Friday, March 31, 2006

Brittle Diabetes- Take Two

Okay, so the reasoning for asking everyone's thoughts on the phrase brittle diabetes, has to do with someone I went to college with. She is my age, T1, and has been since she was 17 years old. She, however, unlike me, does not take care of herself. She is on the same insulin regimen as I was before I went on the pump (Lantus at night, and Novolog/Humalog for boluses during the day for every meal). She hardly ever takes any insulin, maybe one shot a day. She doesn't take care of herself at all. She never checks her blood sugar and she is constantly drinking regular soda and never bolusing for it. Since I met her she has lost like forty pounds, been in the hospital many times, and is ALWAYS sick. I have tried many times to convince her that she is killing herself. The damage she is doing is irreversible. I have so much as checked her blood sugar and measured her shots for her when she is too sick to do it herself. Then I graduated college and moved away and now I don't know who is taking care of her.

Now that I gave the background, on to the reason for starting the discussion on "brittle diabetes." So, I am hardly ever giving people reasons to even worry about me and my T1 diabetes. I never miss a shot, I check my bg 8-10 times a day, I am now on the pump, and I want to continue to be healthy, therefore, I do not suffer from many of the complications that my college friend is. When I try to explain to mutual friends that she is causing her self to be so sick they say, "Her diabetes is not like yours, she is a 'brittle diabetic'." I am like WTF, we have the same type, she is no worse off than I am, and how dare you say I am no where near as bad as a diabetic as she is. You want to know the difference, I CARE ABOUT MYSELF. I feel sorry for my friend and I have tried and tried to help her, but she is 23 and should be helping herself. I am not judging her by any means and I know every one can go through a denial period, but I don't know what else as a friend I could do and I am so tired of people telling me my diabetes isn't bad because I don't have the problems she does.

Give me a break! I am sorry to rant like this, but I know you guys are the ones who will understand.

34 comments:

Sarah said...

Definitely understand...I had a friend who was dx'd around 9. I wasn't until I was almost 17. At first she thought it was great that she had another "d" friend, but then I realized how little she was actually caring for herself, and I had to distance myself.

Your friend is obviously playing the martyr and loving it. Unfortunately, you can't make people care about themself.

Felix Kasza said...

I had always understood "brittle diabetes" to be a shorthand for "large BG swings in response to small stimuli". I am glad to have learned that it really means "too lazy to test and inject whyle playing the suffering martyr".

As for the judging thing, why not judge her?

Cheers,
Felix.

Caro said...

I understand this. My experience isn't exactly the same, but I get you.

When I was at university, I knew several other students with type 1, who generally didn't look after themselves - rarely tested, never injected in public and hence missed injections. The problem was that these people never had low blood sugars, but never got so high as to be really ill. I guess their bodies got used to the high levels.

I wore a pump, tested my blood sugar, like you, 8-10 times a day, in the middle of lectures, in the bar, in the middle of conversations. Sometimes I had to say to people, I need to go and eat *now*, or I really need some juice. Consequently I was accused of "making a big deal out of diabetes".

"Look at so-and-so" people would say. They don't do all this stuff.

My explanations about how I was doing this stuff to keep myself healthy both now and in the future, that the others weren't doing that, fell on deaf ears.

And I learned that I coudn't influence other people either. People with diabetes deserve maximum education and support, but if they've honestly had all that, they know the risks and have help to achieve good control, but choose to ignore their diabetes, or "do it their way", then that is, ultimately, up to them.

I guess you have to try not to let other people get you down. My personal philosophy is to know that I am in good control and have every chance of living a good healthy life. I remember that, and screw the people who don't understand. I keep on taking care of myself, because I know that the people who matter, the ones that understand, admire me for doing it.

Hmm.. sorry that turned out so long. I guess you really struck a chord!

George said...

I hear you so loud and clear. I was also diagnosed as a T1 at 17 but I have never missed a shot EVER and honestly I just finally, at 33, started really accepting my disease and taking resposibility.I didn't test all that much or as much as i should have but i was somewhere between your regimen and your friends.

No one can make someone responsible. What you have told her will hopefully hit her one day. I just hope she gets it early enough.

