How many of you feel like you have “accepted” diabetes? What IS acceptance?
How many feel like you are constantly rotating through the “stages of grief” with diabetes?
I went along with things just fine as a kid and was quite responsible. Then as a late teenager and young adult I went through sort of a denial where I tested and did my shots but that was about it. Then I went through a gung-ho phase where I did everything to perfection … and went insane because my numbers were never even close to “normal” despite my 110% effort. And then I went into a major burnout phase where I again did the bare minimum. Just coming around now to snapping out of that and getting gung-ho again, except this time without the perfection part. (But then how high is too high and how much is too much for complications to develop?)
I’ve heard some people write about how diabetes has had a positive impact on their lives. I really can’t think of a single positive thing diabetes has done for me. But then, I was diagnosed young enough that I have no idea how my life might be different without diabetes. Sometimes I feel like I need to say, “Yes! Diabetes is great and totally manageable with hard work! I don’t mind having it at all!” in order to accept it. But I don’t feel like it’s great nor that it’s totally manageable with work (somewhat manageable yes, totally no), and I hate having it.
I’m at almost 20 years with diabetes and the thought of keeping this up for another 50+ years is daunting. (I am also skeptical that they will come up with a cure for long-term T1s in that time. Though artificial pancreas they will and that will help.)
I was diagnosed as a kid, 30 years ago, so I think I was pushed into the deep end in many respects. A lot of things folks here have questions about things related to acceptance and I honestly dealt with that phase so long ago that it’s only a vague memory. Diabetes has been the “normal” for me so long that it’s the non-diabetic stage of my life that I regard as not normal.
I went through a phase about 15 years after diagnosis, where I was so preoccupied with me worrying about diabetes and bg’s and money to buy all the stuff and all the rules preventing me from buying and using the stuff, that some segments of the rest of my life kinda fell apart. It was very stressful.
I view that phase as either the last phase or just most recent phase of acceptance. After that and putting things back together, I feel a lot more confident about life, at least for now!
It took me a dreadfully long time to reach acceptance. Only in the last couple of years did I stop resenting the hell out of Diabetes. For a long time I wasn’t going to be inconvenienced by this disease. I did just what I needed to do for many years. There was a long period (15 years or so) that I hadn’t seen a doctor. I was depressed and having hypo unawareness. It took having terrifying insulin reactions for me to figure out that there’s a better way to do this. About that time, I stopped fighting against it. It had to be a lifestyle change that was realistic. The acceptance made it easier to make the necessary changes. My patient ed had been non-existent. My mom was a nurse so what I learned I learned from her. Her education hadn’t been updated since the 70s. I got “Using Insulin” by John Walsh. It opened my eyes to how badly I was doing this thing. I taught myself carb counting. I’m certainly one of the born-again diabetics.
Going for perfection is unrealistic and I had to understand that, too. One of the things I got out of the deal is that I was more patient with myself and forgiving. But as part of all of this I was having some successes as well. It was very motivating.
I figure I had to come to detente with Diabetes. A little care and feeding and control is attainable. I don’t hate it anymore, I think it helps that I don’t feel like I’m deprived of anything any longer. I’ve learned moderation and portion control. As a result I’ve been able to lose and maintain my weight. That’s one of the most positive things I can come up with off the top of my head. I wouldn’t venture to say “Yes! Diabetes is great.” But I realize that it is not all that bad. I stopped asking “why me” and started thinking “well, why not me?” It helped not to feel like a victim. I figure I can keep this up over the long-term. Education is important and very empowering. The more you know, the easier this stuff is.
Acceptance… don’t know if I accept Type 1 in our lives. Resignation would be the correct emotion. I can’t accept it; I certainly don’t accept it as a permanent presence. I am resigned to the fact that D is a temporary guest in our home. I can’t accept this future for a child… at least not care as it is constituted today. Need relief in the form of noninvasive glucose monitoring, smarter insulins, CPeptide supplementation. Islet transplantations, once they do not need immunosuppressant drugs, we will be all over that. And we are hoping to be in trials at Columbia for their new discovery, if they do not need to go the route of animal studies first. We are always searching for alternatives…
I’ve had a pretty circuitous path with my diagnosis, as you all know. When I was first misdiagnosed Type 2, I had been experiencing symptoms and pretty much guessed what they were and so I asked my doctor to do a blood test. I wasn’t surprised by the results; when they said my fasting was 325, I just said, “So that means I have diabetes?” (I had no clue about numbers). No biggie, I’d been expecting it and I figured I’d just take some more pills (I took pills for other stuff) for 20 years and worry about insulin later if I lived that long.
