This may seem like a silly or strange question to most of you. I’m on several diabetic forums. I’ve read a lot about diabetic burnout. After I said diabetic burnout makes no sense to me, I was told to do a Goggle search That didn’t help me one bit. So I decided to try this.
Since I have NO idea what diabetic burnout is, what it feels like, why you get it, how you get it. Could any one of you who has had it, please tell me how it happened. What brought it on, or why you think it occurred. How long it lasted. How long you’ve been a diabetic. What you did to get over this burnout.
I’ve been a diabetic since 1965. I don’t ever recall hating diabetes, thinking it was a horrible disease, wanting to curl up in a ball and cry because of it. I just don’t understand what diabetic burnout is and I want to understand or at least feel I have a better understanding of it. Thanks in advance.
I also never thought of myself as experiencing diabetic burnout in my almost 33 years with D. I don’t know what the formal definition is but I think when someone pays minimal attention or even ignores their medication, eating, and exercising healthy habits then I think that’s a red flag.
I went through about a rough five year period, when looking back, I probably experienced D-burnout symptoms. Perhaps it could be considered a milder episode of burnout. My blood glucose control was poor but I never ignored my need for insulin. I did feel depression when my blood sugar was highly variable with little time spent in range. I was pre-empting serious lows every day, treating lows that started with a screaming dive into hypo-land. I spent countless hours trying to correct stubborn hyperglycemia. It felt like I was correcting with saline instead of insulin.
I was still capable of working, paying my bills, and maintaining a minimal social life. I think diabetes burnout, like a lot of things, exists on a spectrum and mine did not become as serious as some people report. My life is much better now with the best blood glucose control in 33 years.
My impression–and it’s no more than that–is that it tends to occur earlier rather than later in your time with this disease. There’s the initial period of a year or so when you’re just getting your head around the fact that you’ve been saddled with this thing, then there’s a variable time after that when you settle in to managing it, but then it just kind of wears you down. For me it was about five or six years in. I was DX’d in '83, and the treatment back then was a combination shot of R & NPH insulin first thing in the a.m., sometimes a second shot of R later on. So you could just fall into a rut of shooting up in the morning and not thinking about it for the rest of the day, with the exception of getting whacked with a hypo. Around the time I’m talking about I had started a PhD program at a very competitive university and D was one more complication than I wanted to think about. It was a very stressful time. I kept taking my shot but I would go for days without testing. I don’t know if it counts as burnout by some people’s standards but I was definitely unmotivated to even think about it and was putting in the absolute minimum effort I could get away with. We had this “exchange diet” regime back then that I don’t think anyone was able to make any good use of, and I avoided obvious sweets but had basically no idea that other things like pasta, potatoes, bread, rice and the like were just as problematic. I didn’t have an endo, which probably didn’t help, but I do remember getting yelled at about my A1Cs by my GP.
Somewhere along in there I got a dog, dog walking led to running, and I started taking better care of myself. One thing about the advent of Lantus-Novolog MDI and carb counting, I/C ratio and all that was that you really had pay a lot more attention to what you were doing. When I (finally!) was able to switch to that treatment was when I really started managing it in a more sustained and serious way. Part of it was that MDI gave me a LOT more freedom to adjust my treatment to my eating and my life, rather than the straightjacket that was R/NPH. That made a hugely positive difference in my outlook as well.
I think you’re probably right about the timing of burnout for people diagnosed as adults. I think that for people diagnosed as kids, burnout is often in the young adult years. At ,st that was my experience. I have a (completely unfounded) theory that the grieving phases for kids are delayed until they start taking over diabetes management themselves as older teens or young adults.
I first began taking over my diabetes management when I was in my late teens. I was using the relatively new Humalog and NPH at the, so the control I could achieve was minimal. Combined with starting college and my first job, and my A1c rose to the 8s, where it stayed for the next five years or so. Then I got interested in getting tighter control, but no matter how hard I tried, I couldn’t get my A1c lower than the 8s. I had something of a mini emotional breakdown with diabetes, and looking up support groups is what led me to the DOC. In a way, the DOC prevented me from going into full burnout mode, because I found out about Lantus, carbohydrate counting, and that I wasn’t alone. So I worked for the next five years on trying to get my A1c to below 6.5, going from NPH to Lantus to the pump during the process, going on a week-long CGM run, lowering my carbohydrate intake…and still not succeeding.