And by the way, Diabetes Sucks. I love your blog! :)

Kerri. said...

When I was diagnosed in 1986 (age six), my mother was told that I was a "brittle diabetic" in that I was extremely sensitive to insulin and my bloodsugars fluctuated widely in response to what doctors called "normal stimuli." However, my mother did not use the phrase as an excuse to not test my bloodsugars. Or send me to Clara Barton Camp. Or to keep fastidious records. Or to take me to the Joslin Clinic in pursuit of the best diabetes care available to me.

She didn't use it as an excuse. And neither did I.

Diabetes is not an excuse, regardless of how you classify it. It's a disease.

Does the issue lie more with her not taking care of herself and being "excused" based upon the adjective "brittle"? When it really boils down to it, you are right: It's the same disease. We are all fighting the same battle.

The victories won from taking care of yourself far outweigh any resentment towards a phrase.

Val said...

I would have to agree with Kerri. I could consider myself "brittle" in that I get wide swings for no apparent reason (150 points for a cup of decaf coffee, for god's sake?) But I still test 10 or more times a day and really work hard at control.

I did get pretty pissed off seeing a dr on the childrenwithdiabetes site saying that there is no such thing a brittle diabetes, that is just due to not using the insulin correctly. I have to say that even with a CGMS for 4 months I can't get a good a1c, and it is not due to me not doing what I'm supposed to but rather (according to my CDE) to the technology just not being good enough to handle my body's reactions.

Diabetes sucks (as you say in your title) but just because it's hard to maintain control doesn't mean someone should give up entirely.

KJ said...

You are being a very good friend trying to help her. The only problem is that she needs to want to help herself and as long as she doesn't accept it, there's really nothing you can do for her. You should not feel quilty nor should you feel responsible.

I was dx'd T1 when I was 8. And although I'm doing very good now, I did not always take care of myself. When I was 17-19, I didn't check myself too much, I was really mad and I didn't care. I even found out that I could lose weight by not injecting. But my health was going backwards FAST! It scared me so much that I jumped into the opposite. I'm checking myself 10-12 times a day and my A1C is 6.1 I guess I had to get that scare before I could change. I really hope your friend will take her illness more serious, the sooner the better. Good luck!

I love your blog and I will definitely put you in my blog as well.

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Miss L said...

Hi I am 22 just diagnosed as a type 1 diabetic. My dad has been diabetic since he was 14. I am very offended at the ppl who sayd brittle means lazy, maybe for some ppl not for me. I am BRITTLE DIABETIC.oN VERY LITTLE INSULIN MY SUGAR CAN DROP 10 POINTS IN A LITTLE OVER AN HOUR JUST LIKE THAT. I check my sugar sometimes 14 times a day, i watch what i eat i excercise but it's still not enough my sugars swing like crazy no matter what i do. I hope the pump helps. now before judging teh next brittle diabetic take into account what ive told u. its true somwe cases of tyope 1 diabeets ARE harder to control than otehrs. Mine is one of them. Thanks.

Anonymous said...

i am a 49 yr old woman, who is having her pancreas remove due to disease. my dr. said i will be a "brittle diabetic" with a shorten life span. i have been doing research and i think he is over dramatizing the effect the surgery is going to have on my life. i read about people with brittle diabetes for years longer then he quoted me. i use to scuba dive,sky dive,bungee jump etc. right up until 4 yrs ago when i first took ill. i never drank or did drugs. my pancreatic problems were caused by a mistake during a minor procedure. is there anyone else out there who is in the same boat as I as far as having their whole pancreas removed?

Anonymous said...

I am a self-diagnosed "brittle diabetic", diagnosed with type 1 diabetes at the age of 52 (2 yrs ago). Many, many things affect my GC level, certainly not just insulin or diet. I know now diabetes is the reason I lost 40 lbs in 3 mos almost 3 yrs ago (my Dr checked my thyroid and that was it - told me it was ok). Therefore, I have no idea how long I functioning with a high blood sugar or how much damage was done before I was even diagnosed). I ended up in the emegency room when I thought I was going blind after my blurred vision got worse and worse. My life REALLY sucks since all of this. I have been diagnosed with fibromyalgia (which many people don't believe in), nueropathy, carpal tunnel in both hands and tennis elbow. To all of you out there that have total control of your diabetes, I am very happy for you -- BUT don't judge others!!!! When you CAN'T control it - IT DOES CONTROL YOU!! I have worked hard my entire life and have taken better care of myself now then ever. I do not use my diabetes as an excuse, in fact I started a job recently and never even mentioned that I am diabetic. I was reprimanded for testing my GC in a training class. I HATE IT and wish I could control it. I just had to respond. Take Care to all.

