Diabetes: If you never had the chance to grieve, how to do it?

I was diagnosed with diabetes at age 14 and Im 26 now. I never got the chance to grieve about this illness that changed my life forever. I was only a child and no one told me that it would be this hard. No one told me that I would be sticking myself with needles all day everyday purposely inflicting pain...and for what?...so I can live life? This is totally crazy!!!!!....Ive been on manual shots, Ive been on the insulin pump, and let me tell you that neither one is easy, and neither comes with any benifits to better managing this illness. I have reached my breaking point, and I have come to terms with the fact that this is just a body that failed on me very early in life and without any warning that ut was going to fail me. I have tried therapy multiple times, I have tried several support groups, and I even volunteered with the ADA, and nothing is working!!!!!!

I too was diagnosed at age 14. Now 45.

I did have a pretty bad stage in my mid-20's especially when I was without any insurance or access to real health care and it seemed (for at least a little bit) that I was having no life outside of being a diabetic. Then things got better, not really sure why, but they got better. I'd like to assure you that you will re-discover lots of things and enjoy them, and still do all the diabetic-type stuff (no real need to "enjoy" that!) at the same time.

I think we're tasking ourselves with too much if we expect to follow the Kubler-
Ross "five stages of grief". We've got too much other stuff to worry about!

Acceptance is the ultimate goal of any major life-altering negative event. I believe that you have identified something that has blocked your path to acceptance. Grieving is not something to avoid but it can be delayed, for many years or even forever. I’ve found that grieving’s silver lining is that it facilitates crucial healing and moving on.

You are self-aware and that is good. Sometimes you just have to give yourself time and be patient. There’s no published schedule for grieving. Everyone takes all time that they need.

While you’re patiently waiting for this to happen, pay close attention to getting good nutrition, a good exercise routine, and taking good care of your diabetes. Talking about your grief can help, with a paid counselor or even just good friends.

Don’t give up!

I appreciate the feedback, but good nutrition, excercise, and compliance are just a few of my biggest problems

I’m not a counselor, just a fellow traveler on a similar path. If you’re not motivated to take care of your basic personal needs, you need to figure out what’s blocking/sabotaging your efforts. I could offer a never ending stream of ideas to help you but until you’re ready to take ownership of your situation, it’s very difficult for anyone to help you. I know that this may seem less than helpful but I don’t know what else to say. I wish you well.

Don't know whether this will help, but it's worth sharing. A long time ago a very smart person told me, "When faced with a problem to big to handle, handle one small part of it, then look at it again."

You list "good nutrition, exercise, and compliance" among your personal roadblocks, and perhaps there are others too. Why not single out just one of those to deal with and simply leave the others for now?

"Then look at it again."

This is a tough one, Annette, because if you're anything like me, no one is going to be able to say that one thing that makes it all better. I'm like you - diagnosed at age 11, now 28, and yeah, it's a tough road to travel. I guess I kind of had a moment of clarity one morning. I was laying in bed, and I let my mind wander into that dangerous territory of, "what's going to happen to me if I don't get my act together? am I going to be blind and alone? what kind of life will that be?" I basically had a full on panic attack. It's not that I'd never thought about it before, but I just finally said enough is enough. I'm a grown woman, and I can deal with my own s**t. First thing I did was go to therapy, before I went to a doctor, even. I know you said you've been to therapy, but maybe you need a better counsellor.

As far as grieving - that was a hard one for me. I was 20 when I learned a little neighbor of mine, then 8 years old, had been dianosed with diabetes. I was laid out, I tell you. It was like in grieving for her, I was really grieving for my 11 year old self who had no idea how my life was going to change.

