Paige Rawl grew up enduring intense bullying due to her HIV status. Her new memoir recounts the journey.
Kurt Andersen is a novelist and host of public radio’s Studio 360. We spoke to him this summer about his new novel, “True Believers,” which tells the story of a high-achieving woman and how the 60s shaped her. Present throughout the story is the protagonist’s struggle with type 1 diabetes.
It’s a topic that Andersen knows all to well. He developed Type 1 diabetes when he was an adult and said he really couldn’t find diabetes described in a story. Here & Now’s Robin Young spoke with him about living with the disease, the conversation is excerpted below.
Let’s remind people — Type 1 diabetes is the disease in which the pancreas, which produces insulin, has been completely destroyed. Whereas with type 2, at least in the beginning, insulin is still being produced, but isn’t properly used in the body. Unless they choose an automatic pump, people who have type 1, like you, have to constantly monitor their blood and inject insulin.
We do, and I don’t know if I can speak for everyone with type 1, but it wasn’t our fault! It’s not a result of lifestyle choices or anything else. It’s simply some still-mysterious combination of genetics and environment that causes your pancreas to go kaflooey at some point.
And you can’t change it — The pancreas is shot.
It’s gone. Yeah. So as a result if you manage it well, you test your blood many many times a day and inject insulin accordingly to try to do what your pancreas isn’t.
We always hear from people when we use words like “fault,” to distinguish type 1 from type 2. There are people who have type 2 who say that it isn’t their fault because some have a complicated medical condition called insulin resistance.
I understand that and I was being somewhat tongue and cheek. And there are tens of millions of people with type 2 diabetes, which is the more familiar one that is skyrocketing in incidence, and there are only a million or 2 million people in the United States with type 1.
And sometimes the people with type 2 can reverse theirs, sometimes they do need to use insulin themselves. But let’s get back to your character. One of the things that jumped out at me and a friend with type 1 was this idea that people with diabetes might have mood swings because of the high and low blood sugar.
It’s mostly low blood sugar that causes significant and problematic moods, often when people are trying to control it too tightly, inevitably sometimes you overdo and you become hypoglycemic. It is biochemically the same thing that some [non-diabetic] people feel when they’ve missed a meal or two and get cranky.
A friend of mine the other day was talking to me about this, he was unaware of the nature of my constant blood checking, and he said ‘I’m kind of jealous. I would love to take a drop of my blood any time I’m feeling angry or upset or confused… and thereby have the objective answer of whether it’s actual emotion or just some fluke of my blood chemistry.’
But yeah, that is the issue. And of course people say, ‘Oh diabetes, it’s treatable.’ And that’s all true, but it is also… a thing that requires management and as I depict in this fiction, has these subjective effects that are invisible to the world.
It’s one thing to be aware yourself that you may be getting cranky because your blood sugar is low. But if people around you know you’re diabetic, they might try to rob you of real feelings. Has that happened to you, where someone says, “Oh come on, you’re just getting a little low,” when you really feel something?
Of course, and there’s nothing more annoying than that. Or than the well-intended people around you who say, ‘Oh, are you low?’… This sense of being infantilized and being treated as a kid who isn’t aware of his or her emotions or state of wellness.
Because of that fear that someone’s just going to assign my feelings to my diabetes, a lot of people don’t tell others they are diabetic. Your character does tell people, but do you? You are now.
I am now, but I never have. I’ve never been a big poster person for it. I’ve never denied it. And like my character, I’m pretty brazen about pulling out the works and shooting up [with insulin] in the middle of restaurants and so forth. And I didn’t do this in order to achieve sympathy, I just thought it was an interesting thing for a character in fiction, because only in fiction can you really get inside somebody’s head and suggest how this feels.
At one point the character does relay something very familiar to people with type 1 diabetes. She had to call 9-1-1?
Well in that case, her teenage daughter has to call 9-1-1 because [her mother] has gone into a coma. And if people are not well trained by their doctors when they’re diagnosed or if they’re a kid or for whatever reason they’re not managing it carefully, when blood sugars go too low it can be a really serious situation.