Marnie said...

Just a thought about "Brittle diabetics" remember it is not always our fault. Sometimes they just can't figure us out, but they keep trying and most of us keep trying, although it gets a little scary sometimes. Thought I would also share an article about "Brittle Diabetics" with you. Note the result of the study in the last line. Thanks, Marnie The etiology of incapacitating, brittle diabetes
DS Schade, DA Drumm, WC Duckworth and RP Eaton
Incapacitated brittle diabetic subjects are a small subset of insulin-dependent diabetic individuals who are unable to maintain a normal lifestyle because of frequent disruptions secondary to severe hyperglycemic and/or hypoglycemic episodes. Thirty incapacitated patients were referred for evaluation because the cause of their diabetic instability could not be determined by their personal physicians despite extensive patient training in correct diabetes management, frequent hospitalizations for observation, and multiple diagnostic testing. From the 30 patients, a diagnostic algorithm was developed (described in the companion article) from which the etiology of brittle diabetes could be established in 29. This article provides the clinical characteristics of each of the 30 patients, a description of the etiologic categories of brittle diabetes, and the clinical follow-up from the time that the etiologic diagnosis was established and treatment recommended. Although extensive medical records were sent with each patient, without prospective objective testing under rigidly controlled conditions, the correct etiologic diagnosis would not have been evident from the clinical presentation of the patient. Of equal importance in identifying the etiology of brittle diabetes was the acceptance and cooperation of the referring physician in providing close follow-up and repeat insulin challenge testing when necessary. In this referred patient population, eight subjects had factitious disease, eight were malingering, seven had communication deficits, two had gastroparesis, two had systemic insulin resistance, two had miscellaneous causes of brittle diabetes, and one patient remained undiagnosed.(ABSTRACT TRUNCATED AT 250 WORDS)

Heather said...

I was just diagnosed with type 2 in October. Just yesterday was given the dx of "brittle" diabetes. I am offended personally because I am very proactive, take good care of myself and have been testing more than I was required to. The fluxuation in numbers and reaction to food and exercise and actually getting higher gl after meds, caused the doc to say it is probably brittle. Just because your friend was and is stupid, I am 39 have two teenage sons to finsih raising. I don't have time for this disease, why would I want it to be worse? Maybe you shouldn't stereotype people. I did not realize there was so much competition as to who has it worse with diabetes and who takes better care of themselves. Frankly I think those being critical and lumping all brittles into one category need to get a life and stop feeling sorry for yourselves. We all have the same disease. None of us react the same way to the same treatments, or care. So take you "too lazy to test and playing the martyr" and look in the mirror. So what is your label for those of us who are not martyrs, but rather take excellent care of ourselves and came on this site to look for the best, most updated info to keep taking care of ourselves to the best of our ability? I have a masters degree in psychology. What is going on here sounds like projection. It is when you point the finger at others when what you are really accussing is part of you and your own behavior whether conscious of it or not. Where is the empathy for others? If you have suffered then why are you so cruel to others with the disease. The body can grow out of some things, even some diseases and it can develop diseases and grow tumors. Unfortunately you can't grow empathy. What a shame as it is needed by a lot of self pitting diabetics competing for who is worse and labeling those with maybe a little more challenging portion of their disease as being lazy and martyrs. Learn to manage your empathy as well as your glucose.

melissa said...

My daughter,who is 12 years old, is my T1 diabetic. She is now experiencing her 4th DKA episode in 8 months. I am very worried and am searching for answers online. I found the term "brittle diabetic" and, thus, your blog. I am interested in what I have read elsewhere about an emotional connection,which sounds more than plausible for a 12 yr old girl. Also, due to comments she has made this year about her body image - I am concerned about anorexia. I don't know how a diabetic could be anorexic, but she has lost a lot of weight this year, become very private about her diabetes self-care (she is on the pump and self-checks and doses.) She has also had these recurring DKA episodes. Her A1C has also come down from near 9 to around 7. Is she a brittle diabetic or does she need more serious help? Someone please respond with your thoughts! (hatterasmom3@yahoo.com)

Anonymous said...

