in group therapy with a therapist and a nutritionist. By this time I was a plus size & the therapy & support enabled me to eat balanced meals & to love the body I have. The last few years have been very stressful (lost job, best friend died, husband had cancer) and I have been overeating and fighting the urge to purge. I made a promise to myself in the 80’s I would never purge again. In the last 2 years I have come SO close to purging again, it frightens me.
Hi. I’m 21 years old and have been diabetic for 14 years. I started manipulating my insulin dosages for weight loss at 13 years old and have never been able to successfully stop. I have been in DKA over 20 times and one time got to the point where I had to be intubated because I had stopped breathing. The hell that this has caused me over the years hasn’t seemed to outweigh the price of skinny. The one time I was able to stop killing myself was when I was pregnant but shortly after my son was born I went right back to the same old routine.
I recently started treatment with the first person to write a book about diabulimia and I am so happy to be receiving help. I am documenting my experiences at http://mysugarcage.blogspot.com/
Hey there, I’m 21 and I’ve been diabetic for 18 years. When I was 15, the head nurse at my school told me about diabulimia because I wouldn’t eat if I wasn’t hungry and because I was on lantus I didn’t need a shot. I had no idea about skipping shots to lose weight until she gave information about it. From then I would stop taking humalog but still took lantus and I was so proud of the results and the loss of my “baby bellly”. To this day, I’ve struggled to deal with it because I see myself as weighing a lot more than I do.
Your stories break my heart and mirror my own painful journey. I’ve been diagnosed with fibromyalgia. I have not been testing myself for a few months. I had to remind my dr I needed an A1C, as it had been 6 months since my last one. I am have to be very agrressive. I’m having a bad fibro brain fog day. I’ll have to write when my head clears. Fibro really, really sucks!
Good evening. I am 38 years old, have been diabetic since I was 20 and have been battling diabulimia since my diagnosis (before diagnosis I was bulimic-used diuretics, laxatives, and fasting). I am an only child and have always felt a lot of pressure to be perfect…always a “people pleaser.” I have tried counseling, psychiatrists, anti-depressants…I am at my wits end. I have a beautiful 5-year-old daughter that needs a healthy and happy mommy. When my sugars are high and feel awful and I have horrific mood swings…it’s not fair to her or anyone else that I love and I feel such intense self-hatred and guilt for not having the strength or stop this by myself. I just want to feel better and stop the vicious cycle. I am very glad I have found this group. It gives me hope to know I am not alone. Sorry for the ramble…and thanks for listening!
Hi Everyone,
I can just say ditto, ditto, ditto to the posts here. For background, please read my story on my page.
I have been messing around, pushing the limits, for almost all of the 20 years I have been diagnosed. I was misdiagnosed, at 37, as a type 2. After being in ICU for DKA, got re-diagnosed as a type 1 and was put on insulin. Oh joy.
I have had a horrific time with ignorant doctors, and trying to manage my weight and glucose.
Do you know “diabulimia” is not a recognized disease or condition?
The most recent DKA episode left me with a gift of a new Endo who is awesome. He knows about diabulimia. However, they psychologist he referred me to for evaluation switched his practice to treating the morbidly obese. I thought he was wonderful, but he couldn’t commit to me. There is no one I have found who specializes in this.
I feel so alone, and no one understands. Only very few in my life know I struggle with this. Although most likely more people than I know have probably figured out I have some sort of problem when they see me eat a high calorie meal and choose desserts. I feel guilty, and like a criminal.
I cycle in and out of control. Seems moderation is something way far out of my reach. I am either in strict, obsessive control, or completely out of control. Right now, I am in control,
I know this behavior is destructive but when I am in it, I don’t care if I die.
Yes, I want to get well. But I don’t know how.
