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Location: Minneapolis, Minnesota, United States

Diagnosed with Type 1 diabetes in April of 1980. I recognize the incredible mental struggle of living with diabetes. I hope to share my struggles, my successes, and everything in between.

Tuesday, March 21, 2006

Facing Denial? The 5 Stages of Grief?

It seems like such a very strange thing to be looking at. I was diagnosed in April of 1980. That would be almost exactly 26 years.

How can one not have completely accepted Diabetes after 26 years? How can that be? Is it even possible?

But it seems that yes, it is very possible.

I had another very good appointment with my therapist last week. It turns out that there are many types of denial. There are the physical types, where you don't test or take your insulin. I'm not there. I do all the testing, and I take my meds.

Then there is emotional denial - as Carol said in my post about nutritional counseling, maybe the diet thing is a "last bastion of rebellion against DM" for me. Also as Theresa has commented a few times in various posts here and there.

I think there may be something there.

The nasty thing about denial, of any sort is, well, denial! I mean, by it's very nature it is something that you do not want to look at, at all.

My assignment for this month is to write a letter to my diabetes. I'm finding that particularly hard to wrap my head around. It sounds very "silly" to me at first, but then couldn't that be denial weaseling it's claws into me again?? I'm sure that I will come up with any and every manner of excuses not to do it - and that is for sure denial. But I am committed to working through those excuses and will do it. I hope that I can be honest with myself about how I really feel, and not doctor the letter up just because I know she'll be reading it.

According to her, it all centers on grief. Grief being described in this case as "a loss of normalcy".

A loss of normalcy.

Man - that says a lot doesn't it?

But what is "normalcy"? If I've been diabetic for 26 years, isn't that "normal"? Or do I see that others don't have to check their blood sugars, deal with highs or lows, eat without counting (for the most part), worry about complications or feel guilty about not controlling their blood sugars?

But under the surface I do know that I have to deal with more than the rest of the people I'm around most of the time.

I was talking with my wife about this. The whole "denial" thing seems strange to both of us, because I do check and I do count (most of the time) and I do take my meds. But, it appears that this is a different form of denial. I love different forms of things. Makes them a real bugger to figure out. Damn.

I also think that it might be something to do with the (new to me) five stages of grief. These stages would be (according to Elizabeth Kubler-Ross) :

1) Denial
2) Anger
3) Bargaining
4) Depression
5) Acceptance

I've not heard of these stages, nor really any information about dealing with grief and it's relation to diabetes.

Is it possible to get stuck in one of these stages for an extended period of time? Or perhaps a cycle between a few, just back and forth and back and forth? My therapist also says that once you reach acceptance, that you don't necessarily stay there - it's not like a "to-do" list, where you check off each stage as you "accomplish" it. Rather you may spend a period of time in acceptance, and something comes along that ticks you off, and you slide into anger for a bit. That thought disturbed me a bit, though I can understand it.

I also don't know if you go through these stages in the order listed either.

If I had to decide which stage I'm in right now, I would say it would be bargaining. You know, like I'll eat this or that just one more time, then I'll be "good". Even when I know the impact on my blood sugar will be not good. But I do it anyway. Why? I don't understand the things I do much of the time.

I really think that this journey through grief and denial will be very beneficial for me, but also very difficult to deal with.

What information do you folks have on the 5 stages of grief, or dealing with denial in terms of diabetes? Any of you gone through this stuff? And how the hell can I have lived for 26 years with diabetes and never dealt with my feelings of grief?? I just don't get it.

9 Comments:

Blogger Penny said...

I wrote a post on this a while back. The 5 stages of grief was crammed down my throat in nursing school, but I never went through them until Riley was diagnosed. The premise is that everyone goes through them in different orders and spends different amounts of time on the stages. And, yes, you can go through some stages more than once. I think I've gone through all of them before in one 24 hour period.
The kicker is, does it ever end? If the thing that is causing your grief never ends, then does your grief ever end? HMMMM....

7:42 PM  
Blogger sweetsnomo said...

I thought I've gone through all the stages of grief with my diabetes (and it's only been one year).

But I also feel the bargaining "level" of diabetes coming back - especially with my endo appt. next week. I'm using only Novolog and think she'll tell me to start using Lantus (a new phase). Soooo...here comes the bargaining...I'll drink this beer now since I know that drinking will be trickier once I start the long-acting insulin...or I'll do X now since I'll have to start Y next week.

