Dia-cide... ("suicide" by diabetes)

Type 1 and LADA
21

I am currently struggling with diabetes and burnout myself. I just don’t care anymore. I’ve seen this disease take people whom I loved without any thought to me. I have all the best tools to do what it is I need to do, but just can’t seem to do it. I have heard it from everyone, but it doesn’t make a difference to me. It is my choice to treat my diabetes this way. There are days that are better than others, but it’s a day to day effort. Some days I’ll wear my pump, others, I might bolus and that’s it.

I’ve had people reach out, but for me, it’s not something that you can come at me full force with as that will make me run and shut down almost immediately. It’s a gradual thing. Encourage people to slowly make changes and hopefully those changes will stick. That’s my input. I’m sure everyone is different and this might not work with everyone.

1 Like
22

Hello carrp12000:

“Non-compliance” is a severely judgmental label. You should consider far (sic. any) better ones. Surely you have something better than get “help”… ??? Your sister, your niece, your fiancée was in that space, that would be the extent of your help?

How bout something more pragmatic… ?
Stuart

23

I think, more than anything else, it’s denial that most of us
either deal with, or have dealt with. A willngness to believe that the
Bad stuff we know can happen will not happen to us. That, and just
An outright exhaustion from dealing with the demands of
Our disease every single day, day in and out with no end in sight
I think in some respects, it would be abnormal not to suffer from a bit
Of burnout and denial. D is an extremely unique disease mother diseases
May also be classified as chronic, but there aren’t too many of them that
Require the constant attention and resources that D requires of us.
When I think back onto my own worse case of denial, well shoot, it was
So long ago, bg home testing was not widely accepted and I was at the
Time only obligated to administer 2 injections of mixed insulin a day
Compare that with the almost hourly self assessments that optimal
Care now demands of us. I don’t think I care for the term dia-cide,
I think for most of us, it’s not that we don’t care or have given up, it’s
That denial has made it possible for us to think it can’t possibly happen

1 Like
24

With everything in life - nothing will happen until you’re ready. Yet, sometimes an encouraging word or a sentence or something else, including the way you think, might make you think or do things differently.

Elizabeth, I’ve been where you are, and I got out the other end. I do know it was gradual. And yeah, if anyone would approach me, in whatever way, I’d politely tell them where to go. Sometimes not so politely.

It didn’t matter what people told me about long-term effects, I just didn’t care then. For me, it was partly that I didn’t care enough about myself generally (major self-esteem problem), and partly a bunch of other things, including anger at this stupid unrelenting disease.

It was my own judgments added to ‘what is’ that contributed to my downward spiral.

I also realised that self-esteem isn’t just one, all-encompassing thing. I broke it down into all areas of my life and realised that I did have lots of esteem in some areas, and zero in others. That was a huge surprise.

Along with ‘I really don’t want to feel so crap all the time’, and eventually reading to understand how I could have better control… many things were catalysts to slowly changing quite a few things in my life. I didn’t even set out to make those changes - they just happened as a consequence of understanding myself and thinking differently.

You’ve got a good grasp on how things are for you. I think it’s a great lesson for others, who can sometimes be judgemental or beligerant.

Please keep an open mind and an open heart that things may turn around for you, even if you don’t care right now.

Oh, and who says it’s not ok to wear your pump some days, and bolus on others? I know lots of people who do this as a routine.

So, I’m encouraging you to slowly make changes… (per your instructions!). Actually, I’m not… I’m encouraging you to think about why you ‘just don’t care anymore’ and to see if there’s something in there that you could slowly think differently about. The rest will follow.

It’s really worth the journey, even if you don’t think so now!

I hope I’ve not been too ‘full force’. My intention was to relate how things changed for me, not to tell you what to do… really, just to tell you about an area to explore that you may not have thought of… if you feel like it.

1 Like
25

Hello Stuart.

I run a not for profit organisation for t1’s who also have eating disorders including Deliberate Insulin Omission. It has often been said that eating disorders are like slow suicide and to a certain extent I agree with that. The one thing that I have learnt is that shouting and judging don’t work. In order to deal with something as huge as diabetes the first thing that is required is an open, relaxed environment. People who struggle often feel embarrased or ashamed or are completely in denial. It’s really important to ask open ended questions for example 'do you always take as much insulin as you should? and making the diabetic comfortable enough to just talk, ‘don’t you know that you’ll die…go blind…etc’ Will just make someone close up. T1s are at twice the risk of depression and this is something that you should take into account. Talking therapies can also be useful and I have seen a lot of positive outcomes among girls that have cognitive behavioural therapy. Also baby steps can be important, it’s going to be really hard to get someone who hasn’t tested for a week to do it 6 times a day, you have to be open to increasing these sort of things gradually. Also trying to introduce your loved one to others with diabetes can be really effective, get them to join a support group where others are struggling too can make all the difference. Before I found the girls in my support group I actually thought I was mad, I genuinely thought I must be the only person in the world that was stupid enough to not take my insulin. My HbA1c was 17 and I had retinopathy, neuropathy, kidney damage the whole schbang but I still couldn’t bring my self to inject or test. That was 4 years ago, and now I have no complications and my last HbA1c was 8.4. Recovery is possible it just takes the right environment. If you want to talk privately please feel free to PM me.