Hello All, My name is Alison. I’ll be turning 39 on Sunday November 6, 2011. I’ve been married for 17 years and don’t have any children. I was diagnosed with type 1 diabetes in August of 1992. I did’nt live at home and was attending college and had a boyfriend at the time who had transferred to a different university and we were trying to see each other 1 weekend a month and he came to see me and commented on how much weight I’d lost and how good I looked and so it began. I quickly noticed how fast the weight came back on after getting my blood sugars regulated and taking my insulin and the weight seemed to creep on faster with the more insulin I took. I met my husband in January of 1993 and was very happy but, with happiness came weight gain and we liked to dine out alot and I love to eat and I noticed a year later when we got the wedding photos back that I just looked enormous! and I was very happy and working alot and really did’nt realize just how much I’d gained until I went to the dr. and weighed in at 208. Horrified! I went home and skipped all of my insulin for 24 hours and became very nauseous and within days was admitted to the E.R. with a DKA but, when your in the hospital with this, they barely feed you but pump you full of fluids and of course an insulin drip and when I got home, out of curiosity, stepped on the scale and had lost 12 lbs. well, needless to say, I was excited. I quickly learned that to curb nausea and to avoid death, I would have to take some insulin so I took 2 units of R a day and 10 units of l. I did this for 6 months and lost 60 lbs. I also tended to be constipated so I would stock my cabinets with laxatives and for bloated days , water pills. I went up and down the weight scales for several years and was finally told after numerous admissions to the hospital and some investigative questioning in 1996 that I had an eating disorder by my doctor and I thought she was crazy. No, I don’t, I thought, and I can stop anytime I want! This cycle continued over several years and even caused problems with David and I (my husband) he watched this unfold and grew concerned. He was angry that I was’nt taking care of my health and wanted me to live a long life with him. This is one of the few things we ever fought over but, to avoid arguments, there was always excuses and lies to cover up the issue but, sadly after numerous mounting medical bills, we were filing bankruptcy in 1996. In 1999 we moved to Indianapolis and started a business and things seemed to be going well even though I was still manipulating insulin to lose weight and I started seeing a new doctor who examined me and quickly ordered an A1C and he quickly figured me out and in 2005 sat me down and after I denied everything he said "If you don’t stop this, you won’t see age 35.“My heart sank and for some reason, that’s all I needed to hear is " You’re going to effing DIE!!!” I’m so much more careful these days but, please, if someone needs the truth, don’t sugar coat it because we’re all guilty of thinking we’re immortal when we’re young and we’re clearly not. Also, keep me in your prayers. I want desperately to get pregnant and have been trying for over a year and fear my past issues with Diabulimia may be to blame. There is much more to this story and if you’d like to contact me, I’d love to share and encourage and listen and remember beauty comes in all shapes and sizes. Like snowflakes, we’re completely different but beautiful all the same! God Bless!
Diabetic - Type 1 - 24 years - ENOS (Eating disorder not otherwise specified, ie. purging without binging) and more recently in the past two years I've discovered diabulimia. I'm in treatment but its a struggle.
My most difficult challenge: realizing that dying of complications or living without a leg is WORSE than gaining a little weight. Currently my thinking is distorted.
I've come a long way with a combination of things (intensive cog beh therapy, cymbalta, starting a low-carb diet, a dietician, a pump guru, a psychologist, and my endo).
I've learned in my 26 years, 24 with diabetes that it doesn't get easier, you just find a new kind of normal (at least for me).
Hello all, it seems as though no one has written on this in quite a while, but I am having a particularly hard time the last few days and wanted to share my story. I am 27 years old and was diagnosed with MODY at the age of 14. I come from a MODY (mature onset diabetes in the youth) family but all of my endo's have only ever treated me as a TI on insulin since diagnosis due to my age. I have polycystic ovarian syndrom on top of all of this so I'm an endocrin nightmare. I was always very athletic and stayed active so weight in high school was never much of an issue (but I was on injections then). My senior year, I started to really gain a lot of weight when they raised my dosage. I figured out my freshman year in college that if I deprived myself of my insulin, that I was losing massive amounts of weight - and Fast. I was deathly afraid of gaining the freshman 15 and it was so great being able to live the life of a college student, while watching the weight come off. August of 2002 was when my diabulimia officially started.
From 2002-2009 I was a full blown diabulimic (essentially taking no insulin what-so-ever, behind my family, boyfriend, friends backs.) No one knew that my sugars were God knows what because I wasn't checking them and I seemed healthy. I honestly feel as though my sugars ran so high for so long that the side effects really didn't bother me. I lived with the yeast infections, thirst, and tiredness but it became part of my life. To me, dealing with all of that was well worth staying relatively thin.
