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Denial: A Diabetic Issue
Have you noticed the number of posts, questions, comments, or observations that start with the words “I was in denial”? I lived a good deal of my life in diabetic denial so I understand the reasons we do it, well at least my reasons. But what I don’t understand is why denial isn’t one of the first and most basic issues the health care industry attacks?
Social workers tell us that an issue denied usually becomes more pronounced. Deny teenage pregnancy, watch the teen birth rate rise, deny that drunk driving occurs, and watch the number of accidents rise. I could not find the research but I believe it generally says that the more we do not talk about things, the more pronounced they become. Yet, when was the last time you heard a health care provider confront denial directly? We do hear the horror stories of what happens when you do not take care of yourself. We have all heard them. Kidney issues, neuropathy, retinopathy among other issues. But no one I know of routinely discusses denial.
So I ask how might that be done? Well for one thing my doctor instituted a policy of not allowing an appointment to be made as you left the office. Instead appointments had to wait to be scheduled no more than one month in advance. Ok that works well for people who need to get in quickly. It is an awful policy for people who are deniers. I complained, to them for years about it and suddenly the policy changed. So I asked why and the reason was, they were losing too many clients. Wait losing too many clients? Translate that to spawning deniers.
How many people like me walk out of the office after a difficult appointment and never make it too a follow up appointment. I left a doctors office 40 years ago after a difficult appointment and did not return to visit a doctor for over 20 years. That one difficult appointment spawned a denier. It was not the doctors intent to do that, but he had the opposite effect he wanted to have. Instead of giving me a reason to comply he gave me a reason to not go back.
But of course there other ways that deniers are created. When you got released from the hospital did you leave with a doctor’s name, and appointment? Or did you leave like I did in 1974 with instructions to find a doctor, probably one the hospital appointed for me, and get an appointment for after care. I have a sense that diabetics are lost right at that point. That at least a few never make that follow up appointment.
I am a type 1, and I was 17 when diagnosed but I bet more deniers are spawned among type 2’s then type 1’s, usually at the doctor office level? You get the lecture some pamphlets and instruction to call this number to get into a hospital class. How many people drop out right there? Maybe you got a call from the hospital to set up the appointment? Maybe you showed up maybe not? Maybe the procedure helped you be a denier, maybe not?
Now I want to be clear, I am not blaming doctors, CDE’s, or hospitals for all diabetic deniers. In my case I knew better, most of us deniers definitely know better, and we have the resources available in one way or another to not be deniers. It is not the professionals who have to take the sole responsibility or even the biggest part of the responsibility.
But two things are needed. Doctors and hospitals need a tracking system to help the newly diagnosed and long term patients remain in the system if they drop out after a difficult appointment or after being first diagnosed. Follow up calls, tracking if appointments are made and kept. Chances are these are the points at which the diabetic care system becomes the enemy not the ally of diabetics.
Second we need to talk about the issue of denial and how to overcome it. For me at least, denial became a self-perpetuating existence. I did not have a way, call it an open door back into the health care system. Would it be too difficult for hospitals, doctors, or county health agencies etc. to at least distribute literature about diabetic denial? Would it be too difficult for a doctor to advertise, that if you have dropped out you can reenter the system by coming here?
I know this sounds like a daunting task, but schools face this type of thing all the time. School administrators often wonder what happens to kids who withdraw because a parent says they are transferring to a new school. Kids tend to get lost in these situations. The parents come in and say I am transferring her to a new district and then no one ever requests the records. Today that creates a notification to probation in case a child or parent comes into contact with a law enforcement agency. In Indiana, like most states, school attendance is mandatory. Diabetes is not the same system, diabetics are not required to get health care. So the same system will not work for diabetics. But with modifications some sort of system might work.
Either we view diabetes as a public health crisis or we do not. Either we accept that denial is part of the issue or we sweep it under the rug and don’t talk about it. If we do not talk about this issue, it almost certainly gets worse. 25 years ago drunk driving seemed like a problem we could not overcome, today it is still a serious problem but everyone knows that drunk driving is a serious matter. It kills innocent people.
If diabetes is a public health crisis then we can devise better systems to help people stay in the system and find ways back in if they drop out. Yes I was a serious denier and that is my fault no one else, I knew better. It took mental health counseling and a doctor willing to take this rouge diabetic and help him find a way back into the system. I have remained in the system ever since, now over 15 years. I hope it was worth the effort and I was fortunate that not too much damage occurred. Most deniers are not nearly so fortunate and that presents an opportunity to make a big difference, the question is less what to do and but who is willing to do it.