Anyway, I don't know if any of that's helpful. I like how Terry put it - I'm just a fellow traveler who's been where you've been. If you want someone to talk to, please contact me or anyone. I guess just remember that it's not a matter of getting everything right. It's just a matter of cheering that one good thing you did, even if it was only one out of 10 things you might have done well. Don't underestimate the power of 1 good thing over 0 good things. It's one step in front of the other, and whatever you do, don't put yourself down about what you messed up. Celebrate every good decision you made. When I was at my worst, I remember getting so excited that I'd remembered to bolus for a Snickers bar. It wasn't about not eating the Snickers, 'cause that was never going to happen - I wasn't ready to give up my junk food. But I bolused for that thing, and I was frickin' excited about having done it. Now, I can do without the candy bar. But that was a process, and it didn't happen right away. So be excited about your good steps, and try not to freak out about what didn't go right.

I was older when I was diagnosed (at 27) but it took me a long time to get through the grief. I took the route of denial for several years, paying as little attention to my diabetes as possible. Then I realized that my daughter needed a mother who was going to be around for a while. She was my motivation to shake myself and start taking care of myself.

It's hard, but look toward your future. There are so many really good things in life that you have yet to experience and you want to be healthy enough to be able to enjoy them with the people who love you.

Take care, you can get through this. :)

For "failure" sounds like you are very active and very healthy. You are NO worse off using MDI...

Ok, now among your true peers, your fellow diabetics I ask what's going on, that you have become concerned?

I have been in and out of the hospital for the past 7 months because of kidney infections and DKA. Im concerned because Im ignoring my diabetes and all the care that goes into it.

Im glad to hear that you have found that one or many things that motivate you to take care of yourself and your health....but unfortunately I dont have those kind of motivations present in my life at the moment. I dont see myself having children because I dont have the patience, but I have yet to find that motivation to take care of myself and my health. Im the kind of person that doesnt find motivation for someone else but it has to be for my own benifit, and at the moment theres nothing that I would be benifiting from by being a "healthy" diabetic. I appreciate the encouraging words

I have had db for 39 years and think I' still grieving. But it's over different things, at different times. And it passes.
I had to give up driving 10 years ago because the lazer treatments which saved my central vision destroyed the peripheral vision. I always drove Honda Civics. Last fall I was strolling down the street and saw a Civic, the exact color of one I had owned, and immediately started sobbing. And continued to cry for another day. But, my motto is to just "wait it out" and soon you'll be thinking about something else.

My motivation for taking care of my diabetes is to prevent the complications that are preventable. And since I have a 'defective' pancreas, there's no other choice than for me to accept the responsibility to balance my blood glucose.

For me, grieving was getting past the question of "why me" and "it's not fair", and there is counseling or many self-help books to help with that. Eventually I came to accept that's just how it is. Everyone deals with this in their own way.

Part of your struggle is likely related to how physically bad you feel due to high BG and DKAs. I agree you need to find what motivates you, even if it is just one day at a time. And focus on one thing at a time, for example preventing DKA by remembering to take your insulin, and checking BG. Later setting a goal for BG range, or percentage of BGs to be within a range, and gradually making steps to improve that. If you need education, there are several good books and many good discussions on this site regarding food, exercising, etc. Make a goal to read and learn more.

I hope you will find encouragement from this community; your progress will not come overnight. But you have to start one step at a time, and you have to believe it's worth the effort, as shared by the many stories on this site.

So, do it for you & maybe think about the feelings & motivations behind not taking care of yourself. Easier said than done, but we often sabotage ourselves without examining why. Difficult to view ourselves objectively. Resolutions to do better don’t last because it’s an ingrained pattern that we’re not aware of. The slightest slip up becomes proof it’s helpless, hopeless & we’ve failed or feel like a failure. Then, into a deeper hole of guilt & anger. Try to be kind to yourself. There’s no simple answer or easy way out.

I heard about this - aka pity party at a recent CWD FFL event in Canada. From Joe Solowiejczyk whose had diabetes for I think 55 years (I’ve only had it for 48). He was hilarious in the way he told about it - and I’d posted his “youtube” video in my blog I posted - here - http://www.diabetes1.org/blogs/Annas_Blog/2013/3/21 . Tho’ I think the one he did in person with all of us was way better (I was laughing so hard - had tears streaming down my face).