Then in April of 2009, my nightmare began. I developed what is known as DTR or diabetic thorasic radiculopathy. Essentially, my nerves were so damaged that they would begin to stroke, and when they did, it felt like knives going into my sides. Because it was so rare, I went 6 months in and out of 4 hospitals (2 of which were teaching hospitals) without a diagnosis. I was essentially in a dilaudid induced coma about 20hours per day to deal with the pain. I was taking about 4-6mg of clonapin per day as well. Essentially, when I was walking, I was a total zombie and literally don't remember much of the better part of 8 months of my life. During this time, I lost about 60 lbs and when I was released from pain med detox in John Hopkins, I looked like I had just been in a Nazi camp. Here in lies my current issues...
I became so accustomed to being so thin for so long that when I regained my health, and started back on insulin, I gained all of my weight back and more. Since this time, I now work in the diabetes industry and have any and all therapies at my fingertips. My sugars are great, but I struggle on a DAILY basis with needing to take all the insulin. I have a wonderful boyfriend and he just wants me happy, but he doesn't understand how difficult it is dealing with putting all this insulin into my body. (Because I'm MODY, my body already makes a normal amount of insulin, but my cells can't absorb it, so not only do I have that insulin, but all the insulin I get in my pump as well.) He can't seem to understand how I'm working out like I am, and on a 1200 calorie a day diet, that I'm still gaining weight. It's really hard. Part of me wants to go one week on, one week off, and pray that the DTR stays away.
Does anyone know of any phenomenal specialists in diabulimia in the country? I'm willing to fly anywhere for an appt twice a year.
Is anyone else out there a MODY diabetic and how do you treat?!
All the best!
hey. ive been a type 1 for 8 years and am a college student. im pretty slim, and am totally not a foodist. the constant 24/7 worrying and monitoring of my blood sugar and carb intake has completely eliminated my desire for food. i dont like eating, and perhaps even hate it. ive reached the state where i only eat to keep my blood sugar level appropriate. its like food is simply a medication. i dont get hungry like others do.
im also very independent. i dont need help from others which of course is good. but i also feel weak when someone attempts to help me, or distinguishes between me and others just because of my diabetes. so i just returned from a 5-day holiday with 3 friends (ive done multiple school trips and trips with friends and i never required any assistance. sometimes even no one knew i was diabetic). so on the first day, i cooked for them then slept unexpectedly as we were all extremely tired. suddenly i got seizures as i was horribly low, probably because i was supposed to eat more carbs. my friends knew i was diabetic but didnt know what to do so they drove me to the hospital (first time i ever got treated over a hypo at a hospital). since then during the whole trip they treated me differently as they were worried, which irritated me, and sometimes joked over the seizures, which irritated me even more.
all this triggered some kinda hypo-phobia in me. i over-ate carbs so i can be fully sure that i wont get a hypo, and re-prove to them that im a lesser human etc.
usually i am great with diab care. my A1c last time was 6, and i could spend a whole day measuring my blood glucose only twice with perfect results. after that incident i measured over 5-6 times a day. it basically destroyed my self confidence, and now i eat even less.
its as though eating is a form of leisure, whereas fixing ur blood sugar is the actual priority for me.
im recovering from diabulimia but i never told my mum or dad about it. i kept it a secret and nobody ever knew so i felt this is the right place to let it all out. i needed somewhere where i could talk to people who have had the same "struggles" . my diabulimia comes and goes depending on how things in my life are. im currently considered overweight but im trying not to turn to my old ways. although im only 13 i have had diabetes since i was a baby i hope i dont go back to my old ways. i feel its more a mental struggle than a physical.