That “not succeeding” after five years of concerted effort is what led to my first real bout of diabetes burnout. I felt extremely frustrated with diabetes and was also in a stressful job at the time, so there were other factors at play. But, for six months I just stopped caring about diabetes. I’d go all morning without bolusing for food and only bulus once my blood sugar got dangerously high (I always kept my pump on and corrected once I got towards the upper end of what the meter would read it if I went beyond into HI territory, because I was scared of DKA). I continued to work full-time, volunteer, and socialize during this time. During that six months my A1c shot from 6.7 to 8.5. Luckily, after a few months, I snapped out of it because I knew I was only hurting myself, though it took me another few months to really start putting full effort back into diabetes, and it took me an entire year to wrestle my A1c back down.
I like to think now that I’m more mature and in my mid 30s these things won’t happen again. But then I think of how I’m (hopefully) going to have diabetes for another 50+ years, and I’m sure I’ll hit another rough patch or two… Diabetes is such a mentally-intensive disease that if there’s any compromise in mental health, even very minor, it’s easy to let diabetes go off track.
Yes, I totally agree that it’s worlds different for young people than adults as you eloquently point out. Interesting point of similarity for me was being on the old NPH regimen, which was such a clumsy tool to work with anyway that it was hard not to just do the minimum if that. I also hate hate hated being SO locked in to those daily insulin curves that were just going to do what they were going to do no matter what came at you. But the thing that is really poignant for me was that business of getting the tools and working hard at it, and STILL not seeing the results. Similar to what we deal with all the time at the micro level: the inexplicable high that just won’t come down, or that you can’t even figure out why it’s there to begin with. It can be so frustrating and infuriating. It’s like you were going through the macro version of that. Burnout as rage bolus writ large.
Depending on how much time and attention you care to spend exploring the topic, you might want to read the following book. It’s one of the standard references on the subject (perhaps the standard). Bill Polonsky is one of the consensus experts in this area and has been interviewed live here on TuDiabetes.
William H. Polonsky, Diabetes Burnout – What to Do When You Can’t Take It Anymore (Alexandria: American Diabetes Association, 1999)
i am almost five years in with T1 and i went thru some burnout about 3 years ago. diabetes care/grind was just weighing on me. i couldnt do it all perfectly after the very long honeymoon stopped. i think the ending of the honeymoon was the kicker for me. the honeymoon had lasted 18 months and then it was like having to learn different rules to play by. the burnout lasted at least 6 months. to get over it, i started logging. everything. i fell off the logging bandwagon a million times but it finally stuck long enough for me to get my a1c under 7. i dont really know if im completely over burnout. i am ashamed to say i dont know what my I:C ratio is anymore and i wing it a lot. like A LOT. and i never log.
i stopped testing so frequently, my a1c went up to 7.4, i wouldnt bolus for all of my food. it was kind of when i was really thinking insulin was going to make me fat, had to control everything i ate. it was all so tiring. so maybe it was like burnout and disordered-ish type eating.
i will still eat more carbs than i cover for and try to exercise it away if its not before i go to bed and its all a really convoluted way of doing things. oh god, maybe im still in burnout. or maybe im just really lazy. i wish i hadnt opened this thread now!! haha
I’ve been at this longer than you and I didn’t turn the corner towards better care until 28 years in. I just tried to pay diabetes enough attention to keep it at bay. Unfortunately, for me, it meant gaining weight, doubling my insulin intake, and losing control of my glucose level.
I may be a slow learner but I am happy that I’ve learned some important lessons about how to live with diabetes. One of them is that it’s more sustainable and feels better to be good at the game and win your fair share of the time than it is to be a victim.
I remember when you first started posting here during your honeymoon phase. Too bad that couldn’t last longer!
Diabetic burnout (at least for me) is the feeling that “I’m tired of this.” It goes just beyond the thought and begins to affect/effect your motivation and performance of self-care.
I’ve been a Type 1 a little over seven years, so I have not been doing this all of my life. I remember life without Type 1 quite well. I didn’t worry about when or how much I ate. My metabolism was (and still is) very fast (or efficient) and I have never been overweight by more than five or ten pounds. I could eat a whole pizza or a whole loaf of garlic bread. Or have six pieces of French Toast drowned in Mrs. Butterworth’s–as well as a huge glass of milk and orange juice.
I COULD still eat anything I want, but my control is easier when I stick to set amounts of carbs and foods that are more control-friendly.