I have a 13 year old son recently diagosed with T1, actually 5 weeks ago. I am blown way at how mature he has become in these weeks. He is fastidious about checking his levels, keeping good records and eating on schedule and getting his required carbs.
Can anyone calm me down about the emotional side that he is clearly not addressing? He, I think, is fearful. All you successful T1 young adults that had a diagnosis at around his age, can you reflect and give me any insight? Advice?
I do not want to invade his personal space, thoughts, etc., but I also wish he would "let it out' a bit. Your site sums it up..when I ask him about his feelings, etc., he simply says, "Mom, diabetes sucks." fullstop.
Gina, mother of Bo, 13

anna said...

Nobody likes to be judged by people who don't know all details.
I understand the original rant, and if it would do the friend any good, I'd suggest to keep on ranting. However, not every brittle diabetic is a lazy diabetic. I have 2 children with db, both type 1. One is a fairly stable child, in mind and in sugarlevels. The other isnt, has some major emotional problems and shoots up and down all the time. It can differ so much that one day I shoot him up with half the dose he had a few days before.
For him it has to do with mainly how structured his life is and how active he is and much with how his emotional state of the moment is.
Yet, they both eat the same meals, play together ( they are 4 and 8)
They both check on regular bases and never miss a shot.
So before you judge, think. Because it might hurt you to see your friend doing this to herself, it hurts me as a mom to be judged a bad mom basically, because brittle equals lazy, in your opinion.

Nikki said...
This comment has been removed by the author.
Lyn said...

My sister just died from being a Brittle Diabetic. I was doing some research on it and ran across this blog. I understand the feelings of the OP. For years I have watched my sister doing things that caused me to pause and ask if she should be doing it and always getting the answer of compensating with more insulin or something of that nature. I have seen plenty diabetics in my lifetime that don't take care of the disease. The treat it like a medical condition and it is not - it is a disease.

Anonymous said...

I am a brittle diabetic and I have had diabetes for 28 years. Just 3 years ago they diagnosed me as being brittle. I was found passed out on my floor by my parents who had checked on me at 9:00 A.M. and my sugar was 95 that was good. At 1:40 I looked at my watch after working outside in my yard in the hot sun all morning and said why am I moving so slow? Then I realized I had not had lunch. Went in and heated lunch up in the microwave and passed out. They found me a 3:40 pm and they thought I was dead. Somehow they were able to get me to drink 4 glasses of juice and take two glucose tabs but, I still did not move. For the first time in 26 years they called an ambulance. When they arrived they gave me a glass of juice w/sugar. I started to come out of it they waited 15 min and tested my blood 42 was the reading. They told my parents that I was probably in the single digits and if they had not found me when they did I would have been in a coma. I stayed that night with them in their home and my nieces stayed with me in my old bedroom. Thank GOD they found me on the floor at 4:30 in the morning having another one. When I went to bed @5 hours before my sugar was 147 and I ate peanut butter and crackers. My sugar at that time was 31. Now, I went to the doctor specialist and explained this. They did not understand. Now, I was being monitored by them 4 days a week and bringing a logue of all I ate and what I took for insulin and checking 8-10 times a day. They did not understand how I would be so high and drop so low within 1 1/2- 2 hours. Then it happened I had a really bad car accident with all my monitoring and when I left work at 9:30pm I went really low to 42 when I had the accident. But at 8 pm my sugar was 265 and I ate a small piece of cheesecake. They totally did not comprehend how quickly it dropped. Still today my sugar could be 42 I eat something to bring it up have a glucose tablet and still someone buys me a large juice and still a half hour later my sugar may go up to 58. Then my boss or a friend from work will bring me home. Mind you it is a 40 min ride. So, do not say brittle diabetes is a lazy diabetic because you are SO WRONG. your friend is a bad Diabetic, yes but, did you ever think maybe it is because she is tired of her illness. I was so down about mine at the time and I wanted to give up, But, I gave it a good cry and then I was good. At that time I said God I never questioned why you gave me this illness or complained but, right now I cannot take it. Maybe she has not turned to anyone or even someone higher it always made me feel better just not cure it.


