Feeling Guilty About Feeling Guilty

Type 1 and LADA
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I was a member of another diabetes support group a few years ago. Here is a blog I presented there in 2013. The only edit I have made in the old blog is for the number of years I have been a T1D.

For many years now I have been thinking about the past and the fact I knew so little about my T1 diabetes. My doctors did not know much either. There were no T1Ds that I knew back then, in fact there were no types when I was diagnosed in 1945. Types were identified years later. I lived in a rural area in south central Virginia for my first 23 years. Given those circumstances, maybe I should not feel guilty about my ignorance, however, I now realize that there were parts of the country where many newly diagnosed diabetics had very good doctors who knew so much about diabetes. I have seen many fellow medalists post that they were patients of Dr Joslin in the Boston area. Dr Joslin specialized in T1, and he even wrote a book about T1 in the years 1900-1950. That book can still be read online…very interesting. If I had read that book in my younger years, I would have had much more stable control. Some medalists have written about knowing about carbs, and weighing their food. I never heard about carbs and their effect on T1 control until the lats 1980s.

Many days I feel guilty that I knew so little for so many years. Why? Well, I was in college 1957-63 and there were libraries where I could have researched T1D. Maybe Dr Joslin’s book was there? I might have visited larger cities in Virginia and searched for a doctor who was more knowledgeable about my diabetes. I did visit a doctor in Richmond in 1970. He was the one who told me my life expectancy would have me die before I was 40. I was 31 at the time. HA! I hate doctors who use scare tactics!!!

My management in the 1945-1995 years left a lot to be desired, and I cannot help but feel guilty about that. There were things I could have done to learn more, but ignorance prevailed, and I did nothing. Well, I avoided sugar, and that was the only advice my doctors gave me during my early years. I ate tons of food, all kinds, but avoided sugar. I thought I was doing everything appropriate to avoid complications.

I joined online diabetes support groups starting in 2006. There were some T1Ds who had been on diabetes message boards as far back as the mid 1990s. Why didn’t I know about them? More guilt. Some of my long term online friends have known about carbs and carb counting many years before I did. Their diabetes management was so much better than mine until the current century. More guilt. I felt so grateful to find so much wonderful information online and I have had much better control.

More recently I have forgiven myself for these feelings. I have been a T1D for 71 (edited) years, and the only diabetes related complication I have is some mild nerve damage. Even if I knew all the things I know now during my early years, I might not be any healthier. It is time I stop feeling guilty. Sometimes I feel guilty for having felt guilty in the past, but that is a forgivable kind of guilt. :slight_smile:

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I wouldn’t be too hard in judging yourself. You made the best choices you were aware of at the time. My diagnosis only goes back to the mid '80s and I wish I had changed my treatment plan much sooner than I did. We live in a world of competing demands for our time and we don’t always make the best value judgment in how to allocate that time but most of us do the best we can.

As far as guilt goes, I think it’s something all humans feel. I look at feelings of guilt in two distinct ways. If I feel guilt and it can be used to release that guilt, like apologizing to a neighbor for some thoughtless remark you made, then that guilt is productive and demonstrates your willingness to accept personal imperfections.

But guilt that offers no reasonable path toward addressing its basis, I think we need to let go, let ourselves off the hook. We’re human. We make mistakes. If you’re likely to advise a close friend to forgive themselves for something like you’re worried about, then you need to treat yourself at least as well as a good friend. Let it go. Life is too short!

You continue to inspire us, Richard!

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I struggle terribly with feeling guilty and actually disappointed in myself. I feel this way because I was undiagnosed for such a long time and allowed being dismissed by medical professionals. I simply did not know how to be heard by them (possibly because it was always another nurse or physician who saw me because I was an unattached patient). Many days I think ‘if only I had been diagnosed when I first started to be ill I could have avoided my complications’. I know this thought is so pointless but it haunts me on days where I am particularly unwell. Rationally I know that I need to let it just go but haven’t been able to yet…

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I don’t think I’ve ever felt guilty. When I was diagnosed in 1961 at age 18, I didn’t even know what diabetes is. I think I was just relieved that maybe now I would start to feel less tired & thirsty & get on with studying for my A’ Levels. I was old enough to do all my injections & pee tests by myself. The hospital did discharge me with a gram scale (which I still have) & diet sheets, so yes I weighed potatoes & bread etc.

I think early on I felt if I followed the rules I could live the life I wanted including hitch hiking around Greece & Israel. I’ve
given insulin injections in some very strange localels. I think in those days insulin was much less susceptible to heat changes etc.

Over the years as information became available I taught myself to carb count, never did like portion control. I decided I needed R insulin at lunch as well as morning & evening. I also told friends & colleages so if I started acting strange they’d tell me to go eat some sugar.

Now if I have an unexpected high or low BG I’m more likely to say “I hate diabetes” than feel guilty. I wont accept that my life is ruled by diabetes

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Richard, Terry - my experience is similar in some ways, as my diagnosis was between you two.