26

Jacky wrote;When I think back onto my own worse case of denial, well shoot, it was
So long ago, bg home testing was not widely accepted and I was at the
Time only obligated to administer 2 injections of mixed insulin a day
Compare that with the almost hourly self assessments that optimal
Care now demands of us. I don’t think I care for the term dia-cide,
I think for most of us, it’s not that we don’t care or have given up, it’s
That denial has made it possible for us to think it can’t possibly happen

I was there in my twenties to mid thirties ( Now almost 56); As Jacky wrote, the constant vigilance that was required when the DCCT trial came out about tight control was overwhelming to me as an old-school diabetic. I took my once daily shot,avoided simple sugars and desserts, exercised, and was quite active. I never got sick, nor had any hypo seizures and pass-outs, nor did I go into DKA. And my A1c’s were inthe low sevens. I did not really WANT to be super-vigilant. It was part of my denial to say that I am not sick and I do not have to do all that. My biggest motivator for tighter control occurred when I actually did get quite sick from non-diabetes issues in the following years:iron-deficiency anemia,endometriosis, ovarian cysts, clinical depressions, b-12 defeciencies, pnuemonia, spinal stenosis; I realized that I had to take care of ALL of my health… including the diabetes, which I had kind of pushed to the back burner. I began to think in terms of long-term health rather than it is ok today so “fahgeddaboutit”.

God Bless,
Brunetta

2 Likes
27

Hello Doris:

What ACTION can one take to help someone who has been crushed by this dragon we all share?

If the ship is engulfed in flames, are words the appropriate tool?

Stuart

28

Hello jackie:

First, thank you for taking part… more soon, I ran out of time this morning. I too am not wild about the term dia-cide, or its implications but in truth I fear it definitely fits.

A very, very “passive” set of actions…
Stuart

29

I have discovered over the years that if someone does not want to help themselves, there really is not much you can do. What made a coupld of my diabetic friends more compliant was after I had DKA…740 was my blood sugar. After a couple of days in ICU, it scared me enough to take better care of myself. While I am not 100%, I did go on a pump, and do test more frequently. When my friends saw me getting healther, they discovered they could do it too. Forcing anyone to do anything just does not work. Lead by example…

30

I hate to say this, but I’ve seen the other side of the coin and it isn’t pretty either. Spending all my time so worried about my bg’s and insulin and hypos that the rest of my life had to shut down. Isn’t that a kind of suicide (at least social, or work, or academic suicide) too?

Of course there is a middle ground where both aspects get the right and healthy attention. But it’s so easy to veer off that middle ground, psychologically.

2 Likes
31

Pushing doesn’t help. Ranting doesn’t help. Catastrophizing doesn’t help. Blaming doesn’t help. Guilt-tripping doesn’t help. Listening a lot might start to help. Might help you to figure out what is going on that caused the giving up – burnout, helplessness, rage, waiting for rescue, fear, overwhelm, etc. Then more listening for what might help to shift that. Be there without the judging and advice. Join them so they don’t feel as alone with it all. Show them you care by giving what they need, not what you think they need.

By listening I don’t just mean being quiet, though that is the place to begin. Ask a few open questions, starting with ‘how’ or ‘what’. Let them know what you are picking up–‘you seem fed-up with it all’, etc. Then be quiet and listen.

Rinse and repeat daily.
Been there.

32

I have given up. How long will it take?

33

I can relate to you so much ! i did the SAME EXACT things you did … especially the oding on the insulin when i knew i was high … and just like you i had a wake up call when i saw the effects that diabetes has onsa persons body first hand … watching a person deterioate before my eyes made me realize i needed to take care of myself and appreciate my life … im a slow path to recovery ! keep doing what your doing and push past the struggles !

34

Stuart, the problem isn’t talking them down and out of it. Because therapists and counselors will tell you that people who try to kill themselves don’t want to succeed, they just do succeed. They really do want someone to pull them out.

In the case of your dia-cide, there are so many factors that evolve around it. Money, a sense of hopelessness, a sense of never being able to do the “right” things to be healthy, no cure, They frankly have given up…and don’t care. You can’t make someone care, you can’t make someone take their meds, take their sugars, eat healthy, have hope when there is nothing inside them that says it’s going to work.

But you can be there to support, encourage, and walk with them. Don’t shove it down their throat, don’t harp on them about their situation, just be there to listen, take them to appointments if they have them, take them places where they can be “normal” and see that life goes on even with diabetes. When I get depressed and down about this disease, I don’t want someone harping on me about what I am doing. I just want to be able to be miserable, and an arm around me to help me back up.

35

Hello Muragaki:

Thank you for taking part.

Do you think there are ways to give others that belief, who have “quit”? Any way to challenge or suggest it so it might stick?

Stuart

36

Hello CaKats:

Thank you for taking part as well!

A question if I may… how does one plead effectively? When I hear the same words repeatedly diabetes related or not, it looses any effect. Well meaning, if the method offends or is in any way intrusive, under the best cicumstances I ignore them… under the worst, there is massive “bloodletting” (and it ain’t mine)…

Any ideas how one can be effective with the pleading approach?
Stuart

37

Hello Alice:

Thank you for your thoughts.

Can this “self destuct” be self preservation on some level do you think?

We cannot test its…emotionally too hard, too frustrating, too self injurious… take your pick so we stop for a some brief time. Is that the same or different IYO?

Stuart

38

Hello Michael:

Appreciate your comments, thoughts, thank you.

If we screw-up well enough, in the “right now”, neither the past or any future matters at all. The right now can kill.

If in spite of the BEST and text book zealous efforts, what happens if the complications occur anyway? What then?

Stuart

39

Hello Jennifer:

Thank you for participating…

Glad to hear things are improving. The only problem with A1C gold standard is that it is an average.

Meaning I could well have text book perfect readings to get an ideal A1C, or I could have a hell of a lot of lows, and highs to get said number. It is a flaw of that method. Nothing wrong with eating crap or not exercising, simply cant make them habits ; )

Stuart

40

Hello Jconroy:

Thank you for your input as well…

What is the connection between self-esteem and “dia-cide”? Because we are diabetic we harm oursleves?

Stuart