It can be exhausting having to do so much work just to feel something close to normal. I have other medical conditions, but once I found a medicine or a device to help with its control, every thing I do to deal with it now is just maintenance or regular prevention. I don’t have to adjust my Humira or change the settings on my CPAP machine. Those two things just work.
I have to adjust everything about my Type 1 all the time-- often on the fly. I am extremely good at improvising as a trombonist, but Type 1 is like having my trombone morph into a different instrument without warning.
Burnout for me is the horrible feeling that I have a newborn baby that is never going to grow up and will continue to wake me up randomly for the rest of my life. Even if I had a significant other, they wouldn’t be able to do more than sometimes assist me–this is my baby to deal with.
And being good at dealing with T1D is not missing a beat and instantly adjusting to the new instrument. It’s kind of like jazz musicians changing the key of the song, mid-song, with perfect improvisation. Good metaphor!
I went through my first 17 years of diabetes without having any diabetes burnout as far as I remember it. I would say I only really experienced my first instance of it last year, after encountering the first small taste of what may be some type of diabetic related complications.
It wasn’t anything major, some strange pins and needles in my feet, chest pain and a few other bizzare symptons (which has now almost gone entirely), but it really had a big impact on me. I was never particularly poorly controlled but that really made me get my act together and really pay far more attention to what was going on. The following months I would say involved my first ever real instance of diabetic burnout. I had so many doctor’s appointments try to work out what the pins and needles and chest pain I had were, whilst really paying meticulous attention to my diabetes, to ever calorie I ate, to every step I took, I really just felt like I could never go back to living how I had been. I think for me the burnout was really the fact I’d spent so long just living my life with diabetes, I can’t even really remember what life was like before I was diagnosed being diagnosed at 7, I felt like diabetes was just second nature to me.
Perhaps similar to what Jen suggested, I’d finally really come into taking full control of my diabetes and realised what that meant. So like some people who may initally have the shock at diagnosis, mine came 17 years later.
This may sound petty, but I think to some extent I also felt like it had never really been appreciated by my friends and family what it takes to control diabetes. Because I’d never had any burnout, or complained at all really about it, they all just assumed it was a pretty simple matter. This had never been a problem for me, but when everything felt like it was getting a bit too much it seemed to compoun the experience. It was like no one had ever stopped to say to me, hey you’re doing a good job. That was almost the hardest part.
I think Diabetes is one of those things where it is easy to judge…even from Diabetic to Diabetic. If “I” can do it, anyone can…seems to be the thought. However, everyone’s diabetes truly is personal. Not everyone DOES react to insulin the same way etc. I had my appointment yesterday, and ended up talking with one of the social workers who I’ve known for 8 years, and consider a friend. She was part of a test study I had done, and really was the only reason I completed it. I did not have a good experience during the test study, but she salvaged the whole thing. She and I both discussed this exact thing.
I think burnout can be in the form of simply being lax in the care, being depressed about having Type 1 in general, feeling of guilt etc. I truly do believe that some people are given the short end of the stick when it comes to Diabetes. They try to do everything right, and they still have very uncontrollable blood sugars. Why are there people, like a few on this board who have provided their 50+ years of Diabetes…who go years with truly elevated A1C’s, and have no issues because of it? But then there are those who aren’t around anymore because of it.
I think Diabetes is an unknown variable, and that is what causes a lot of the burnout. It’s like doing an exam, and feeling like you studied your tail off, only to still end up with an F. We like to see hard work pay off…that’s how we were raised. If you do X,Y, and Z…good things will happen. Unfortunately, Diabetes doesn’t always play by that book…you can do X, Y, and Z…and it won’t matter.
I want to thank each and every one of you for taking the time to respond to my question. I really appreciate your time and effort. From reading everything you all have said, I can say that I have never once in my 51 years ever experienced burn out. I don’t know if this was because when I was 6 my parents had me hypnotized because I was refusing to go to school. The reason was they didn’t like that I was embarrassing them, trying to grab onto the car as my dad left the school.
I just know that I’ve never felt like my having diabetes was a horrible thing, even though my family told me it was. They told me, every day of my childhood that nobody would be my friend because of my disease. Nobody would want to marry me because of how expensive this disease was. I never looked at my being a diabetic as someone with a disease, no people with cancer were people with a disease.
