I saw diabetes from the other side today. On a trip to the vet with my wife (and our feline), I saw someone in the throes of severe hypoglycemia. Sitting in a waiting room, a man near us began moving and swaying, as if a little drunk. Nobody, including me, took any particular notice. And then he began moving more violently, clearly having some kind of medical issue. My wife immediately suspected he was suffering from low blood sugar, and informed the crowd that he needed sugar immediately. I had glucose tablets on me, and so we offered them to the family member of this man who was trying to get him to eat something. In his confused state, he was refusing to eat them initially but eventually swallowed enough of them to begin coming out of his severe hypoglycemia. My wife, the central hero of this story, was able to run down the street and buy a juice for the man, which we were able to get him to drink as soon as he had regained a little of his cognitive capacity. In the end, he was OK, but it was a close call.
When the crisis was over, the family member thanked my wife and me for our help. And then she said something that stuck with me — she said she didn’t understand why he was low since he “had breakfast this morning.” Assuming this man uses insulin (which he must if his hypoglycemia became this severe), it’s clear his family member didn’t have a real understanding of HOW diabetes works — after all, for someone who uses insulin, postmeal is a prime time for low blood sugars since a miscalculation of the meal’s carbohydrate might mean an excess of active insulin in the bloodstream. Now, I don’t say this to call out the family member or make an accusation, but to highlight a crucial point — we, as people with diabetes, need to make sure those closest to us understand how this disease really works so that they can provide assistance in situations like this.
What is type 1 diabetes?
Type 1 diabetes is an autoimmune disorder in which the immune system attacks and destroys the insulin-producing beta cells in the pancreas. As a result, the pancreas produces little or no insulin. Type 1 diabetes is also characterized by the presence of certain autoantibodies against insulin or other components of the insulin-producing system such as glutamic acid decarboxylase (GAD), tyrosine phosphatase, and/or islet cells.
When the body does not have enough insulin to use the glucose that is in the bloodstream for fuel, it begins breaking down fat reserves for energy. However, the breakdown of fat creates acidic by-products called ketones, which accumulate in the blood. If enough ketones accumulate in the blood, they can cause a potentially life-threatening chemical imbalance known as ketoacidosis.
Type 1 diabetes often develops in children, although it can occur at any age. Symptoms include unusual thirst, a need to urinate frequently, unexplained weight loss, blurry vision, and a feeling of being tired constantly. Such symptoms tend to be acute.
Diabetes is diagnosed in one of three ways – a fasting plasma glucose test, an oral glucose tolerance test, or a random plasma glucose test – all of which involve drawing blood to measure the amount of glucose in it.
WHO needs to know?
So the first question that comes up: WHO needs to know how our diabetes works? Obviously, we can’t completely educate every single person we come in contact with. But there is a core group of people that we really should educate. The people we share our lives with, the people most likely to be with us if something goes wrong, need to understand diabetes on a level beyond the general public. Our spouses need to understand the ins and outs. Our roommates or other family members we live with need to understand. I travel often with a band on the road, and I have gone through a fairly detailed explanation of how to respond if I’m low, how to tell if I AM low, and when I’m most likely to run the risk of hypoglycemia. They understand how insulin works on a basic level, and so they understand why postmeal might be a time when blood sugar can drop. I have given a bit of an explanation to coworkers (the music school where I work as a teacher), but I realize that this is a group that might benefit from a little more knowledge on the subject.
In any event, a good rule of thumb is that anyone you see on a regular basis should receive some basic information on how your condition really works, what signs they should look for, and what actions they should take if they notice those signs.
WHAT they need to know
After a number of years and plenty of conversations with friends, family, roommates, my wife and others, here is the vital information that I have decided needs to be understood by my circle:
1. They need to understand how insulin and food interact in a basic way. They don’t need to know my carb ratios or all of my blood sugars. They don’t need to count carbs WITH me every time we eat. But they do need to know this: Insulin is matched to food. Food is not always easy to calculate. Because of that, it is always possible for the insulin dose to be too high and push blood sugar too LOW. In other words, “he just ate” does NOT mean “he can’t be low.”
2. They need to understand the basic concept of how blood sugar works. They need to understand that blood sugar should be within a target range of around 80–140. They need to understand that high blood sugar is seldom an immediate danger — that blood sugar can climb over 300 without danger of passing out. Of course, ketones are a potential issue with high numbers, but there is just more room for “error” on the high end of things, where swings of 100 to 200 aren’t going to end in loss of consciousness. On the other hand, low blood sugar can pose a serious threat by a drop of just 40–50.
3. They need to know what the signs are of hypoglycemia. My wife can spot low blood sugar like a hawk! We can be in a conversation, and she’ll notice just a slight lag in my processing speed and ask if I’m low. Nine times out of ten, I am beginning to dip. Not everyone will have that sharp a sense of hypoglycemia, but they need to know the basic signs — lack of focus, sudden feelings of fatigue and disorientation, suddenly going quiet in the midst of an otherwise normal conversation, and other signs. The subtle, early warning signs are a little different for all of us, so it’s up to each individual to explain what a low blood sugar looks like for them. They of course need to know the major signs — heavy sweating, shaking, extreme disorientation, dizziness and so on.
4. Finally, they need to know WHAT TO DO if we’re low. The family member in the situation the other day didn’t know how many glucose tablets to give the man in the midst of extreme hypoglycemia. If I hadn’t counted out more, she might have only given him one or two. So we have to tell our circle of people something more detailed than, “give me sugar.” We have to tell them what specifically works. “Give me 10 glucose tablets,” “give me at least 10 ounces of juice or non-diet soda,” and so on. We need to give them a number of grams so that if our chosen items are NOT available, they can look on the nutrition labels and figure out how much of the emergency food is needed to reach our target number — for me that is at least 40 grams of sugar in the case of an extreme low. They need to know that as soon as we have consumed our sugar we should be asked to test, and that until our blood sugar climbs back into our target range, we need to continue consuming sugar and testing every 15 minutes until it does. Finally, they need to know where the glucagon pen is and how it works. If you do pass out, they have to be able to use it without your assistance!
How you share this information is up to you. After the other day, I have actually been thinking about writing up all of my critical information and printing out a one-page “handout” containing all of the vital information and offering it to my circle of people. It will feel very awkward, I’m sure, but that’s a small price to pay for the comfort of knowing my circle understands exactly what to do if things go south! However you choose to do it, just make sure your inner circle knows how to respond in serious situations like the one above, and make sure they have a deep enough knowledge of your condition that they aren’t trying to operate on a partial understanding of what diabetes is. You owe it yourself and to your family to give them the full story.