Tracy in MA

Anonymous said...

I have a father that has high blood pressure,diabetes and a bad heart (quad bypass). He is married to a lady that has refused to take care of herself and refused to take the fact she is a brittle diabetic. She is soo bad with the refusing to take this diese serious that just this past month, my father had his gall bladder removed due to slugg and gall stones. After the gall bladder was removed he came down with a bad case of Pancreastits doctors claim due to stone stuck in the duct. He was out of it for almost 1 week. During this week his wife only ate 2 lunches, along with bags and bags of potatoe chips. I have this relly bad feely that her brittle diabetes is caused because over the years she has refused to take this diese seriuos. I have now for the last 7 years come to believe this lady has Munchasen Sydrome because of the fact she let her blood sugar rise to 592 and refused to leave the hosptial room to take care of her self. I walked into the room of my father and he was not in the room and she was in his bed and didn't know where my father was. I have never in their marriage interfered but when all this hit I was fighting her about moving my father to another hospital while he was still dealing with the Pancreatits, my father was not even aware that he was in a hospital that is how delicate and fragile he was). But still she refused to let anyone else take care of my father. So I had her admitted into the hospital due to 592 reading. And the moment I walked into her room to chech on her she tried to get me to hand feed her but she could use her arms to toss and turn in the bed and jump from the bed to the commod to vomit. So I finally had a talk with my father after 1 day of him comming to. And he had told me he has thought there was something not right with her too. So he talked to her about tring to get a doctor to check her out, she blurreted out I'm not crazy and no I will not, I told her she will do this or she had to leave from my fathers house now. I could no longer allow her to care for my father if she refused to take care of herelf. I have decided to take over their meals and food to see if her diabetes can get under controll, because I honestly believe if she tried alittle bit harder and cared about herself she would not have turned into a brittle diabetic. I believe that she had controll of her blood sugar before she meet my father and now she has someone to pitty her, she has let her other diese take over. Their are toooooooo many signs of the Munchausen. Please can someone tell me if I have a chance at this intervention, or am I going to lose my father to this women who doesn't care about self enough to keep her sugar under controll but rather stay in the hospital all the time and not able to help my father when he needed her the most in his life? I really don't trust her to take care of my father any more I really don't even want her to come back to his house. Please help.

Anonymous said...

Having had diabetes for 26 years, I have found my condition to be "brittle". I too ate correctly and exercised vigrously ( a nationally ranked athlete for many years)until I was no longer able to physically engage in sports because of complications. I continue to eat properly, test regularly and never miss a shot. Still, no endocrinologist or internist was ever able to help me establish steady blood sugars. (I have a nagging thought that there is a third type of diabetes.)
And no, this doesn't excuse those who refuse to do what's recommended and simply cause their own problems. But it does say to those of us who smugly claim that every brittle diabetic is simply not as good of a person/patient that sometimes there are things bigger at play than you or I have knowledge of.

Anonymous said...

I've learned a lot from my mother's diabetes condition. She is in her late 70s and has had type 2 diabetes for about 15 years. As she gets older it is so very important that she eats a well balanced meal with a nice size serving of meat for dinner in addition to her exercise and medication. An hour or so after dinner each night and just before retiring to bed, she eats a couple of lance peanut butter nabs and takes about 2 to 3 swallows of butter pecan glucerna. She then sleeps like a baby and wakes up the following morning with blood sugar reading between 70 and 100. Normal urination. Without the glucerna at night, I'm always afraid that she will fall out of bed because of low blood sugar or get up to urinate several times during the night. My mom is healthy, outgoing and as long as she follows this plan, she is fine. Hope this helps someone who is having problems or knows of somone having trouble controlling type 2 diabetes especially at night.

Mommy2aSweety said...

Diabulimia, anyone..anyone?

Anonymous said...