Maybe each "phase" or time period has another cycle of grief - you've gone thru your teen years and finally reached acceptance...you've gone on the pump and, again, reached acceptance...

I'll have to see if another cycle starts with my next "phase"...

8:18 PM  
Blogger Johnboy said...

Scott, I did grieve the diagnosis though I'm not sure about the bargaining phase.

I think that maybe bargaining is close to the rationalizing that people do all the time when they behave inconsistently with the way they think they should. And yes, I am guilty of that from time to time.

One thing I didn't see in the 5 phases of grief is fear. Maybe this is a close kin to anger or depression. I'm not sure, but I think that was part of the equation for me as well.

Interesting post. Good luck with the letter!

5:43 AM  
Blogger Shannon said...

I could analyze all I want, but the thing is, you need to be HONEST with yourself.

By that I mean, how do you REALLY feel about having diabetes? Do you hate it? Feel indifferent about it? Do you fear it?

Once you figure it out, maybe you'll be able to COPE with having it.

Yes you do the checks, take the shots, but it's probably habit like getting dressed in the morning or brushing your teeth...you don't analyze why you those two acts, you just take for granted that it has to be done.

Maybe you're taking your diabetes for granted? Maybe you think of yourself as being invincible and since you haven't had complications for 26 years, why bother to step up the management beyond just the checks and shots.

That's my 2 cents :)

8:05 AM  
Blogger julia said...

What Shannon said.

This is the hard part about therapy - it makes you inspect the crap that you just don't want to deal with. Inspect it and then work to change it. It's hard. Really hard. It's painful to be honest with yourself, but if you're serious about wanting to improve, then you do need to figure out how you feel about diabetes. In my opinion, once you figure that out, you will have taken a huge step in figuring out how to LIVE with it. How to make good food choices (which, by your own admittance, pretty much suck), how to handle highs, lows and sick days. All that shit.

Good luck with it. Therapy is a real kick in the head sometimes.

9:01 AM  
Blogger Jane said...

I'm not sure about the denial thing after so many years, even though that's what I called it when I was avoiding the endo like I might catch something from her.
Yet I was still counting what I ate, being good (saving the chocolate for the low readings) and taking all my shots but if I saw a "bad" reading I felt like it was my fault, and then I'd be really good but the readings wouldn't necessarily get any better.

For me it's about my need to be in control of the situation and I'm coming to terms with the fact that I can never totally be in control of diabetes. On the other hand, I'm damned if I'll let it control me. (Hang on, maybe that's anger?)
Hope your letter helps.

3:42 PM  
Blogger laughin_laurie said...

I, too, am a nurse and we studied the 5 stages of grief in school. It applies to so many things that happen in life...when I thought I was going to lose a job I loved due to down-sizing, to friends moving away....but I never thought about it with my diabetes. I have been diabetic for 5 years and know that I often go in and out of denial....it is all due to my unhealthy relationship with food....my crutch, my comfort.

11:08 AM  
Anonymous Anonymous said...

I have heard of the 5 stages of grief but never really came to acceptance yet of several things in my past or present. I am having an unbelievably difficult time right now and not really understanding it. My past included bulemia, anorexia, binge eating, a few years of normalcy and now I have been diagnosed with type 2 diabetes, like my mother was and died not only from that but the complications that went along with it. It is six years now with this diagnoses, I have moved on to more oral meds and now up to 14 units of basel insulin. I am defying the disease, ...I am depending on the meds to take care of what I am doing to my body intentionally. Don't ask me why, if I knew I wouldn't live my life like this, I remember my mother who refused to give herself shots, I am not like that but it took me over a year to agree to it. I never knew other people felt like this until I punched "denial from diabetes" and this site came up. Does anyone ever get help to stop this deadly cycle or is there legitamate help out there? Mary B

12:04 AM  
Blogger Scott K. Johnson said...

Hi Mary B, thanks for stopping by. Yes, there is legitimate help out there, but it can be hard to find (which can make it harder to keep looking - know what I mean?).

The key is finding a therapist that is familiar and good at working with people who have faced the issues you are facing. It is also most important to be up front and very honest with them. That is probably the hardest part.

12:59 PM  

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