Denial is a state that some people with diabetes spend at least a little time in. To me, denial meant that the fact that I had diabetes was at the bottom of my priority list. I really meant to get around to it but... I had no idea how to deal with the fact that I had diabetes, so I mostly ignored it, unless there was a very high or low blood sugar. Either no one knew I had diabetes or I changed the subject when it came up. I never actually denied it's existence in my life, but tried very hard not to acknowledge it or the impact it had on me. It was an area of my life that was full of a sense of annoyance, failure and a lack of hope for the future (which I really didn't expect to have anyway, because that is what I was told by uneducated doctors.)
This state was punctuated by brief but intense periods of fear about the damage that I might have been doing to my body, self-blame for my inability to get deal "properly" with diabetes and above all, the knowledge that if I did ask for help, I would be judged harshly, because I always had been.
Although I think that treatment of people with diabetes has improved, some people when diagnosed are told how to take insulin, told what to eat and given a long list of what not to do. This is accompanied by an even longer list of the possible serious complications that may occur if the person strays one iota from the prescribed plan. The toll from the fear that this inspires is large and very hard to deal with. Most people attempt to maintain strict control over diet, insulin and exercise but it takes huge amounts of energy and dedication to maintain this level of inspection. When this vigilance is rewarded with blame and recrimination ("What have you been EATING?" "You have to try HARDER!"), a sense of helplessness takes over.
To be expected to watch every mouthful of food, monitor every movement and account for hard-to-measure things like stress everyday, for the rest of your life, is just too much. Add to this the inherent variability of diabetes, which does not always react the same way to the same event, a potential lack of support from people who do not understand the seriousness of diabetes and the work it takes to stay healthy, and the sometimes thoughtless medical professions who hammer away at the possibilities of blindness, kidney failure, heart attacks, amputations and decreased life span without considering the emotional impact of this information and technique, and you get denial. (Something that really makes me mad is that the above are possibilities, dependant on many factors, but no one seems to explain the many factors angle, they just assume the worst).
I think that denial or avoidance is a very normal reaction. It is the mind's way of protecting itself in extreme circumstances. Who wants to deal with one's mortality every second, especially if all those threats are described as inevitable unless you are more than perfect? I couldn't and I didn't. Unfortunately, once in denial, many people stay there. No blood testing, no attention paid to diet and exercise, no adjustments made to insulin (or "forgetting" to take it) and above all, avoidance of doctors or anything related to diabetes. This makes the very scary consequences of uncontrolled diabetes, which were probably one of the things drove people into denial in the first place, that much more possible.
The people I know who have not experienced denial had excellent medical care when diagnosed, which taught both the physical AND the psychological/emotional impact of living with diabetes. Their continuing medical care is non-judgmental, allowing for the inevitable human error and emphasizing how very hard it can be to maintain good control at all times. It takes into account the frustration, fear and anger that occurs when you do everything right, but nothing works. It is more flexible, allowing people with diabetes to forgive themselves after a slip instead of giving up completely, knowing that they will not be yelled at and lectured, but encouraged to start again.
I have known I was in denial for many years - I would go in and out of it regularly. I have waited for some "thing" to occur to pull me out of denial permanently, I have seen a therapist regularly (never really getting around to talking about diabetes) and I have worried about the damage I was doing enough to make life miserable, but not enough to do anything about it.
So what happened this time? I am not really sure. I think it was a combination of moving to a new city, finding a supportive doctor and being very frustrated about my lack of progress in dealing with diabetes. I am also older, have learned a lot about myself and I now have skills to deal with pretty much any crisis, having been a crisis counsellor. I finally have been able to turn the skills I use with other people into resources for myself. This was very hard to do, but seems to have come with time and self-acceptance.
But I think the real turning point came for me when I saw a new endocrinologist and he told me that, despite 18 years of mostly uncontrolled diabetes, I had very few physical effects of diabetes and that he found that if complications hadn't set in yet, they became much less likely. This is no guarantee, but it lifted something from me and I was able to set aside 18 years of guilt and get on with life.
It has not been easy and some days I wonder why I bother. But when my blood sugars are good, I feel much better, both physically and emotionally. Above all, I feel like I finally have control over what happens to my body.
This feeling is addictive but I know that I could have a period of inexplicable rotten blood sugars, get frustrated and give up again. So while I feel motivated, I have set up a support network to rely on. The biggest source of inspiration and support for me is the Internet. I found several mailing lists and newsgroups and have some good friends with diabetes, something I have never had before. I feel less isolated, get the latest information and can vent about how much life can suck with diabetes. They understand, and help a lot. Things do go up and down, and I have periods of time where doing a blood sugar does not cross my mind for days, or weeks. I usually am startled to find how long I have gone between testing, but am fairly lucky because my blood sugars are mostly cooperative and the pump does a lot of work for me (because my basal rates are accurate for 90% of the time). I am in tune with my body enough that if I do feel weird, I do a blood sugar immediately. I no longer just put it off.
I am trying to be less perfectionistic and accepting "detours" as something to learn from, instead of reasons for giving up entirely. Hopefully, the next time things are going badly, these things will add up to make denial seem much less attractive.
When I wrote this page, I was really unsure about putting it up for a variety of reasons. I am very glad I did, because so many people have responded so positively to it. Many people see their own experience in mine, and while I am very sad that so many of us have felt this way, it also seems that talking about it does help. It seems encourage others to stop listening to those judgemental voices we hear and to get past the guilt trips people seem to feel entitled to use on us. You really do have to do it for yourself, because you want to feel better and because you do deserve a healthier life.
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