If someone said they felt sorry for me, I got angry. Sure I went through the typical teen age stuff where I wasn’t very careful about watching what I ate. But I never stopped taking my insulin, stopped testing my urine, or later when I got my meter stopped using my meter. I knew I had to test my sugar.
Or it just may be that because of my horrific abusive child and teen years, God decided He was going to allow my diabetes to not be difficult on me. No burn out, no complications. Being given control of this disease at the age of 9 isn’t something a smart parent does, not total control. A wise and loving parent needs to watch their diabetic child, mine didn’t. It was all up to me.
I was also diagnosed in 1965, and have similar experience of not ever feeling burnout. I did have thoughts of ‘why me’ and ‘it’s not fair’, but nothing that I didn’t get over with quickly and just move on.
One thing that I think is so much different today is that one is OVERWHELMED on initial diagnosis, with multiple injections, multiple BG testing, pumps, CGMS, carb counting, etc. It all happens in a short time and much more time is spent ‘dealing’ with diabetes. There is more outward visibility to others in many cases - school nurses, beeping pumps and cgms, etc. Glad I missed out on all that !
In 1965, I started with just 1 injection/day, and occasional urine testing. We had ‘meal exchanges’ , and no calculations for insulin dosage before each meal. No vending machines or 7/11s around every corner, loaded with sugary temptations. Gas stations only sold gas.
When I did start BG testing (1983), and MDI (1985), then pump (1996), and CGMS (2007 MM, 2011 Dexcom), it was a gradual transition. Very few people outside of my family knew of my diabetes until I started using pump and cgms, and I was past the teen/young adult years.
(interesting facts, I have never used an insulin pen, Lantus or Levimer insulins. I started using pump with Regular insulin, and prior to that used Lente, NPH+Reg).
I do have some complications, that help keep me focused on doing the best I can. I have regrets that I didn’t know enough to strive for better control sooner, but thankful for all that I have learned from other diabetics both on-line and in person. In many ways, that probably also helped in avoiding burnout.
From my experience, at least, diabetes burnout had nothing to do with how I felt about diabetes externally. I wasn’t ashamed of it, have never hid it, and (even during burnout) never stopped testing or taking insulin (aside from slacking on bolusing). I guess for me it was related to the fact that I’m a perfectionist and am used to setting and meeting high standards, and got extremely frustrated when I coudn’t do that with diabetes (outcome was not proportional to the effort I put in) and was also dealing with other stress at the time. These days I tend to set lower standards and, when I feel myself getting frustrated or when I have other life stressors and can feel myself starting to get overwhelmed, I set wider targets on my Dexcom and let myself slack off slightly for a while.
I’ve only been diabetic for five years, so that may be part of the reason I’ve not yet felt diabetes burnout. Or perhaps it was because I didn’t become diabetic until age 70. By that age many of my friends and relatives had experienced heart attacks, strokes or cancer. Some hadn’t made it. By comparison, type 1 diabetes is something of a snap. With most other things I could have gotten, I’d be almost completely dependent upon the doctors to solve my problems. With diabetes, I can basically handle it myself as long as I get a doctor to write a prescription for what I need. Feeling “in control” is, I think, a big factor for me to avoid feeling diabetes burnout.
And there is one other thing. I’m good at math. Analyzing what’s happening and trying to improve it is something of a challenge. I’ve managed to consistently keep an A1c between 5.5 and 5.9 since going on insulin. That allows me to feel success, which, I think, helps prevent diabetes burnout. Of course there are times I wish I could just eat without having to consider how much I can have without sending my BG too high postprandially, but compared to many others my age, I feel life is pretty good.
Burnout…hmnnn…I didn’t know that existed until now.
Okay, so 34 yrs now T1D. Like many people have mentioned, I also did the minimum to simply keep D at bay. However, in 2014/15, believe it or not, I went to work for Godiva Chocolates. In retrospect, it was probably burnout because I simply remember being angry before getting the job and most certainly while I was there because I wanted it to work out so badly and the manager (Alex) didn’t let that happen. (She had a lot of mental health issues.) Additionally, there were so many other problems going on at the time, again looking back on the situation, I simply didn’t care what was going to happen. Throwing that in b/c wasn’t the D alone that put me in burnout.
Feb 2016 sent me to the ER. Aug 2016 put me on a Pump. Sep 2016 put me on a CGM. Last A1C: 7.6. First time in 34 yrs I’ve been in the single digits!