When my numbers started climbing I went into hyperdrive to figure out why and realized I was really Type 1/LADA. So that caused me to be pretty invested in the process. I’m only 28 months total now spent about 1/2 and 1/2 in each “phase” of my diabetes experience. The first phase involved a degree of denial in that I just took my meds, measured my blood sugar twice a day and didn’t change anything else. The second phase involved me accepting I had to alter my carb heavy diet.
Right now I’d say I’m still in the “gung ho” stage, and a bit obsessive. For me, the process of acceptance comes when I let go of the belief I can completely control all the variables and attain perfection. I don’t know what that will look like on the outside. Maybe not a lot will change, maybe some things will. But on the inside it will feel a lot more relaxed…a lot more accepting. To those of you not familiar with the Serenity Prayer, it goes like this:
Grant me the serenity to accept the things I cannot change
The courage to change the things I can
And the wisdom to know the difference
It will feel like that.
“I really can’t think of a single positive thing diabetes has done for me”
me either. and i dont know if its acceptance or just the way it is. after 38 yrs i really dont remember life before d.its pretty vague. i do know that the 24/7/365 gets old though! lol i have been through those periods also but what i would really like is to be able not to do anything d related for a week!! i promise i will be good after that. really. lol
I would say the word resignation is probably most suitable regarding my attitude toward having D. I think that the only reasons I can handle it as well as I do now is because: a) I went throught the denial phase with my first pregnancy, during which I had gestational diabetes, and then went through another pregnancy a few years later with gestational diabetes, b) because I am having very good luck managing it since I was diagnosed, and c) I got it at 42 after living a totally normal life, and also having gone through difficult times in other ways – i.e., this was kind of like one more thing to the pile, and I didn’t have the energy to fight it.
If/when I start to have a harder time managing it, I may start to feel differently. But in the meanwhile, I am trying to appreciate life as I live it, and give thanks for the things I have and experience. Even though D can be managed, in a sense it has really driven home my mortality, the fragility of life, and also the miraculousness of it, so I’ve somehow developed a special sense of humility that I couldn’t have quite “lived in” before diagnosis.
Hi Jennifer J.,
I’m a bit different because I didn’t develop the T1 until I was 27. So I’d had a long life of “normalcy” prior to my now long life of “insulin-addicted normalcy.” I grieved for about 3 days. I was diagnosed on a Friday at the local clinic by a general practitioner. She told me to get on a 2000-calorie diet. I did one day of that and was depressed as hell. I was starving! I’m 6’1" and require something more along the lines of 2600-3000 calories/day, depending on activity. So, starving, I thought “This is how the rest of my life is going to be?” That was my first D-weekend.
Then on Monday, I met with my diabetes educator/nutritionist. She laughed when I said I was on a 2000-cal diet. She said “You’ll starve! Let’s feed you!” So from that point on, I realized things would be ok. Maybe not normal, but D-normal.
Cheers all, Mike
I think I’ve done just about everything ur talking about there. I wanted to be “normal” and eat when & where I wanted to. I see u also got diabetes as a child so u must know that feeling of wanting to be like ur friends on a Saturday night. Done MANY dumb things then. Now I’ve neen a diabetic for 37 out of my 47 years. I don’t think I would know what to do if the dr said “ur cured”
Diabetes has always been a part of my life and I guess u could say I’ve just gotten used to it. Now I worry about being sure I have all the required things for a diabetic.
I am only nine months in so far things are going OK for me but who knows down the line. The month of DX was complete hell in the psychological realm of accepting that this was happening to me. I think I was more mad and scared than anything else because I didn’t understand it. I am one of those types of person I have to come to some sort of conclusion about unanswered questions that I can’t answer go I can sort of “put it on the shelf” and not think about it anymore and just go on. (sort of like deciding whether or not God exists - you decide what you believe or don’t believe and file it away, otherwise it will drive you crazy - same thing with the question 'Why did this happened to me?" with D).
That said, I think for the most part I have accepted it (what other choice do I have right? It always gonna be here whether I want to except it or not - which most of us don’t - but if we don’t we will just torture ourselves). I could totally see that being dx’d as a kid it would be hard to see anything positive about it. I think if you are dx when you are older you might see be able to see more positives that it could bring to your life. I really think it had made me stronger. And stronger people are survivors.
I think it is perfectly normally, psychologically speaking, to go through cycles with dealing with this and I don’t think anyone should be ashamed about that. Not only do we have to deal with the stress of ‘regular’ life but we have this to deal with 24/7/365 days unlike most people in the world. There is no vacation. In ‘regular’ life, you can take a vacation from work stress etc. You can escape for even just a day. It is OK to want to be exhausted and not think about it for a while - even if just for a few seconds.
