I Know Someone Who DIED From That

Many, many moons ago, I worked with a girl who had a tramp stamp in memory of her father who'd died. She also had a teeny, tiny stud in her nose, and her boyfriend had one undesended ball (I'm more mature now, and if you tell me these things about your boyfriend or husband I no longer want to giggle each time I see them, because I immediately try to forget I know the second after you give me this type of information). She also had diabetes. Once, the manager for our department went up to this girl and asked her, right in front of my desk, what she should if she "has a diabetes attack" and so the girl launched into a two minute explanation of some needle that she kept in a certain spot in her desk and where to jab it into her body and how to do it so the insulin would get in. I was on the phone at the time and didn't hear the details, but clearly remember the look of shock on the girl's face when the manager wrinkled her nose and said, "Oh, that's way too complicated, never mind," and walked off.

Recently someone on Twitter raged a few times about people being ignorant when it comes to diabetes. Which made me think, "Umm ... I'm pretty ignorant. Shit, have I said anything offensive about diabetes lately?"

I always sympathize with the ignorant asshole - probably because so often it's me - and this time came up with a way to do something about it. I asked said Twitter-er if she'd like to do a guest post (!) on my blog about her diabetes. And now you will know what not to say when someone tells you they have diabetes. (Thanks to my Twitter Friend for doing this, and apologies for font issues - there was a lot of cutting and pasting going on.)

1. What kind of diabetes do you have? The kind that's kept in check by diet, or do you need insulin shots?

I'm a type I diabetic. It's the kind that they used to call Juvenile diabetes, or insulin-dependent diabetes, but neither of those names are used too frequently anymore. I take insulin, but in my case, instead of taking shots, I have an insulin pump. That's a small computer, about the size of a cell phone, that's attached to me by a teensy little catheter. It holds a reservoir of insulin and the computer gives me a very low dose constantly. When I eat or if my blood glucose is high, I give myself extra insulin. It's a lot more convenient than having to give myself shots. I've also found it's a lot less conspicuous than having to pull out syringes and insulin if I want to have a snack. A syringe tends to draw a lot of attention and curiosity, and that curiosity is often negative.

2. If you have to walk around with needles, how do you get on airplanes with them? Do you carry a doctor's note?

That's exactly what I do, actually. Before I fly, I have my doctor write a letter stating that I am diabetic and must travel with syringes, insulin, my pump, and monitoring equipment on my person. When I go through security, I put everything but my pump and continuous glucose monitoring system in a clear plastic bag so that it's all visible, and I inform the security agent that I'm traveling with medical equipment. Then when I go through the metal detector, I turn my pump off, detach it (which is not at all a big deal), let them X-ray it, then turn it back on and re-attach it. Not a big deal, as it turns out--I thought it would be the first time I flew, but the screeners have seen it all a million times before. Yeah, yeah, lady. Just make sure your laptop is out. What's interesting to me is that I do have to turn off and disconnect my continuous glucose monitoring system, which is a little plastic radio transmitter, when I fly. You know how they tell you to turn off laptops, cell phones, and other devices before the plane takes off? It's just like that.

3. If we know someone with diabetes, should we not offer them sweets?

Oh, wow. That's really a great question. Diabetes treatment has changed so much over the last 20 years, even over the last 10, and most of us can (and do) occasionally indulge without it being a big deal. My first inclination is absolutely to say yes, I do think you should, especially if they're a part of a group and you're offering something sweet to everyone--dessert, for example. Offering doesn't quite have the impact of, say, offering a drink to someone who's in recovery for alcohol abuse or something like that, which is fraught with all kinds of...I don't know. Part of this disease is learning to make good choices for ourselves, and while you might feel a little awkward about offering, we're just fine with saying no thanks if we need to. What's so much worse for us is feeling singled out or excluded for being diabetic. I know a diabetic who was diagnosed at 8. The year after she was diagnosed, at her birthday party, her mother baked a birthday cake, served everyone else but her, and then handed her a bowl of apple slices.

4. What's a good thing to say (other than 'Oh....' or 'Hey, my dad's cousin died of that in the 80's') when someone tells you they have diabetes?

One of the things we struggle with is finding a way to tell people that isn't a total downer or conversation-ender. Most of the time, people notice my insulin pump and ask me about it. People love technology and are curious about things they've never seen before, and I would much rather answer questions about it than hear about how someone's grandmother went blind and had all her toes amputated. Although I'm sorry to hear about that grandmother and her toes, I already got the memo that diabetes is scary. You wouldn't believe some of the things I've heard people say. My all-time favorite is still, "But you're not that fat!" Oooh, thanks, but I've got the other kind. Anyway, I guess the best answer to your question is probably to ask a question. Ask them if they're type I or II. Ask them when they were diagnosed. Most diabetics would much rather answer a question or two--we're always impressed to hear that someone knows something--than hear about the multitude of awful ways we could die.

5. What should people avoid saying?

Ohhh, the internet. A little knowledge can be a dangerous thing, and I've been told that I can cure diabetes with cinnamon, cayenne pepper, a vegetarian diet, a vegan diet, the power of prayer, and roots from a certain tree that grows in the U.S. Southwest. Let me just say this: there is no cure for diabetes, and people who try to convince you otherwise are, without fail, pursuing an agenda that has nothing to do with you or your health. I would avoid any sentence that starts out "I've heard you can cure diabetes with..." The implication is that we're fools to still be suffering from the condition, because there's a cure. Believe me, there's not a cure. With nearly 25,000,000 Americans now suffering from diabetes, the word would be out by now.