Wow some of these comments.. I can't believe.. My sister is a T1 brittle diabetic and it's not because she fails to take insulin. She has to take several shots a day, which she does, and her sugars are still really high. She's been in hospitals more times than I can count just in the past year for this. Even the hospitals can't seem to get it under control. They were giving her 12-15 shots a day and constantly had her on IVs to hydrate her because it's so bad. It's not always about someone "not taking care of themselves", some people just have it a LOT worse than others. And they still won't put her on an insulin pump. She's had DKA several times and all they do in the hospital is hydrate her and send her home. She's been on so many different insulins it's ridiculous. I hate having to see her go through the dehydration, hyperventilating, and extreme weight loss because no doctor can seem to help her and give her the right stuff to take when she's actually taking care of herself. Her body is just too broken down and it's a shame. You people need to stop putting brittle diabetics in the category of "lazy" because not all of them are.. They just can't keep it under control no matter how much insulin they take or how many times they go to the hospital and get medicines that they take when they are supposed to.

Diabetes Supply said...

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me3110 said...

Some people do truly have "brittle diabetes", but I know there are some people who truly don't really care. I have been a T1 diabetic for 23 years, diagnosed at 7 yrs old, with diabetes and hypothyroid. As a child it was very hard for me to deal with as a child of 2 alcoholic parents I was left to take care of them, my sister and myself. I have always had problems controlling my diabetes and there was a point in time in my life where I stopped caring as a teenager. For the last 10 years I have been truly trying to take care of myself. I am seen by my PCP, endo and educator regularly and test 8-10 times a day and I am on a Novolog/Lantus schedule and never miss my insulin shots. I know many type 2 diabetics who always comment on how good I eat and take care of myself. Yet my sugars are constantly up and down and I have been known to "bottom out" in the middle of the night even after testing my sugar before bed and if it's low I will eat a carb/protien snack and still wake up with a b/s of below 40. Lucky for some of you who have a form of T1 that dosen't require so much effort, but I am here to state there is such a thing as "brittle diabetes" although, yes, the term can and does get misused.

Garnetrose said...

my daughter is a brittle diabetic and very much like your friend. It is quite a worry....

frontline plus said...

Hi,
I was diagnosed with grade 1 diabetes 1 year ago and has really been hard because I had to change many aspects of my life to lead a better life with this disease

Anonymous said...

hi

Anonymous said...

The title of your blog is bit depressing, but I want to weigh in on the "brittle" idea. It is probably the most frustrating thing to read all the people with
A1c's below 6 due to "good control", which implies any other reading just means you don't care enough to follow the rules. I have been a brittle diabetic for nearly 40 years. Yes, I do the best I can with the mess. I have avoided hospitalizations, passing out (even as low as 23) and complications. I did not choose to have wild fluctuations. My food, insulin and exercise do not correlate in any way and I have had many educators and doctors try to "fix" me. I would be so happy to have an A1c of 5.0 and be able to post how "good" I am. I am good. I test 4 to 6 times a day, take 3 or 4 shots, never leave home without food, testing supplies, etc. I am very active and do a lot of hiking and outdoor stuff. I carry glucose tablets all the time, plus sweetened pop or juice, etc. I test and eat on schedule. Trying to characterize "brittle" as "just doesn't care" is not true. It may make some feel better to believe that it is by choice--it's hard to realize you live with something you really have little control over. We do the best we can and if it makes you feel better to "blame" me so you are safe from ever ending up in this situation, then I guess blame me.

Anonymous said...

I am 29. I was diganosed with T1 at ae 21. I am a true brittle diabetic. I follow my diet, i take my insulin, I check my sugar 6-8 times a day. I don't eat or drink anything I'm not supposed to. I still land in the hospital every 6-8 weeks due to DKA. I was even on the pump for 2 years without much relief. What your friend was doing is basically making her death bed. My ex is the same way as your friend, but his excuse was that it's cheaper. Well, duh it's cheaper, all the unhealthy stuff always is. That is what broke us up. I can't be with someone that isn't going to try and take care of their diabetes.

mithun said...

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Anonymous said...

There is no use trying to explain BRITTLE diabetes to those who don't have it,and I would not wish it on anyone,,,,it sucks Just take one day at a time,do your best and when the numbers are still bad don't stress.God knows all and He is in control!!!!