I think I had more feelings of regrets than guilty. Regrets that the family pediatrician I went to through high school thought I was in great control, because I never passed out or had DKA like some other patients. He always told my mom I was doing great. I later learned that the Joslin Diabetes center in Boston was 4 hours away, but never any mention that it might be an option for my parents to consider a consultation with. I sometimes wonder if I had gone into DKA, or had serious lows, that maybe that referral would have been made. So maybe I feel guilty for not having DKA, and getting a referral to Joslin, which may or may not have led to a better outcome.

Then it was off to college, where I saw my first endo. Being used to that easy 1 injection/ day, my ears were closed to anything the endo said, other than it wasn’t a matter of IF, only a matter of WHEN the complications would come. Said ‘we don’t know why’ or how to prevent them. BG testing was still not available at that time, and I don’t recall doing any urine testing in the dorms, and no A1Cs were done. In some ways, I’m glad I had a pretty normal life, other than one injection each morning, and oblivious of the potential harm being done, with no tools or knowledge on how to prevent. .

Several years later, after changing to a new job and location, I found a new doctor and was able to attend a Diabetes Education program that covered many individual and group sessions over several weeks. I switched to caveman MDI (NPH+Reg), and started 2-3 BGs per day (visual readings), primarily before meals to determine whether to take 1 or 2 extra units of Reg (sliding scale). Was taught the ‘exchange’ diet, which we know is carb heavy. I didn’t keep records, but think my A1C were in the 10-12 range at that time. Here I feel a little more guilty, as I didn’t take this as serious as I could have. I didn’t make many diet changes, and was busy getting settled in my new job. Other than the diabetics I met during the group settings, I still didn’t know any other T1s in person. I think it would have made a big difference if I did (if they were a good role model).

Big guilt kicked in when I was diagnosed with retinopathy, and about that time the DCCT studies were releasing news about lower A1Cs and decreasing complications. But with NPH+Reg, and 3 pre-meal BGs/day, I’m not sure I could have done much better.
Later a new endo suggested an insulin pump, to help me get my A1C under 9. But all I thought of was the inconvenience a pump would be, and not ready to consider it. More guilt after I finally switched, and wondered why I hadn’t done so sooner. Joining an in person support group, with other diabetics sharing their experience with insulin pumps was definitely more effective than the endo telling me about it. (But why didn’t the endos know that would be helpful ?)

I think we all ‘even it out’ by balancing the blame/guilt/regrets with the positive outcomes from joining in person or on-line communities for peer support, whether it be for diabetes or any other life situations. We can’t go back and change the past, but can change how we go forward.

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Perhaps you could use a private ceremony to release yourself. You could write down exactly why you feel guilty and then at an appropriate place, day and time, burn that note. I ascribe to no religion but I think that ceremony and ritual connect with our humaness. Just a thought.

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Forgive me if this is too philosophical. I have learned that I am likely to feel regret when I look at the past and that I feel anxiety when I focus on the future. I am always fine in the now. Obviously this is easier said than done. My ego is afraid to die in the now and wants to wonder off. Things got better for me when I realized that I am the thinker of my thoughts. When a thought enters my mind, I can dismiss it. I can say: “You are an unpleasant thought. I will not spend time with you.”. It also helps a lot if I refer to myself by my name instead of I. I say to myself: Helmut is obsessing or Helmut is thinking negative thoughts. It is amazing how this takes the power out of the negative thoughts.

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I’ve been struggling with similar feelings for a long time. This thread has truly been a breath of fresh air. Thank you for posting this.

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You’re right, of course, that we can’t change the past, what we can change is how we frame the past and what control we let it have over the present.

I can’t imagine going through teenage and college years with D. I would have been the worst person for taking care of myself. Good to read you account.

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Hey people, what’s with the regrets & guilt. I’m still here after 56 years. I was told maybe I’d make to 40 or 50, I think I ignored that , yes I have retinopathy in 1 eye, but I’m not blind my one diabetes fear. So enjoy life & cope.

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Excellent reply, MM1. That sounds so much like my feelings about the past.

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Richard, I can’t prove it but I have a suspicion bordering on certainty that you have lots and lots and LOTS of company. My sense is that many of us here went some time before having that “aha!” moment that permanently changed our level of understanding and involvement. While I don’t have anything resembling your 71 years to point to, I certainly followed a similar path. Diagnosed 20-plus years ago, for the majority of that time I took the pills my doctor prescribed and my thought process ended there. Eventually someone nagged me into reading one of the better books out there (doesn’t matter which one) and a glaring light bulb came on. Pretty soon I was reading everything I could get my hands on and exploring the DOC. Not long after that I changed doctors and demanded insulin. Life’s never been the same since. I could berate myself for waiting so long (and sometimes do), but . . . you can’t fix yesterday. Onward!

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Thanks for your “thoughts”. I don’t even talk to those thoughts…only send them down and imaginary river, like a leaf.

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