I don’t think I’ve ever had time to have a pity party - it’s probably not in my nature - British parents - stip upper lip - tho’ I’m totally that abnormal person in my family - very open about what is bugging me - open about diabetes - etc.

I guess I try not to let diabetes get the better of me? Is that the nicest way to say it? I rule over it - not the reverse. Oh and having a cat or two helps me with coping.

Cute picture, Anna, and agree about the cats! I actually agree about all the things we do in our lives that are not about Diabetes. Diabetes is, of course, 24/7 and it can take over our lives...worse yet, it can become our life. When people say, "I'm not a diabetic, I have diabetes" it sounds like they are just being picky about words. But it's a critical difference. We on TuD are the elite of D management; we all know that not every diabetic of either type manages their D with as much attention, knowledge and precision as we do. Which is all great. Being an overachiever in life has definite perks: Success, admiration, money, satisfaction. But it also has its down sides: Narrowness of focus, exhaustion, burn out and just plain failure to enjoy! We are, most of us, over-achievers.

I feel like I am going against the group culture at times when I say things like "there is a point of diminishing returns on testing", "eating lower carb than I do would diminish my quality of life" or "I don't want a CGM because it for me, would become obsessive". "But those things would improve your numbers!!" I hear the dismayed responses. Yes, they probably would, but at what cost? It isn't all about numbers. It isn't even all about Diabetes. It's all about life. Management is important for our health and so we can continue enjoying our lives in relative health for many years to come. But if life is all about struggle it isn't life. My suggestion: Do what you need to do to manage your D, then go out and play.

Balancing diabetes care with the rest of life is complicated and there is no one right answer. We all exist on a spectrum with how we care for our diabetes, from completely ignoring it to obsessing over it to the extent that we don’t like our lives. Somewhere in the middle of that spectrum is a healthy balance for each of us. Since we all have different values and personalities, we all pick different balance points and exercise different trade-offs. In fact, some days I make different choices because I feel slightly different that day.

Since I do pay closer attention to my D management than the average PWD, I am sensitive to being labeled as obsessive. Especially if that is being voiced by non-D medical professional. I know from real life experiences what can happen when I don’t keep track of my BGs. It’s easy for me to understand a non-diabetic thinking that several shots and finger-pokes each day is a miserable existence. From my perspective, inserting infusion sets and testing my BG is the easiest part of managing my diabetes.

In the last year I have greatly increased the amount of time that I devote to taking care of my BGs and I’ve enjoyed good results. Once this new routine is a habit, it leaves me plenty of time to enjoy the non-D part of my life. This is not a trade-off that everyone would make, but for me it’s worth it.

You make an excellent point, Terry, that what is "too much" (obsessive) is definitely subjective. It's funny because I was told by a friend and her husband (who barely even recognizes he has Type 2) that I "tended to obsess about things". And yep, I resented it because they have no idea what it takes to manage D. I made some calm, casual comment that "when you think about the negative consequences of neglecting D, I think it's better to err on the side of Over-managing". But while "obsessive" is, like "non-compliant", one of those words we hate hearing from others (especially those with no clue), I still think it can be a lack of balance. Where that point lies for each of us, when things become "out of balance" is something we each need to identify for ourselves. But not everyone knows to look and, as members of a culture that says "more is always better" (except of course when it comes to A1C!) I think it's important to raise that flag. (And, I think relevant to the OP)

I also think that it isn't so much a matter of how much time we devote to D; how many times we test, etc. But of the care we take with the rest of our lives. I think people with a chronic condition like ours that does take so much time and attention, need to work extra hard at making sure to enjoy their lives and make time and space for "play" whatever that means to each person. I think this also relates to the sub-clinical or even clinical Depression that many of us suffer from. One of the behavioral treatments for Depression is to be sure and do activities that give us pleasure.

words of wisdom. youre right, zoe, its not all about diabetes. hard to remember sometimes, but when i do, life is much more enjoyable.

Zoe - I heartily agree that we all need to play. And laugh. And not take ourselves too seriously! It’s good to be reminded of that.