My name is Emilee and I am 20 years old. I have had type 1 diabetes for 19 years. 9 years ago, I developed anorexia. My sugars were constantly low, regardless of the fact that I kept cutting back on my insulin. I wanted nothing more than to just skip my insulin entirely and not have to eat at all, but my parents wouldn't allow this. Long story short, after 4 years of anorexia I semi-recovered with weekly appointments to my endo. I only say semi because although I became weight-restored and didn't obsessively count calories anymore, my views on food/weight were still very disordered. For a year I was "okay" before I developed bulimia. That quickly spiraled into daily binging and purging. My blood sugar levels became more and more out of control, but I just didn't care; I'd had enough of dealing with my diabetes and besides, it was absolutely GLORIOUS to binge after spending so many years restricting (not just with my anorexia, but with growing up as a diabetic!). I found out 2 years later that if I just didn't give any insulin, I could lose weight eating essentially whatever I wanted; in fact, the more carbs the better! I felt sooo lucky, and relieved that I didn't have to purge anymore. It was sooo much easier. But after 2 years of constantly high blood sugars, my life was hell. I missed out on my first year of university - the only memories I have are of being in the washroom all the time to pee. I called in desperation for treatment. I had to wait 3 months for my first appointment, so I decided to tell the juvenile diabetes clinic I attended at the time about my insulin omission. All that they provided me were looks of deep concern and confusion. They listed off all the dangers, but I already knew them. I left feeling only guilt and shame. At the ED treatment center I also felt helpless. No one on the team really knew how to deal with the diabetes aspect of my ED, and although the groups were great, I always felt alone because no one could relate to me. There were also aspects of the program that just couldn't work for me because as a diabetic I always have to count my carbs. At one point my health got so critical that it was suggested I go to inpatient treatment. After extensive research, though, I found that there were no ED inpatient centers that would accept me as a diabetic - it was a specific criteria for denial of admission. I felt as though I was a lost cause; that my situation was just too complex and no would/could deal with me. I didn't know where to turn, there were hardly any resources available. I wanted to give up. I was terrified, not only of weight gain, but of having to go back to constantly checking my blood sugar and giving insulin, as well as stressing about going low. It has been 2 years since I started treatment and I am only now starting to get back in control. I no longer omit my long-acting insulin, purposefully drive my level up, or binge/omit (I only omit now if I binge/purge - yes I resorted back to purging - and my sugar spikes after).
If anyone actually reads all this, well thank you! I am here for ANYONE who needs. I understand what it feels like to have this horrible disorder. My heart goes out to you all :)xoxoxoxo
T1 23 years old diabetic for 20. I started omitting insulin when I was 14, i woke up one morning and knew that high bgs = weight loss. That was all it took I stopped taking short acting and just took my long. I would go a month at a time without doing a bg, and was in hospital with DK multiple times a year. I always said I had the flu and had not been watching my bgs and wouldn’t take insulin since I didn’t want to go low while I couldn’t keep food down. It worked for years. I still suffer from diabulimia off and on. The past two months I’ve been very careful about bgs taking my insulin I’m on a pump, and when I’m on recovery I can get a1cs of 6.4. But now i weigh the most I’ve ever weighed, I eat 1200 cals a day,low carb, no refined sugars, and although my weight is stable now, it also won’t go down and now i find myself restricting calories down to 700 a day just to see if I can lose a pound or 2. I have never really talked about my Ed but I think if I can connect with others I will be able to avoid going back to bad bgs and I really don’t want to become friends with ana, I feel depressed tired and I can’t look in the mirror or have my picture taken without seeing that fat girl. It’s really hard and since no one knows I can’t talk to anyone either. My husband thinks I’m beautiful, and he says he likes my big butt, which is a trigger for me. I don’t want to go back I already lost vision in one eye but I hate my body and none of the healthy choices work since I think 10 years of diabulimia has ruined my metabolism. That turned into a bit of a rant but I just am so glad I have a name for it now. Has anyone ever returned to their pre-recovery weight the healthy way? I’ve gained 20lbs the past two years. I just need to know if I need to get over it or its something my body will just get over and settle back down.
While i don't have any magical words that can take it all away, I just want you to know that I really feel for you & that I am rooting for you. The eating disorder is so insidious, it won't stop until it's killed us. That guilt you feel is just another one of its destructive tactics. You are stronger & more beautiful than you'll ever know. You're in my thoughts & prayers!
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Hi DeeJay. You may be interested in reading the stories posted in the We Are Survivors section of www.wearediabetes.org. Also the recovery stories of my staff and myself are on the "contact" section of the website :)
Hi emily…looks like we’re around the same age and share the same issues…would be great to talk to you if you’re interested:)