I think one of the tricks may be to realize that, for us, this IS “regular” life. This is the new “normal” for us.
That said, I don’t think anyone anywhere will ever say “Diabetes is great”. Why would they? Of course it isn’t great and we shouldn’t be pressured into being that way. Of course, we mind having it. Why wouldn’t we? Who in the world would want to deal with this by choice. right? No one. It is an inconvenience - that is for sure. But it is here and it isn’t going anywhere and I think by realizing that and just doing the best that we can is the closest we will get to “acceptance.”
I should add too that I have never considered myself “normal” - there were already a zillion things that were different about me even before D so hey, what is one more thing right? (although yeah, I did think “Geez, just great, another thing to make me stick out like a sore thumb.”) So I am kind of used to not “fitting in” with everyone all the time - so I guess I had already that issue tackled in my head. Whether other peopel see me as a “weirdo” even if they don’t know about the D - well, I often joke about that and they laugh - so I have a feeling they don’t see me as “abnormal” as I do. 
LOL! Great story!
Yeah, I can’t count how many times a doctor has told me the wrong thing and had me freaking out at first only to find out later, they were wrong which why I never take drs words as law.
Oh, you’ve hit my diabetes experience right on the head. What is acceptance? All I know is that when I talk about it…I always start to cry. I hate talking about it. I mean, I don’t mind answering peoples questions about it, I actually like that. But, when asked how I feel about it…I just break down. Every time. Does that mean I haven’t accepted it? I don’t know. I’ve had it for 12 years now…you’d think the tears would end.
My 27 year anniversary will be in January. I was 24 when I was diagnosed. I have accepted it because I can’t do anything to change it. I cried when I found out and thought I had been handed a death sentence but once I got over the initial shock, I started to find ways to deal with the hand that I was dealt.
Like others, I have gone thru periods where I did not seem to care any more, but those periods were caused by other stresses going on in my life, not from the diabetes – break-ups, work, and deaths.
Two positives for me are 1) the incentive to eat healthier and 2) exercise. I grew up in a household that we ate fairly healthy so maybe that would have stuck with me regardless of diabetes, but at least I will always have that incentive now. Prior to being diagnosed, I walked a lot but I did not do any other kind of exercise. One time when I was in high school, my brother bet me that he could run faster backwards than I could run forward. I beat him but not by much. Right after being diagnosed, I made more of an effort to start exercising and decided to take up running. When I first started, I barely made it to my corner. Every day, I would take at least one step further than I would the day before. I was very proud when I broke my first mile and even prouder when I started running 10 miles a day. I have neuropathy and can’t run anymore but instead of looking back and saying, “I wish I had done something,’ I can look back and say, I did something. I know that I would never have taken up running if it were not for diabetes. When I first started, it was a huge effort but it turned into something that I loved doing.
I think it is important to find a balance between doing a good job taking care of the diabetes side of your life and being able to enjoy life.
Judith, I feel so sorry for all you have to deal with. Rage is very destructive, I know I raged when I was diagnosed, it did not, of course, help in any way. I am finding coming to terms with it a better way to deal with it since like most people acceptance is so very difficult. Have you a Tai Chi for Arthritis class you can get to, it helps enormously with the pain and stress of arthritis.
I guess by this time, I’ve accepted it. However, that doesn’t mean I have to like it…
And yes, looking at it for 50+ years is daunting. I don’t worry about that, I worry about trying to do the best I can on a day-to-day basis because that is really all that I can have any type of control over. I figure by doing that, the future will be the best I can make it.
hi judith,
these guys can give you a further perspective
just some additional alternative views…
I knew you were a passionate person! There ain’t nothin’ wrong with that. You will find a way to cope with this eventually that will fit with you. Peace comes differently to people who are fiery.
Keep searching, and have faith, dear Judith.
I’ve accepted it. I laugh at it. I was diagnosed at 46 yrs old - full blown type 1. Hows that for life sneaking in a sucker punch? And I fight it daily, keep up the battle, work hard. I’m twice the person a non-diabetic is because of my will and fortitude. And I can kick most 30 yr olds butt in a 100 mile bike ride! Because I started riding diabetes cycling events, and now I just can’t stop cycling.
i’ve listened to everyone on the list.
sometimes i go for long walks (about an hour or two) and listen to them
they are a real ‘distraction’, they are funny, informative and um, ‘on the ball’
True, true. I’ve certainly found that, those times that I wake up from “dreaming…”