6. What assumptions do people make about you when they find out you have diabetes?

The usual: I must not be very active or energetic. My health must be very fragile. I'm not crazy about the assumption that someone knows all about me just based on the fact that they have a cursory knowledge of the facts of diabetes. Probably the assumption that I like the least is one that, surprisingly, often comes from medical professionals, and that's that I don't know anything about diabetes. My experience is that many doctors who aren't specifically diabetes experts don't know as much as I do. I had a baby last summer, and when I was pregnant, I had an excellent obstetrician who freely admitted he didn't know a great deal about diabetes. He was terrific about asking questions about things like my insulin pump, how often I checked my blood glucose and what range I tried to keep it in, some of the little foibles of the disease. He was eager to work with me, he said, because my health was very good and pregnant diabetics who are in good shape tend to have fewer complications than those who aren't, and even fewer than some non-diabetics, because we are so knowledgeable about how our body works.

7. How old were you when you got it? Do your kids have it? Are your kids more likely to get diabetes because you have it?

I was diagnosed at 25, in the summer of 2001. I got the flu the winter before, and my doctors think that the virus caused my immune system to mistake the cells that produce insulin for invaders, attack, and kill them. I have no family history of diabetes--nobody in my family has it. Neither of my children have it, and they're not any more likely to get it than any other kid with non-diabetic parents. I'm not genetically predisposed to diabetes--it's just one of those crazy fluke things that happen sometimes. My kids are actually at higher risk for type II diabetes--my mother-in-law has it--than type I. Of course, I'm a mom, which makes me crazy and paranoid, so I went through a terrifying couple of days when my son was 2 1/2, when he began demanding a bottle of water to take to bed with him at night, resulting in a sopping wet bed every morning. I had him tested for diabetes, and he tested negative, but still. Scary stuff.

8. Does diabetes get research funding like cancer? Is somebody working on a cure? Is there such a thing as a cure?

Diabetes does get research funding similar to cancer. The American Diabetes Association, the Juvenile Diabetes Research Foundation, and the Federal government are among those who are working like mad for a cure. Like with all autoimmune diseases, it's tough to find a strategy to selectively turn off the immune system--to tell it to stop attacking one specific cell. There's a really exciting development in Australia: a nanovaccine that does exactly that in mice. It could potentially lead to a human vaccine against type I diabetes. There's also been some promising research into islet cell transplant, or taking insulin-producing cells from a donor and transplanting them--but in the long term, that hasn't worked very well. Transplant patients have to take huge doses of steroids in order to suppress the immune system, and one of the effects of steroids is that they raise blood glucose levels. So basically, in order to make insulin, they transplant these cells, which ultimately raise the demand for insulin so much that they basically end up exhausting the cells that they've transplanted. But 100 years ago, diabetes was basically a fatal, acute illness--there was no real effective treatment at all. So the bell curve that research is on says that we're close to a cure. That'll be a good day.

9. What do you wish people knew/understood about you and/or diabetes that they (we?) don't?

We don't all look like Wilford Brimley. Diabetics are an exceptionally diverse group of people, many of whom take great care of themselves and are proactive about their health. Despite that diversity, we almost universally hate being told what diabetics are "like." It's like trying to describe what people with curly hair are like--just way too broad a category to accurately form a generalization. Diabetes is serious, but it doesn't have to occupy every corner of your life. I give it the same effort as I do raising my kids or maintaining my relationship with my husband, and I do it as much for them as I do for myself. As much as I'd like to see a cure in my lifetime, my assumption is that there won't be one, and so I try to take as good care of myself today as I did the day I was diagnosed.

10. Since you have a catheter in you all the time, do you worry about people bumping into you? Can you not play contact sports because of it? (Do you have to be careful when you're having sex because of it?)

I don't worry too much about people bumping into me. The catheter, which is the part that's actually under my skin, is a little tiny flexible plastic tube that's about the diameter of a thread and less than half an inch long. It's taped in place right near my hip and most of the time I can't feel it, The bigger problem is the tubing--if I don't have it all tucked under my clothes, I've done things like catch it on door knobs and that kind of thing. I've never accidentally pulled it out that way, but it hurts, mostly because of the tape. I have yanked out the catheter pulling my pants on or off a couple of times, which is also not that much fun. I usually forget to carry an extra infusion set and inserter with me if we're just out for the day, so if I do that, it means we have to turn around and go home.

As far as sports, it tends to be a personal preference, but in general it's fine to wear the pump during. They make holsters and that kind of thing, similar to those armbands people use for their iPods, that go around the arm or the leg, which keep it pretty close. Some people will reduce the amount of insulin they get while they're playing sports or exercising, because the activity can cause blood glucose to drop. On the other hand, you don't want to be off the pump for more than an hour or so, because you'll start to become hyperglycemic unless you're really exercising hard. The pump is water-resistant (one of the very first things I ever did with mine was to accidentally drop it in the toilet) but not waterproof, so I take it off when I swim or shower--it's got a little detach mechanism right at the skin, which leaves this little grommet stuck in my side. And as far as sex goes, usually I take it off. It's not that it freaks my husband out, he's adorable and surprisingly non-squeamish about it. It's just that we tend to get tangled up in the tubing or roll over on the pump. It doesn't hurt the pump, but I've ended up with a pump-shaped bruise on my butt before.