Hyperglycemia Phobia: When tight control becomes dangerous

A friend of mine I’ve known for years has a problem with lows. He’s had diabetes for a almost three decades, and many scary low experiences. He’s crashed a car, been pulled out of the water while surfing, and almost had a hotel room door beaten down by concerned co-workers. All of these were because of bad lows.

He’s hypo unaware and pursues extremely tight control, both of which contribute to these particulary bad lows. He’s on a Dexcom now, and that helps, but it doesn’t catch all of them. I’ve been out with him and seen his face change as he heads toward a low. I see the sweat appear on his brow and his words start to slur. I bring him a coke, no ice, without being conspicuous in case he’s embarrassed, but he refuses it. Only when he’s on the brink of passing out does he get something to treat his low, and he only accepts help from an extremely short list of people in his inner circle. It’s not healthy and it’s not safe. And it’s even scarier because he has a young daughter.

People talk about this person. They worry about him and his daughter. They shake their heads and they don’t understand why he runs so low – they can’t understand why he’d put himself in danger just about every day. To be honest, I don’t really understand it either. I’m the type of person who’d rather run a little higher while driving/surfing/traveling for the sake of safety.

But then I heard about another person who has this problem, at a diabetes conference. I heard about a man with the same issues as my friend. He ran low all the time, to the point of passing out frequently and putting himself and others in danger. He nearly lost his marriage to the problem. But he and his wife went to counseling with someone who specializes in diabetes mental health and he was clinically diagnosed with a special phobia: a deep fear of hyperglycemia.

This man was so afraid of having a blood sugar over 120mg/dL that he equated the feeling of a high with “fire alarms and bells screaming in his head” for him to get out of the danger zone. He said a high blood sugar caused him so much anxiety that he’d do anything to avoid them – even run dangerously low. For him, a high blood sugar felt as bad as trapped in a jail cell, and the discomfort pushed him to unreasonably tight control. As soon as I heard his story, I wondered if my friend suffered from the same issue of hyperglycemia phobia.

Most of us fear lows more than highs – they cause an acute issue that demands immediate attention. Highs can languish and be uncomfortable, but running higher can provide peace of mind that you won’t bottom out during an activity. But there may be sub-set of people with diabetes for whom a high blood sugar feels like the ultimate failure. Things that knock directly at self-esteem and self-worth can cause anxiety. If those feelings of anxiety are caused every time you have a blood sugar out of range, it would be very possible to develop a “phobia” of high blood sugars. And any phobia can cause people to think and act irrationally – including putting themselves in danger.

I think more than anything, my friend needs some help digging out the reasons of why he runs so low. I don’t think anyone likes the way a low feels or the damage a bad one can cause to yourself or anyone around you. I also know it’s hard to ask for help sometimes, and diabetes can make you feel like you’re completely isolated and that no one will understand. It wasn’t that long ago that people didn’t really talk about the emotional side of this disease. There are more resources now – including mental health professionals that specialize in helping people with diabetes.

My hope is that my friend one day gets some help. As frustrating as it is for people around him to watch this self-destruction, nothing can be worse than what he’s putting himself through in his own head. That’s where the real work – and real healing – has to begin.

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Though I am certainly not to the level your friend is, in my head a high of 200 is way worse than a low of 50. And, yes, I am working on NOT worrying so much about a high of 200 and concentrating on not going lower than 60 (ideally 70 but I am trying to be realistic). This last three month period I only had ONE bad low and that was when I was changing my Dexcom sensor (so I almost don’t count that one:) ). I think it is the fear of amputations, blindness, kidney failure that drives this in people. When first diagnosed (I was diagnosed two years ago at 29 so a little different maybe than if I started as a child) and you google it, that is all you read. So, your first exposure is not really an accurate one but one that drives a deep fear.

Annie thanks for your comment. I think that’s a great observation you make about your first exposure – it’s all fear driven! How could think anything else but the worst. What are your strategies for coping with those feelings you get when your BG is high?

Wow, very interesting post. I hadn’t heard of someone having a fear of hyperglycemia. I’m really scared for your friend and hope everything works out for him.

I have a wonderful endo – and he asked the very simple question – what has a higher risk of injury and/or bodily harm: sitting at 180 for an hour every now and then? – or – hitting 30 while driving and getting in a car accident and injuring/killing yourself and/or someone else? Harsh question, but it really hit home!!! I still get those worries when I see BG going higher, but my last A1C was a 5.1 so in my head I know my anal/typa A personality actually has a good purpose:) and to work on not freaking out about a high.

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